I have been suffering with similar symptoms for over a year. I received the same to diagnoses (vestibular migraine and PPPD). I was also prescribed blood pressure medication and an anti-depressant. Recently, my neurologist sent me to a neurologic optometrist since I had found that my symptoms were consistently triggered by using the computer or my phone. She thought the optometrist might give me some exercises that would help. He did a test that showed a vertical misalignment between the line of sight of one eye with the other eye. He diagnosed me with vertical heterophoria and prescribed prism eyeglasses to wear when I am using my devices. I immediately felt less dizzy and after about three weeks, I am feeling normal. Anyone whose symptoms are similarly triggered, should have their eyes examined by a neurologic optometrist.
I have found that in many, though not all, cases my patients with dizziness have a problem with their neck. Often it's a fairly simple matter to resolve the dizziness by loosening neck muscles and gently freeing up rotated or laterally displaced vertebrae. It doesn't always work but it certainly needs to be tried.
Although the author has had all manner of evaluations and treatments, it's possible that no one has looked at his neck or the bones of his skull.
My heart goes out to the author and everyone who is dealing with chronic dizziness or vertigo. Be assured that I do not dismiss this life-altering symptom!
5
I suffered from an occasional spinning sensation, such as when turning over in bed or looking up at my much taller husband, for more than a decade. Since it was mild, I had no other symptoms, and assumed it was BPPV (benign paroxysmal positional vertigo), I put off seeking help. I finally went to an ENT specialist, who agreed BPPV was the likely cause and suggested I get an MRI. I countered that I would like to try physical therapy first, but would get the MRI if my symptoms didn't resolve. Sure enough, one session to get the Epley maneuver was all it took to make the vertigo go away. Takeways: 1) Don't ignore vertigo, even if it's mild. I suffered needlessly when there was a readily available, simple solution. 2) Don't go straight for an MRI if vertigo is your only symptom and you suspect BPPV. Physical therapy could be a simpler and much less costly route to relief.
2
@Cheryl The Epley maneuver is definitely one of the first things that should be tried. And as I wrote above, structural issues in the neck and head need to be evaluated. A physical therapist is a good person to see for all that.
1
Kudos to Mr. Platzer for sharing his experience. It is vital that we all help guide and support others and be sure no one feels invisible. You are not alone! After 17 years and close to 20 MDs, I have reached a point where I am fairly stable knowing and trying to manage my "triggers". I have seen some of the most prominent doctors at leading hospitals in MA and NYU resulting in many different diagnoses and opinions. I have the best medical coverage and can research and advocate for myself which many cannot do. Just imagine hearing words like vestibular, Meniere's, migraineur, neurotologist, Benign Paroxysmal Positional Vertigo!!!!
I am fortunate to be under the care of an incredible doctor in NYC and one of the best vestibular therapists in MA. They are open to new ideas including Virtual reality treatment (goggles)as suggested in a clinical trial and reports from Walter Reed Hospital treating returning veterans who have these disorders.
I highly recommend everyone to become engaged with the Vestibular Disorders Association https://vestibular.org/ for the most comprehensive medically validated information. It also offers many links to finding the right professionals and support groups.
4
This author is merely using NYT as a platform for chronic non-specific lightheadedness caused by anxiety which he refuses to acknowledge. He prefers the diagnosis of PPPD which is the same thing. He and the NYT are causing public health harm. Xanax is addictive and will cause falls and injuries when he becomes old.
1
I can assure you that violent vertigo causes anxiety and not the other way around.
@Margaret Brown agreed.
Sad that you publicize your private medical information in order to promote a fancy diagnosis to denigrate physicians. Your diagnosis of persistent postural perceptive dizziness is just a medicalized term for chronic dizziness and wooziness, and is treated the same way with a drug such as Zoloft and CBT. Xanax is a dangerous addicting drug that should only be used short term. Physicians should tell their patients the truth, especially in this age of anti-truth.
@dnm95 I was treated by internationally acclaimed Bernard Cohen, MD at Mt Sinai from 2007 until his retirement. https://loop.frontiersin.org/people/19442/bio
He was a strong advocate of valium as a muscle relaxant to suppress the activity in the inner ear. These are in pediatric doses so that they can be used long-term, or as needed. Valium was originally developed as a muscle relaxant. It is unfortunate that you demean all of our experiences.
4
@dnm95 And Zoloft is a drug that caused me severe side effects and was totally intolerable. (It was prescribed for insomnia.)
CBT isn't going to fix symptoms that have a physical basis.
Physicians should have some empathy and not ride around on a high horse.
3
@janit Indeed it's unfortunate that a physician demeans a whole class of patients, people he's never even met.
I hope you aren't suffering from this problem anymore.
1
Great article about your experience with vertigo. Thank you for sharing your experience. I have been dealing with vertigo since I was dx with MS in '94. I found that I can control my vertigo with sea bands / anti vertigo bands that I wear on my wrists. Keeps the world more steady and my walking straighter.
There's a link to the main manufacturer's website for sea bands below. Please note, you can find generic versions much cheaper on Amazon / eBay / online, etc under anti vertigo bands, morning sickness bands, sea sickness bands and such.
https://www.sea-band.com/
Good luck in your journey.
2
@Ben That's wonderful that you found something to help! Folks, please note that the Sea Bands press on the acupuncture point Pericardium 6 on the wrist. You can also just press it, or of course have acupuncture on it, but the advantage of the bands is that they keep applying pressure for hours at a time.
I am a former neurofeedback practitioner. I encourage you all to listen to a TED talk called "Ringing in the Brain" at YouTube.
https://video.search.yahoo.com/search/video?fr=mcafee&ei=UTF-8&p=ted+talk+ringing+in+the+brain+youtube&type=E211US752G0#id=1&vid=8b438288928864accd42a755eab0ae1e&action=click
Neurofeedback should be added to your list of interventions to consider. It helps some people enormously who describe a sense of being disoriented, floaty, spacey, foggy, nauseous, and dizzy. It isn't a cure-all. People's situations are usually multi-faceted. However, when it helps at all, it often helps dramatically.
4
So, in essence, you are benefitting from and being treated with anxiolytic and anti-depressant medications.
1
It's especially hilarious when you are actually staggering around in a doctor's office, nearly passing out, and they tell you nothing is wrong and you are fine. I had extremely adverse reactions to a neurological test and to the treadmill, but I guess this is normal, and so is feeling fatigued and out of breath 24/7 for 6 years. I was silly enough to think maybe heart disease or cancer - silly me!
6
Have you had a concussion? Fatigue is a symptom of a concussion. Common issues after a brain injury need to be diagnosed by specialists. Try COVD.org and vestibular.org.
I appreciate all the info in this article. But seriously NYT, the graphic accompanying this piece can’t be helpful to readers who experience dizziness!
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@Blueoctgal True-- I don't have dizziness but it was really irritating me too!
@Blueoctgal I can't agree strongly enough! I have dizziness issues and when I clicked on this link, I had to speed scroll down because the graphic really set my symptoms off.
Whose brilliant idea was it to post this article with a graphic that is bound to make so many people dizzy?
4
I plan on reading all the comments re this article.
I was diagnosed with Afib 18 months ago and was started on a regimen of meds.
At least one of them has dizziness/vertigo as a side effect. It has been hellish but I just thought I had to suck it up and deal with it.
I now plan (after reading just a few of these comments), to see my ENT and pursue a course that will alleviate this curse.
1
@Mary M. One of my patients developed headaches and dizziness from the metropolol that was prescribed for her A-fib. Lowering the dose helped. Best wishes!
@Mary M. hypothyroidism. if you tell me your thyroid tests were low I say, "Bully,". look up a satisitc 60% of thyroid disorders are undiagnosed. lab TSH test is ridiculous. rather look up thyroid cardiovascular Harvard, they will tell you a thing or two. 3 articles for the public. then to get any where you will need a functional medicine doctor good at thyroid treatment good luck.
@Mary M. hypothyroidism. if you tell me your thyroid tests were low I say, "Bully,". look up a satisitc 60% of thyroid disorders are undiagnosed. lab TSH test is ridiculous. rather look up thyroid cardiovascular Harvard, they will tell you a thing or two. 3 articles for the public. then to get any where you will need a functional medicine doctor good at thyroid treatment good luck. I forgot to mention hypothyroidism is major cuase fo vertigo in all its forms but do not think it will even get mentioned on this thread or was not mentioned in the article.
Doctors don’t dismiss symptoms. We work the patient up following the “standard of care” guidelines. And that has nothing to do with insurance companies. The misperception is astounding.
Why do people take so much pleasure in accusing physicians- like we are Gods that should know and must have answers to every symptom a patient experiences. Ultimately this patient was treated with anxiolytics and anti depressants. He was given a diagnosis “PPPD” that meant and changed nothing, but clearly appeased him, because now he has a diagnosis that wasn’t “anxiety” even though the treatment given was for it.
Bravo!!
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@Sandra Campbell
Thank you for your negative wishes- I will never wish anyone the same. Some will never stop with the blaming or shaming.
And just an FYI- I have and didn’t blame my doctors or victimize myself for it. Ultimately it’s your attitude that counts. Cross reference it.
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@Roji Menon Doctors absolutely do dismiss symptoms in many cases, and not simply because you’re following “standard of care” guidelines. (Indeed, literature shows very few physicians actually follow published standards on a regular basis and don’t use them consistently to guide diagnostic or treatment decision.) There’s also voluminous peer-reviewed literature regarding physician misdiagnosis/dismissal well as innumerable patient accounts of misdiagnosis, poor bedside manner, medical trauma and even abuse. I don’t know anything about you or your practice, but I’d urge you to familiarize yourself with this literature and listen earnestly to patient advocacy communities. Medical professionals have extensive substantive duties to patients, not the other way around. For reference, I am a health systems and public health researcher, legal/policy analyst, and rare disease patient who spent decades (literally) being misdiagnosed and mistreated by physicians. I also have great relationships with my current treatment team.
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@Roji Menon
My experience is some doctors will use "standard of care" to avoid actually caring and/or to avoid any liability. I had a wonderful oncologist when I was diagnosed and treated for cancer. This doctor dealt with me the person, not just following a "SoC" protocol, to help alleviate some of the side effects of treatment. He left and I got a new oncologist who was very nice, but couldn't see beyond the "SoC." As a result, I found another doctor to provide the same treatments my new oncologist won't provide. I won't go to this other doctor for all my care because the extra doctor is an "anti-vaxxer" quack, but they give me the prescriptions my original oncologist did and that my new one won't.
2
I was very pleased to see this article, as I have been dealing with both light headedness and Vertigo for about a year, even having to be hospitalized for several days. I have had several Vertigo attacks (not nearly severe as the first one), which have been resolved by using the Epley Maneuver. However, several of my family members and friends have also had recurring Vertigo issues, and I have seen some articles suggesting that this may be related to Covid19. I have never tested positive for the virus and am fully vaccinated, but still wonder as to its casual relationship to these issues.
3
@Robert Semenza - I had a severe vertigo, causing a fall, 1 week following the first Pfizer vaccine. 2 weeks after the second vaccine, I had continuous dizziness and disequilibrium. I have been to an ENT who did all the tests and found nothing abnormal and was referred to a vestibular rehab facility. I was treated twice weekly for 2 months and nothing got better. In fact, it got much worse and continues to this day. I am going to try the suggestions in this article and hope for the bestou.. Good luck to you.
A few years ago I started to get lightheaded often. It was so bad that I couldn’t walk a moderate distance or stand in place for any length of time, without feeling like I would pass out.
The doctors took it very seriously and I went through the mri, Mra, tilt table device, heart monitor and neuropathy tests.
I was ultimately diagnosed with idiopathic orthostatic hypotension. Aka unexplained low blood pressure at times. The only real danger is banging your head if you pass out while standing. Thankfully, I’ve never passed out and once the anxiety of not knowing what it was dissipated, I have it under control. Water, regular exercise, sleep…..
It’s worth asking your doctor about the blood pressure if all else fails.
3
I get vertigo when I have back pain. I can literally put my finger on the pain in my back, do stretches and make the vertigo go away. When it hits my vision is blurred, my brain literally feels like it's pulsing and sometimes I fall over. They have tested my ears, blood pressure and done full body scans and brain scans. They identified tarlov cists in my back but brush it off as having nothing to do with it. Now I just live with it because two years, too many doctors, too many tests and not one of them will take the back pain seriously or even consider that it's somehow connected.
1
@Teresa Covert Have you seen a chiropractor, physical therapist, osteopath or acupuncturist to evaluate the back pain? MDs often don't know what to do with structural problems because they just haven't been trained that way. I hope you can see a professional who knows their way around the back.
1
@Elene if MDs are not trained, they should suggest to patients to see someone who is trained instead of brushing symptoms off as "can't be related" as they won't know. I mean who are they to comment? That's the problem with a lot of MDs. Too complacent in their own knowledge and too quick to be dismissive.
1
Drink water.
I suffered for years from intermittent dizziness which sometimes led to vomiting and often restricted my normal daily activities. An apparent un-related issue for me was severe muscle cramping.
Water.
Water fixed it. (And some magnesium for the muscle cramps.) I learned to keep a water/tea bottle next to me throughout the day and evening. I drink two full glasses of water when I get up in the morning. If I feel any dizziness or cramping coming on, I drink, and it abates.
Water. Inexpensive. Non-toxic. Accessible. Try it.
6
I had an outer ear infection and took some antibiotic ear drops. Then I developed vertigo now and then and also have tinnitis. I saw an ENT Dr. who said to stay away from sugar, caffeine and salt. I was having decaf for days and had a regular coffee and got dizzy in the shower....
3
It's funny how you just instinctively know what NOT to discuss with your doctor. These include symptoms of asthma (dismissed as anxiety if you are a woman); and dizziness symptoms dismissed as well, "you're a woman and dizziness will go away." It wasn't until I saw an audiologist for hearing loss who referred me to an ENT that dizziness symptoms were even discussed. let alone payed attention to. I had a hard time describing my bouts of dizziness to both these specialists because they had been dismissed for so long by my primary care doctors over the years. I was shocked that this symptom is now being investigated further by these two specialist fields! It only took 70 years for this old woman's symptoms to be taken seriously by someone in the health care profession!
6
I had extreme vertigo and dizziness for about 6 months. It may or may not have been triggered by a fall on a sailing cruise; it was initially diagnosed as "Mal de Mer". I had an ear infection, and had had many before. The insertion of an ear tube solved the vertigo about 90%.( It stayed in for about a year). I have since been diagnosed with Meniere's disease, and Semi-circular Canal Dehiscence (a little piece of bone is missing). My vertigo has not returned, but I have been put on a diuretic to limit fluid in the ear.
4
To the author’s list of places to go for help I’d add the vestibular clinic at New York - Presbyterian. They were great.
4
Several years ago, severe vertigo struck. I was unable to work, drive or do any of the activities that contribute to a normal, healthy life. Tests proved I did not have ear or brain issues. After seeing several doctors and neurologists, one suggested a course of physical therapy focused on balance and brain-training. For six months I did physical exercises that forced my brain to recognize true imbalance from the vertigo my mind created. Thankfully, I no longer suffer from vertigo although I occasionally feel the symptoms. In those instances, I force myself to remember the skills learned during PT. I would urge anyone with vertigo or uncontrollable dizziness to find a physical therapy practice that treats the condition. It saved my life.
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After medical tests show up negative, indicating that the problem is not anything physical it is best to see a chiropractor who specializes in kinetics. The problem is often due to a blockage of energy resulting in a problem of oxygen getting to the brain. No medication is required and one or two treatments in alignment to free the trapped energy can fix the problem by adjusting the misalignment that is caused it due a fall or a concussion. This is not a problem that a medical doctor can help with as it involves energy.
2
I hope everyone with dizziness and vertigo reads this valuable column. It took me multiple doctors, including an utterly clueless ENT, to be diagnosed with simple benign positional vertigo. After years of spending days at a time unable to leave home, I now know to get to a vestibular therapist and have the a simple Epley manipulation to my head. Like magic, the vertigo is gone. Why can't American doctors figure out such a simple thing? Is it just too cheap for them to bother with?
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@John
Thanks for posting this. I went through the same thing as you until someone suggested the Epley maneuver to me, and it changed everything for me. At first I went to a physical therapist to do the Epley maneuver, but after a while I learned I could do it on my own. I agree, it's like magic, the vertigo just went away. My PCP prescribed sea-sickness pills, which was ridiculous.
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@Rob I'm so glad the Epley maneuver worked for you. Respectfully, sea-sickness pills (Dramamine) for dizziness are not ridiculous, though. They are pretty standard for Meniere's disease, and they can help a lot in the short term while a person is looking for the cause of the dizziness and trying to get a definitive treatment.
1
My ex suffered from several episodes of dizziness, starting while we were still married. The first was so severe, I remember coming home one night and seeing him through our front dining room window stumbling against a window and knocking a screen out of it as he fell. He also walked a block to a meeting he had and, on his way home, vomited in the gutter. Someone seeing him would have thought he was dead drunk - as opposed to having just come out of a Bible study group where coffee was served. It was awful. The doctor he went to, who wasn't a native English speaker, told him, "You have dizziness" - but gave him a medication which cleared it up almost immediately. I think he had one or two more episodes, also of a week or so in duration, before he passed away many years later of unrelated causes. I can't imagine if he had stayed indefinitely in the state he was in - it was utterly debilitating.
3
Let me give a doctors perspective. The author is writing about vertigo, which is certainly a type of dizziness, but has been evaluated and diagnosed. Working backward from a diagnosis is a much different thing than working forward from a complaint. But the word “dizzy” has no real medical definition; when asked to explain their symptoms without using the word “dizzy”, many patients cannot. Often it is vertigo, but often it is not, often it is transitory, and unfortunately, often a definitive diagnosis is not established.
8
I urge anyone suffering with chronic dizziness to test your B12 and iron levels. I was low on both, I learned after 10 months of chronic dizziness (and many other deficiency symptoms, as it turns out). Though I live in the U.S., I followed the NHS protocol of injecting with B12 every other day until neurological symptoms of B12 deficiency improve. After 13 shots over about a month and a half, I’m close to a full recovery. P.S. Few American doctors will approve this regimen despite the fact that B12 is harmless in large doses. And many won’t inject if your levels are “in range” though chronically low. I sourced the B12 (I chose the hydroxocabalmin variety popular in Europe) through a German pharmacy and enlisted a nurse pal to administer the shots.
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@Happy It's best to consider nutritional deficiencies with any chronic health conditions that aren't improving. Glad you found a solution.
My dizziness ended up being Addison's disease. Three trips to the hospital and multiple tests. Don't underestimate the possible seriousness.
4
As an urgent care nurse practitioner I see complaints of dizziness often. Sometimes it’s hard for the patient to define what they’re actually experiencing. I’ve heard people describe it as brain fog, imbalance, sensation of movement, lightheadedness, and many other qualifiers. Typically there’s no obvious abnormal findings on exam and apparently same goes for my specialist colleagues. It can be a mystifying complaint because the causes are myriad and diverse.
Often when I have dizzy patients after my exam is complete all I can offer is to make sure I’m not looking at an emergency, ENT or vestibular PT referral, and then recommend ways to stay safe. We’re definitely failing our patients, but this article has made me think of the merits of recommending more immediate referral to one of the specialty centers mentioned if improvements aren’t seen in a certain timeframe after certain interventions.
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It appears from this article that there is no known suspect for this type of dizziness yet he wants to blame doctors for not knowing how to correct it. Doctors are not magicians they can’t just magically fix things. One can only study and diagnose known things. Unknown things may take years to stumble upon an answer. Doctors are human they can only do so much. The problem here is people thinking that they are gods who know everything about the human body. They don’t so don’t expect miraculous answers to unanswerable questions. It is always best to seek more than one opinion as well as do your own research.
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@David Gifford I experienced care for an ENT disorder in Japan that was far superior to what I have experienced in the US. Perhaps the profit focus in the US is what causes the unwillingness to “stumble” upon as answer. No matter, many of our experiences show that the best care is not found in the US, regardless of our American excuses.
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Here here!
If you are chronically suffering from dizziness, blurry vision, hearing loss, inability to concentration, forgetfullness, or any condition associated with brain function, a very good first step is to check your blood pressure. It is best to check your blood pressure when standing, but after sitting quietly for 10 minutes or so is usually adequate. If your diastolic pressure (the lower number in a blood pressure recording) is below 80 mmHg, you very likely do not have sufficient blood flow to the brain for it to function normally. The solution is to get your blood pressure back up inot the normal range (above 120/80 mmHg. In my experience, chronically low blood pressure, in the absence of dehydration, is due to solues muscle (second heart) insufficiency, so get those soleus muscles trained back up.
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Kind of funny that the dizziness misdiagnosed by many doctors as anxiety and depression is cured with an anxiolytic (Xanax) and an antidepressant (Zoloft)
3
@Morgan Yes and no. The article indicates it’s still not cured, and those drugs do have separate physiological effects that can help. Also, what may be happening that is helpful is that you worry less about falling down or vomiting in public.
4
That’s certainly true, but I found ambiguous and somewhat naive the description given in the article about these two drugs, kind of hiding their primary indication. Since the theme of being misdiagnosed by doctors is present throughout the article, I found humorous what the current therapy is. Maybe that was the author intention, by the way (humor). And I agree with the main point, dizziness is overlooked by doctors all the time.
1
@Rose Anne Yes-- those drugs are used for a range of conditions beyond anxiety and depression.
And anybody with a health problem that is destroying their quality of life and seems to have no solution available is likely to develop some emotional issues.
1
Meniere's disease, which I've had for almost 20 years, is another cause of vertigo. The symptoms are hearing loss (typically in one ear), a feeling of fullness in the ear, and vertigo attacks. Since I started out with hearing loss and the feeling that there was something in my ear, I went to an ENT right off the bat, which was fortunate because it landed me in the right place. The vertigo came later (as he predicted) and was debilitating, as the author described. Fortunately I was able to get relief by taking a diuretic (Dyazide). It helps many with Meniere's, apparently the condition involves swelling in the vestibular system and the diuretic can help. Anyway I've been symptom-free for years. I hope my experience can help someone else who may have it
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@Catherine My story is very similar, although the diagnosis of Meniere's came after a long period of seeing a regular ENT, not someone who really knows Meniere's. I also take a diuretic, Spironolactone.
1
In early 2014 I began to experience severe attacks of vertigo. Prior to that I'd had no experiences of chronic dizziness. The attacks would hit randomly, with no warning. My surroundings would spin around me like a circus carousel; if I didn't sit or lie down immediately I would collapse. My wife and I had a frightening experience while we were holidaying in southern France; I was hit with a vertigo attack while we were driving along the Autoroute near Nimes at 80 MPH. I managed to retain control of the car and fortunately there was an exit near at hand. The attacks would subside after a few minutes, but would leave me dazed and nauseous for some time thereafter.
I was examined by an ENT specialist who subjected me to various tests, culminating in an MRI, which revealed the culprit: an acoustic neuroma on the vestibular nerve behind my right ear. There are a number of treatment options for acoustic neuromas, chiefly radiation or surgery. As it happened, my attacks suddenly ceased and treatment was unnecessary. I am now under the care of a neurosurgeon who monitors my neuroma with an MRI every two years. As long as it remains dormant, I'm OK; but neuromas can remain dormant for years and then suddenly grow rapidly in size. 18 months ago I began getting attacks of conventional dizziness, which caused me a good deal of stress; but apparently the neuroma was not involved. Those attacks seem to also have ceased (knock wood), but tests have yet to reveal a cause... sigh.
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I suffer occasionally from bouts of dizziness and vertigo. On the recommendation of my doctor the Cawthorne Exercises work wonderfully to bring my balance back. Worth a try.
4
It is important to distinguish light-headed dizziness (everything about to go black - the sensation one gets when rising from sitting to standing quickly, especially if dehydrated) from vertigo dizziness (everything moving around) that the author seems to be mainly focused on. Light-headed dizziness is more common than vertigo dizziness and the causes mentioned in this article do not usually apply to light-headed dizziness.
8
So many good comments below.
Just 2 more:
—yes, “specialists” tend to have tunnel vision. In disorders such as chronic dizziness, the wholistic (in the whole body sense) perspective of a good primary care physician (a family physician or an internist) might yield a diagnosis and treatment, whereas a visit to a neurologist, ENT or other specialist might not.
—a CT AND an MRI? No wonder American medicine is broken. Two somewhat redundant expensive tests ordered by a doctor too overwhelmed to devote thought and clinical judgment to a patient!
2
Do you even know the differences the MRI and CT can yield for neuro imaging? And I have NEVER had a family physician ever figure vertigo out let alone the difference between central vs peripheral vertigo.
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@Resident Yes I had one figure it out in Japan, without imaging.
1
@Resident after 30 years in practice, it took your comment to make me realize how utterly incompetent I am and how I have wasted my life and career.
My father, Erwin Rock, was an otologist who had as a substantial part of his practice in the later years of his career treating patients in his"dizzy clinic" who suffered from chronic positional paroxysmal vertigo with the Epley procedure. Patients came from far and wide. He would recount stories of their years of being unable to sleep lying down or in various other positions and how they would be cured after a 10 or 15 minute manipulation that he likened to the little game children play rolling a small metal ball in a maze to get it from one end to the other. He described the procedure as putting back the grains of sand like material that circulate in the semicircular canals to where they belong, how those grains got out of place in simply needed to be put back. By the time he retired it seems his dizzy patients were among some of his most grateful patients. From his stories I have no doubt that the frustration those who suffer from this form of vertigo must feel when they find that there condition is not recognized or treated seriously.
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Great article Ben! if you live in the NYC area, NYU concussion center has a number of doctors who understand dizziness. One saved my life. Cornell is not equipped nor is Columbia. While I'm medication dependent daily, the dedication of my doctor at NYU Concussion center along with the wonderful therapists at their vestibular rehab facility has equipped me with the ability to deal with my vestibular migraines without fear and anxiety.
6
I have had about 7 bouts with what I thought was vertigo in my life, where I was not able to get out of bed for days because of severe dizziness when I went from horizontal to vertical. Medication sorted me after a few days. After the last bout, I went to a new doctor. He took my blood pressure lying down and standing..no change. Told me I didn’t have vertigo, I was dehydrated. Have been drinking more water..especially after flights. No more vertigo ever! Dizzy? HYDRATE! It’s the answer (in most cases)
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I was also experiencing frequent attacks of benign paroxysmal positional vertigo when I got up from the driver’s seat after trips of more than 20 minutes. I now always travel with a liter bottle of water and make sure to drink at least third - half before I get up and out of the car. No more attacks. This didn’t help me with vertigo, but the Epley exercises did. For vertigo, my primary care doc referred me to a website, not a PT. I really wanted to visit the PT I’ve seen in the past because they often add their own more effective twists to standardized exercises. If you can afford it, self paying for PT is well worth it. Where I live, 40 minutes of PT costs less than a massage or hair coloring! I also see an acupuncturist monthly to try to control neurological stuff like minor migraines. Seems to be helping. Good luck all.
2
Watch out for orthostatic hypotension caused by prostate meds especially flomax. Keeping hydrated can alleviate symptoms.
Lots of other meds can cause dizziness including ssris
1
Don’t you think people tried that? If it was just so easy.
I’m surprised that there’s no mention of the Epley manoeuver .. please do try that before all the doctor visits, tests, scans, medications etc. it sorted my friends dizziness in 5 minutes. There are YouTube videos about it
4
@Vismaya that's only for Benign position proximital Vertigo. When the ear crystals move.. that's the LUCKIEST kind of dizziness. A quick maneuver done by an ENT or a Neuro-Otologist (doctors who specialize in the inner ear and dizziness) that cures you in 5 min.
6
@deb Huberman But it should still be tried early on. If it doesn't do the trick, it does no harm and rules out one possible cause.
I endured 2-3 years of sometimes crippling vertigo after successful brain surgery for an arachnoid and Chiari malformation cyst. My surgeon didn't want to hear about my problem when I landed in his ER following a drop attack four weeks later. A succession of Harvard teaching hospital specialists could not determine the cause, offering only highly sedating antihistamines for symptoms.
Trying to walk in the dark on icy Boston sidewalks was hard. Turning over in bed would make the world spin for hours. I couldn't even read at times. Ceiling fans set off the terrible sense that I was tumbling, falling through space.
Gradually the symptoms declined. No one has ever given me a definitive explanation, but I also experienced loud tinnitus post surgery, and my neck muscles and fascia were cut, leading me to believe that a combination of inner ear nerve inflammation and adhesions altering proprioception in my neck muscles may have damaged two of the three inputs your brain uses for balance (the third being vision).
In hindsight I wish there had been better post-op physical therapy for me. I got some, but only after pushing hard. Surgeons and insurers need to recognize that healing after complex surgery involves more than just a nice incision scar and no bacterial infection. Maybe there's a short term vertigo inducing drug med students should be made to take so they can understand how hard it is to function or to enjoy life in any way when this invisible disability strikes.
13
As a child I was dizzy at times, and my mom would say "you've been burning the candle at both ends....." The doctor told her to have me sleep with two pillows under my head instead of just one. I felt better. My mother had bouts of vertigo (hers got worse when she closed her eyes!) My sister had "sinus headaches" which were debilitating for her (later diagnosed as migraines). As an adult I suffered from recurrent bouts of vertigo; after a few years of being told that there was nothing wrong with me I ended up sitting across from a professor emeritus at UCLA who told me I probably had vestibular migraines and included my family history in his diagnosis. Only three things made any difference: ATIVAN in small doses over one or two days, some small hits of marijuana (I get the strangest feeling that my internal gyroscope is being reset) and laying down, closing my eyes, and only opening them to get out of bed to go the bathroom (unlike my mother's vertigo, mine is better with my eyes closed). Put all those treatments together and I'm good to go after awhile (the episodes have become shorter and shorter). Just one more reason to legalize marijuana! Free the dizzy people!
12
I have positional vertigo. It was aggravated by a medical condition that was painful and I would toss and turn all night. Then wake up violently dizzy. We all talk about holistic medicine but god help you if you have two medical problems at the same time. Each specialist sends you away. It’s very hard to manage.
5
I think that people tend to think that a disorder is either physical or psychological but not both. But my sense is that there's always some combination of the two at work. For example, I have BPPV. When I first had an attack I was scared. The room suddenly tilted and I had no idea why. I was in bed for 3 days. When I was diagnosed and given exercises and I learned how to avoid certain head movements things got better. I started traveling again, using the exercises as needed. I had a attack in Guatemala but a couple of hours in bed in the hotel sorted things out. I began to apply mind-body techniques, learned through trial and error. including during trips as I tried to avoid vertigo on very curvy roads at high altitude in the mountains of Peru. Things got even better. I haven't needed exercises now in a long time. It seems quite clear to me that my condition has both physical and psychological elements. I try to work on both.
My sense is that there's some resistance to acknowledging psychological elements of illnesses. Perhaps it's a residual stigma. Illnesses are seldom "all in the head" of the patient; but they are also seldom without some emotional element that influences the course of the illness. Part of the problem perhaps is due to the fact that we are still discovering methods of engaging emotional resources to enhance physical health. I hope that more people will begin to explore this while simultaneously taking advantage of medical resources.
16
What used to be called agoraphobia has now pretty much been diagnosed as a disorder of the inner ear. Usually something is described as a mental disorder when doctors and scientists are too ignorant to figure out what it really is.
It would be nice if the author cut the docs some slack. If his problem is truly "systemic," what are they to do? So the answer is one more cocktail of drugs? Not exactly the recommendation I would want to hear. (Fortunately, I've "only" had BPPV - but on and off for years.)
5
Mr. Platzer does not differentiate between "vertigo", a spinning sensation of the self or the environment, from "dizziness", which is non-specific, and included vertigo as well as light-headedness and other symptoms that he describes. My vertigo, accompanied by vomiting, was caused by a vestibular schwannoma, a benign tumor of the balance nerve (Cranial nerve VIII), which was operated on 40+ years ago. The vertigo has never recurred.
5
Left out is heart monitor worn for 10 days. I went thru the "dizziness" diagnosis problems also. I had fallen and broken an arm. First was how much water are you drinking? Nope, living in Austin TX I was putting quart glass jars of water in the 'fridge so knew I was drinking about 3 quarts per day. Then saw the ENT (ears, nose, throat doctor) and it wasn't in my ears. Then went for the heart monitor, after was told I had some "backwash" but not to be causing the dizziness. And on to the MRI, which showed lesions on nerves running thru my spine, into my brain. So dizzy has continued to today. Rolling over in bed can causes me to be dizzy. But one doctor even told me that MS was a young person's problem. Surely I wouldn't have MS. Never went back to him. And have relocated to the Pacific NW, out of the heat of TX. Gave up my vision of retiring into as much social dancing as I could find.
4
Five years ago I had an viral inner ear infection called labyrinthitis.
Never have I experienced anything as debilitating- intense dizziness that made walking across a room a seriously daunting challenge, the vulnerability intense.
Gradually, over several weeks that faded but the imbalance persisted for over a year.
I taught myself to walk straight again by walking around the grocery store with a cart, consciously following the straight lines off the floor tiles.
I learned to compensate with visual cues for the balance my ear was not providing
And no, there was nothing the doctor seemed able to do to help
18
"It's your Thyoid," I always say to counter the doctors who always say, "It's not your thyroid." just because the lab tests come back as negative doesn't mean "It's not your thyroid." it is one of the commenist signs of hypothyroidism. so is your body temperature low? like 97.0? anyway find a functional medicine doctor for a thyroid workup, a real one.......Can Hashimoto's cause vertigo?
Conclusions: Autoimmune hypothyroidism is strongly associated with vestibular causes of vertigo, including Vestibular Ménière Disease. It should be recognized that hypothyroid patients may uniquely present with mixed features of peripheral and central vertigo severe enough for hospital admission.Feb 25, 2020
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I saw four doctors for dizziness several years ago. The first one diagnosed vertigo and gave me exercises to do. The second ER doctor suggested it was due to dehydration. The third had no suggestions and thought it would pass. It wasn't until I started rapidly losing weight and had menstrual irregularities that my gynecologist checked my thyroid -- I and I was ultimately diagnosed with Graves Disease (auto-immune hyperthyroidism). I had gotten so used to being dizzy -- powering through teaching classes, attending meetings, interacting with my peers and loved ones, walking down the street in a haze -- it was as if someone cured my dementia with anti-thyroid medication. I'm in remission. Anytime I have the slightest touch of dizziness nowadays, I get my thyroid checked.
18
I have had annoying dizziness episodes for several years, coupled with light nausea. I sensed they might be related to vision, as I did have a correlation with eye strain. I did a careful analysis of when it happened, noting exactly what I had done prior to and during the episodes. One thing clearly stood out - my use of an iPhone and large iPad. I did a series of experiments on myself and found that the more fast scrolling I did, the worse the symptoms were, and the longer they lasted. I have never had motion sickness before, but in describing my symptoms to those that had, they sounded somewhat similar. I now minimize my use of these devices, especially when I first wake up in the morning as I seem to be most sensitive then. I also try not to use them before a car or motorcycle ride. Definitely much better for me.
I’m not suggesting this is a large-scale problem, but I did note there are others with this issue by doing an internet search. Maybe others should think more outside the box as well…
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@Enlightened - I have been having dizzy spells lately and brought them up with my neuro a month ago. Usually, dizziness is the only warning I get before waking up in an ER with 2 IVs pumping me full of Lorazepam to stop a severe grand-mal seizure. But I told him I didn't think this was epilepsy related but might be another case of low sodium like I had 2 years ago. My med likes to drop sodium, jack up cholesterol, and one side effect is dizziness. I told him the worst case was a hot day when I got up out of bed to close a window and looked out a bright window and almost blacked out. So, now, I have been careful about making sure I get enough salt, am properly hydrated, and take my time getting up.
There are so many things that can cause dizziness so I think you were wise to try and look for a pattern. When I was first diagnosed with epilepsy, I was asked to keep a seizure diary hoping to find triggers or patterns. I don't get dizzy getting up from my desk and going to the fridge. But if I am on the floor and jump up quickly, I can expect problems. While I was working out the other day, a young gal did a handstand against the wall in front of me and I smiled thinking that that is not for me:)) And while I spent my life avoiding salt, I now embrace a post workout bag of chips.
3
After several doctors and 15 years later my eye doctor “cured” me instantly with prisms set in my prescription eyeglasses. Neuro lenses. Haven’t been dizzy since.
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I'm a doctor and don't want to disparage you but I hope you know that PPPD is a functional disorder, meaning that it's a disorder with no organic cause but that it's caused by a combination of stress/anxiety and depression--it's like irritable bowel syndrome, fibromyalgia, irritable larynx syndrome and the like. Doctors simply slapped a label on this but the underlying issue hasn't changed--stress and anxiety. You were prescribed Xanax (an anxiolytic), Zoloft (an anti depressant) and verapamil (a calcium channel blocker-which can help with some of the symptoms of anxiety).
So bottom line is, yes, stress/depression/anxiety can also produce physical symptoms. You are not crazy but our bodies respond to stress in different ways. There is nothing wrong with attributing your symptoms to stress/depression/anxiety. It's a way for your body to cope. Some of us manifest depressed mood with psychiatric symptoms. But some of us manifest it with diarrhea, abdominal pain, nausea/vomitting, hoarseness of the voice, chest pain, and yes, dizziness.
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@Brian
I respectfully disagree. There is always an organic cause. Symptoms are manifestations of biology, even when the biology driving that manifestation (symptom) is not identified, or possibly unknown at this time.
Think of the patient with every symptom you mentioned who has neurosarcoidosis as the root of all of those symptoms. There is always a biological explanation because we are biology.
1
@Brian However, when an MD attributes it to stress, the lack of follow-up treatment for that stress, which is clearly causing debilitating physical symptoms, is a problem. And no the treatment isn’t just “self-care.”
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@Brian Irritable bowel syndrome includes a very physical dysregulation of the muscles of the intestines, which can be detected very physically. Fibromyalgia often occurs after a physical trauma such as a car accident. You are more or less correct about mind/body illnesses, but you're also being simplistic.
For those individuals suffering from dizziness, it is helpful to distinguish among dizziness, vertigo, and lightheadedness. The physician should assess your medications to see if any of them are causing your symptoms. The physician needs to take a detailed comprehensive history and perform a thorough physical examination. There are oto-neurologists and neuro- otologists, and are specific for the ear and Neuro. A Neuro-otologist diagnosed the Ramsey Hunt Syndrome in my right ear after four weeks of excruciating pain. (Herpes Zoster Oticus-Shingles)
I had vertigo and nystagmus with that episode 25 years ago. Now, I get Ramsey Hunt Syndrome in bilat ears, mouth throat, and Zoster Ophthalmicus, plus on my scalp every three weeks for the past 25 years.
The Superior Circular Canal Right ear has a full dehiscence on a Special CT SCAN that my excellent ENT ordered. That causes Ataxia or an imbalance with my gait.
I also have Neurogenic Orthostatic Hypotension and Autonomic Failure, causing Synocopal Episodes, ie fainting. The symptoms are lightheadedness and blacking out.
Sometimes your symptoms and signs are caused by more than one disease process. If you are not getting excellent results, which takes time, BTW, you need to see neurologists, cardiologists, and other specialists at a medical center.
4
I had BPPV for years and eventually fell in the middle of a dizzy spell, was whipped off in an ambulance to a hospital where a young doctor correctly diagnosed it, gave me on the spot Epley’s Manoevre, at which I threw up once, after which the dizziness - vertigo - stopped. Like that. I had it once since, then never again. Take a moment to Google Epley’s - it is a simple postural routine taking a few minutes.
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@Anne A’Herran
Also fond of the BBQ Roll, which is similar to the Epley maneuver but works better for me. (For some of us, it comes and goes.)
3
I had the same vertigo, did 10 minutes
of this exercise at night for two weeks.
My nurse practitioner said she diagnosed it by watching my eyes do something weird (can’t remember what) when I looked left and right.
I got the little calcium rocks all back in their place and it never came back.
5
The eye movement is called nystagmus and is diagnostic for BPPV (I think, I'm not a physician). The repetitive involuntary left-right movement is the result of the brain receiving different messages about your location in 3-D space: one set from your eyes another from the vestibular system. The vertigo can be pretty nasty.
2
Taking issue with the continual perpetuation of the blatantly wrong perspective that a psychological illness indicates blame. So-called “dizziness” can indeed be a symptom of a psychological illness, such as anxiety. And if it is then it is no more the “fault” of the patient than a stroke in the vestibular system. Continuing to perpetuate the myth that someone with mental illness can just choose to “be better,” or “just relax” is a gross misrepresentation of the medical, biological, chemical, etc. nature of mental illness.
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I live in a dysfunctional country, with a mother who had dementia, I have OCD over things like locks and stoves, and I'm nervous every time I cross the street since I was run over. And yet I can't associate my occasional dizzy spells with anxiety. I only experience them under certain physical conditions, like getting up too fast. So to dismiss dizziness as part of a mental condition might not really help a patient at all. For instance, inner ear disorders can cause dizziness which manifests as a psychological condition, but is really a physical illness.
3
@J. Van Then how does the person move forward to treat the life disabling vertigo? Go to a psychiatrist (for the prescriptions)? Imagine how that scenario will go.
We have a system that does not reliably provide care, unless you end up in the ER. Doctors derive great financial benefit from this system.
@Rose Anne Doctors often don't get much financial benefit, though, especially PCPs. Insurers squeeze them pretty hard.
Just some tidbits from five decades of medical practice-
"Vertigo" implies a sensation of spinning, as if the the room were whirling around when one closes their eyes.
"Dizzyness" is everything else.
Ginger root, the real stuff available from health food stores, can occasionally bring dramatic relief.
Vertigo is a horrible condition that can be debilitating. I would NEVER trivialize it.
14
Don’t forget about POTS, postural orthostatic syndrome. It is a disease of the nervous system, a relatively new diagnose, and often dismissed by doctors as treatable with water and exercise. If that doesn’t work they send you psych medicine for pain.
As the mother of young woman with POTs, I have spent the last five years being flabbergasted by what doctors have said to both my struggling daughter, and to me her mother.
It’s time for doctors to take these invisible conditions seriously! And stop telling the sufferers they can fix themselves with cognitive behavioral therapy.
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@Morth So sorry. POTS has been getting more attention lately, and seems to be an issue for a lot of people with long-haul COVID. I hope your daughter is getting better and will find the right people to help.
BTW The Atlantic did a great article entitled "Can Long COVID Be Treated?" that contained information about breathing exercises being used for POTS, to help retrain the autonomic nervous system.
1
My dizziness came after I ate. I would have to lie down on the floor after meals, including at work! Finally my boss, tired of seeing me on the floor, suggested I see a doctor. After consulting an allergist, I learned we can become sensitive to foods as we age. Sadly, I determined my dizziness occurred whenever I ate wheat gluten. (I sure miss wheat gluten.) Almost six years later I have had no bouts of dizziness since I gave up wheat gluten. I am gluten sensitive not allergic. I hope this helps someone else with bouts of dizziness!
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I’ve been on a strict gluten free diet for five years since my celiac diagnosis. My dizziness and vertigo episodes started well after I went gluten free. Mileage varies.
1
Can't believe this entire article makes no distinction between dizziness and vertigo (spinning), which are quite distinct.
Or that it doesn't mention vestibular rehabilitation, which can be life saving. The Ear Institute at NYEE of Mount Sinai in NYC is very good for rehab.
15
I kept being diagnosed with allergies for many years of dizziness and feeling like I had a stuffy ear. Then one day, a doctor who was subbing thought to say I should get my hearing checked — at age 32. Turns out I had otisclerosis in one ear. A surgery later, I still get dizzy every once in a while (usually viral induced) but at least I know the cause
6
I was told by one of my attendings to never present a case to her with the word “dizzy”. After seeing enough patients who are dizzy - I understand why. Dizzy is vague and after history taking can involve a diagnostic spectrum from acute medical emergencies to that the patient actually isn’t dizzy but experiencing another sensation. Honestly - the people who diagnose “dizzy” best are Neurology and ENT. The worst, in my experience, are unfortunately, family physicians and that just may be a consequence of training.
7
I had months of vertigo in college that doctors couldn't diagnose. Finally, after tests and brain scans, I realized that air pressure changes cause it for me. If I'm in a city that has a subway, I'll get it after a few days of riding it. If I'm in a room with only one window open, this will also cause it. I assume it has to do with some kind of buffeting of the wind. If I have two windows open, I'm fine. Before I knew this, I had a college dorm room with one window and I kept it open all the time. My vertigo was so bad that I couldn't get out of bed for weeks, and people thought I was being overly dramatic or a hypochondriac. It was terrible not just for the vertigo but for the social judgment. I think my professors thought I was faking it.
13
As an MD with vestibular migraine myself, I devote a lot of time to examining as well as to talking with sufferers. Can you imagine my reaction to a blanket statement - in the headline, what's more! - like "doctors dismiss dizziness"? It is true that it can take a while to make a satisfactory diagnosis, and that sometimes we never manage to make one. However, was the procedure for making a diagnosis of vestibular migraine really so far off in your case? Seeing different specialists along the way who declare "their" organ system is normal does not mean all of them are clueless. They're doing their job, which in these cases means ruling out an underlying organic pathology that needs fixing. I also don't get why you seem to resent being told a finding is normal. What if the MRI had shown a tumour? - When I first had an aura of vertigo instead of the scintillating scotoma I'd had before, my mind reeled, considering all the nasty differential diagnoses: more likely Menière's than cancer but you still go deaf with Menière's... until the familiar unilateral headache took over. It was such a relief l I almost cried: thank goodness, it's only a migraine! Which, after all, is benign. Of course I still saw all the specialists you did. The cure proved to be reducing my workload. So yes, absolutely, educating sufferers about stress, balance and psychology is vital. In my experience, the patients who take offence at the attempt are those who need it most. How about a gratitude journal?
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@Ana Well said. I'm sick and tired of doctor-as-punching-bag journalism.
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@Ana Self-care is not the only thing that works for mental health care for some people. Every physician should learn this in medical school. Think of all the suffering and wasted time that might disappear if you all learned this and appreciated it.
1
Me too. Love NYT but we’re so tired of all the doctor bashing.
I’m struck by how people here keep blaming the doctors, then the patients, then back to the doctors…. I don’t know how to diagnose or treat these problems. I do know that many Americans with debilitating medical problems don’t get properly diagnosed and treated, sometimes with catastrophic results. I’m also led to believe that such problems are fewer in many other countries, but I don’t think our doctors or patients here are worse than elsewhere. This seems Ike a systemic problem, but I don’t know how to fix it.
Anecdotally, I’ve had dizziness over the last several years, worse this year, much worse in the last few months. I’ve had to educate myself about possible causes, often with comical results, but I keep trying. A brain MRI a few weeks ago showed I have a vestibular schwannoma (a.k.a. acoustic neuroma). Good to know, even though many of the possible outcomes sound pretty awful. My schwannoma hasn’t gotten much larger since an earlier brain MRI in 2019—that’s good!—but I do wonder why no one noticed it back then. Anyway, I meet with surgeons next week to plan treatment; that’s good too.
I also have Type D Brachydactyly, the silent scourge of young Americans (and me too). I had to diagnose myself for that one too, years ago. Doctors seemed uninterested, and still do. Western medicine has no cure. That’s okay for my brachydactyly—I hope!—but not for all these debilitating cases of dizziness described here. Something Must Be Done, and I wish I knew what.
5
@John DeTreville Let me reiterate what I said earlier. Patients here are blaming doctors, doctors are blaming patients, and the conversation just isn’t moving forward.
I don’t know how doctors could better diagnose patients’ illnesses, or how patients could better present their cases to doctors. I do believe we could do significantly better—while spending much less money—just because so many other countries achieve just that.
But how can we get from here to there, armed only with a thousand truckloads of stink-bombs and conversation-stoppers? Rethinking all these counter-productive Comments sections might be a good first step. I’ll have much more to say once the Times gives me my own column. (I’m available.)
4
Watch Jennifer Brea's film, Unrest - there are plenty of people who are bedridden and undiagnosed and untreated, all over the planet. On the other hand, a lot of countries have banned toxic chemicals that are still used here, so I would guess that probably causes a lot of illnesses here that we don't see in other countries.
1
@John DeTreville I think this comments section has been a particularly useful one. I'd like to thank everyone who has participated, including you. And it sounds like you'd make a great columnist.
Dizziness cannot be visualized by medical tests and there is no effective treatment for most people. The author’s doctors ruled out visible and treatable conditions. He is achieving a mild amount of benefit by taking anti anxiety/antidepressants. He blames his doctors for not having a magic wand and is happy to have a label for his symptoms which in reality is no different than calling the symptoms dizziness
If knowledge is not available what does he expect the doctors to do? He may as well ask them to explain what was there before the Big Bang. Guess what? No one knows.
12
For about ten years, I had outbreaks of dizziness accompanied by fullness and hearing reductions, usually in one ear. I was diagnosed with Meniere's Disease and treated with a diuretic that was supposed to restore the sodium/potassium balance inside my ears. The medication did seem to help, and I did note a strong tendency to have problems after a salty meal.
The Meniere's largely faded after about a decade, although I now have some residual issues in the right ear, including some ringing and occasional reductions in hearing acuity.
My advice: look for a connection to sodium intake. There a are obviously many potential causes of dizziness, but Meniere's should be considered a candidate.
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Honestly - no one should have missed this diagnosis.
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@Resident
I may have been unclear: the problem was diagnosed quite quickly; it was not entirely eliminated by the treatment, which included my own efforts to decrease sodium intake.
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I have read all the things that doctors can think. However, don't they ever think of a most simple thing: vitamins and supplements can cause dizziness to a person. For ex: myself, I can't take several supplements since they caused dizziness in me such as: Glucosamine, Chondroitin, Biotin, Magnesium, Lutein, Zeaxanthin. How do I know that? Each time I took a new supplement, I wrote it down the date that I took and watch if anything strange feeling or dizziness happens. Any supplement I used that my body doesn't agree, dizziness occurs after several hours taking it. I hope this info may help someone to watch what you take.
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Why I take only the most essential supplements for diagnosed health needs. D, calcium, lutein. Osteoporosis, lousy retinas. That’s it.
@Clara Wilkerson It's worth evaluating all foods and supplements when symptoms persist without a clear cause. A person can be allergic to or intolerant of just about anything.
@Clara Wilkerson - Yes. I took meclizine recommended for the dizziness and it made me even dizzier than before.
It’s great to see an article about this. I’ve suffered from vestibular migraine for decades. It started after a very bad upper respiratory infection. I underwent a zillion tests, including having ice water poured into my ear and sitting inside what looked like a lampshade with stripes on it. I was hooked up to electrodes and was monitored as the lampshade was spinning. It was medieval. I’m heartened to read that many more specialists are available now. When I developed this problem, which is totally invisible to others, the most comfort I got was from an article in a collection called the Medical Detectives (1980) by Clarence Berton Roueché, Jr. The piece was called “Essentially Normal,” a title which pretty much sums up the diagnosis so many of us receive.
Rouceché had a column in the New Yorker called Annals of Medicine. Would that more doctors read these things!!!!
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@Barrios something very lacking in modern medical education.....the compartmentalization of studying a human has gone too far.
1
@sin-ming shaw and yet we continue to live longer and longer.
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@Hope sometimes with a lot of pain and misery! This is fine to you?
1
I'm so glad that you were able to get a diagnosis and treatment that works for you.
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I know exactly how the author feels. I too have dizziness particularly when I rise in the morning. It goes away but i can tell its always with me. Ear fullness ... goes along with it and affects ones hearing. ENT guys are a hopeless lot, all they do is clean your ears, call it an operation and charge the insurance $550. Anxiety, depression ... who doesn't suffer from a taste of it? Once ya become an octogenarian, serviced by young doctors there's a complete disconnect of understanding. Drugs like xanax are addictive and the others even worse. The brain fog kills motivation ... ya just have to work through it. Good that the author has a family and remains active.
4
On Jan. 2nd I was fine, and on Jan. 3, I woke up unable to lift my head more than an inch without the room spinning violently. I tried to stand, and it was as though I was on a pitching ship in the open ocean during a hurricane. This had never happened before. My husband insisted I be seen, and I waited nine hours at a local ER, vomiting into a bucket. I knew I had vertigo, but the ER staff was so rude, to the point of being abusive, and offered no meaningful help. They put Benadryl in an IV hoping that I would sleep it off, then decided I had severe COVID, even though I had no symptoms. COVID test was negative. I left with a prescription for meclazine (seasickness drug) which helped a little. I saw my regular doctor two days later. He took one look at me and knew I had a viral inner ear infection that could take weeks to months to resolve. He said meclazine quiets some of the inner ear nerves, but that Valium quiets them all, and I could expect relief from a low dose of valium daily. He was right and it went just the way he said it would. Took two months to completely resolve. He’s an old school doctor who knows his stuff and I will be so sad when he retires. What happened at the ER was terrible. I know their working conditions are dreadful so I let it go, but they were shockingly bad at their jobs and unnecessarily mean about it. The ER docs I follow on Twitter as a group hate patients where the chief complaint is dizziness, and I’ve now seen that for myself.
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@Kate Flaherty i suggest you publicize the name of the hospital where you went. The behavior at its ER is not acceptable and should be condemned. it's awful and unethical.
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@Kate Flaherty Argh! So sorry this happened to you and so. so glad you found a doctor who knew what he was doing and helped you. If a person has not felt what you experienced, they have no idea how violently horrible the feeling is.
I have nights where I have to turn over in very small increments so the room won't spin. I also have migraines. Because of this article, I am going to try to notice if they are connected.
5
@sin-ming shaw Does anyone ever stop to consider that this happened during a pandemic? And that the horribly „rude“ ER staff were not only overworked and understaffed (as even Ms Flaherty herself admits) but had probably lost colleagues as well as patients to Covid? Yes, it can cause dizziness. And gastric contents are, of course, infectious... For all I know they may have been trying to get her to vomit somewhere where the risk for infecting others was lower than in the place where it was happening. One person‘s perception of rudeness is another‘s perception of stress. Reflex indignation is rarely helpful. TBH, I‘m glad we still have ER staff at all. I couldn‘t have done that particular job for more than the couple of years that were mandatory during my training and I take my hat off to everyone who can stand it. It‘s demanding enough as it is.
Total heart block can cause lightheadedness-essentially the electrical pulses beginning in the atria of the heart don't reach the ventricles so the ventricles sit out a few beats. At least an EKG can detect this and a pacemaker can fix it (I hope).
2
The neurologist did a CT and MRI to rule out Parkinson's? That's weird since Parkinson's experts say no imaging can lead to that conclusion. Perhaps another example of non-specialists getting into territory they don't belong.
1
@Allan A neurologist is a "non-specialist getting into territory they don't belong"?
The author did not say that the CT and MRI were performed to exclude Parkinson's. He said that the neurologist told him there was "no tumor" and no MS, which were clearly the reasons for the imaging.
3
Dizziness is a exceedingly vague word. It can mean many different things to different people. I would argue that the word is so vague as to be useless in describing symptoms. The article seems to be referencing vertigo. However "dizziness" as a symptom can also include feeling faint, off balance, generally weak, nauseated, vision problems, and anxious. So a break down of "dizziness" potential causes include: the vestibular system (vertigo), circulatory system (faint or lightheaded), central nervous system (off balance), infection, metabolic causes (generalized weakness), GI system (nausea), and the psychological stress of not feeling well (anxiety). Each of these subheadings has its own rather exhaustive differential diagnosis as well. So saying that doctors are "motivated by the insurance system to conduct exams and tests, rather than spending time talking to patients" is a disingenuous swipe at the practitioners who were trying to help and in fact eliminated many of the possible causes of the authors "dizziness." I have deep sympathy for patients who suffer without a diagnosis. Medicine is far from perfect and patients are often frustrated to experience this first hand. I too wish that doctors knew everything and could restore all ailments to baseline function with a single pill but this is not the world we live in. "Dizziness" can be a very complex complaint.
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@Jessica :
An excellent and concise summary of the issues. I don't believe the author clearly described his symptoms - e,g, a sensation of rotation vs. lightheadedness, imbalance, etc. I would add that "dizziness" is an imprecise complaint.
.
3
@Jessica YES!
I have practiced medicine for more than 50 years. The one complaint I hate to hear about from a patient is dizziness. Yes of course that is my job, but the symptoms are very variable ranging from transient lightheadedness to paralyzing room spinning vertigo, and the neurological exam to evaluate it is tedious and almost always non revealing so initial attempts at diagnosis are most often futile. Is this someone who just needs to drink more water or is this person going to walk out of my office and have a devastating stroke. Should I send him or her to the ER, or for a stat brain MRI, or just reassure. I am not blaming the sufferer but except in those rare cases where you make the diagnosis right there, you always worry.
11
@Jake
What to do? Test for everything. That's how she found my Lyme. I had so many blood tests that the lab told me to come back 4 times so I wouldn't pass out from how much blood they had to take. Yes, and an MRI.
She took my entire history. It took over an hour and cost big bucks.
She had me take blood tests for Lyme that were the more sensitive ones - the ones doctors pass on.
If someone is complaining for dizziness for weeks, months, or years - test them for everything.
Guess what. Within 10 days she had the diagnosis. There they were. The bands. UNMISTAKABLE - unless you don't have the time or dedication to the patient and need to just get them out of the office quickly.
I was on oral antibiotics and antimalarials for 5 months.
Guess what. No more brain fog. No more unexplained exhaustion. I've lost 12 pounds. I've gotten 2 promotions. I exercise regularly. I can meditate now for more than 3 minutes.
Patients with dizziness need patience.
Test.
15
@Jake Does asking questions not help in the diagnosis?
So basically, science cannot yet diagnose this particular set of symptoms, so the doctor tells the patient that their problem does not exist.
8
@Miriam
No, not at all. The doctor tells the patient that she can’t find the source of the problem, not that it doesn’t exist. Frustrating, yes, but two very different things.
13
@Miriam My neurologist told me that the medication that "works" provides the diagnosis. After loads of testing, I'm on the "try this" treadmill. So far, no diagnosis.
1
@HughCC Often, sadly, the doctor DOES tell the patient that the problem doesn't exist.
Those who suffer from ear pressure/hearing loss (usually in one ear)/tinnitus & vertigo try to get tested for Meniere’s Disease.
I was diagnosed last June. Working with an upper cervical spine specialist helped me and I haven’t had an episode since December. I also take L-lysine, lemon bioflavonoids and ginkgo.
Good luck!
2
I was diagnosed by a neurologist as having Migraine associated vertigo, as I did have full blown migraines very often, as well as occasional full blown vertigo at other times. I have infrequent migraines now, but still have the tinnitus, dizziness, and the occasional vertigo. I've found that the B vitamins have been extremely helpful, as well as magnesium. Lately I have started taking iron supplements (ferrous bisglycinate) and after two weeks am feeling more energetic and steadier on my feet. Apparently even subclinical iron deficiency can cause dizziness associated with vascular or neurological problems.
5
I have lived with chronic bpv for years and have successfully used the Epley maneuver to mostly manage it. Recently, at a physical therapist’s suggestion, I put the head of my bed up on a couple of blocks commonly sold in sets of four, to apartment and dormitory dwellers to provide extra, under-the-bed storage. I use them to make the head of my bed a few inches higher than it’s foot and it’s reduced my bpv episodes and their severity.
10
As an audiologist I see dizzy patients on a daily basis. We have very specific test that will examine the function of the vestibular system. If an audiologist is not involved in your dizzy care then you are missing a critical piece of the puzzle. We are the vestibular experts. Worth reaching out to an audiologist to get more information and to make sure you are being completely cared for.
19
@B.Rose
Good info; thank you!
4
Thanks for revisiting your experience. I think that it's important for us patients to keep in mind that the better we are at describing symptoms, the length of time we've experienced them, and any changes -- the more likely we are to get close to a diagnosis. And maybe treatment.
For Doctors, restrain yourself whenever you are about to tell a patient that it's just probably stress or anxiety or depression. Or age.
Episodes of vertigo last fall plus balance issues finally sent me to my internist ( because it was obvious it wasn't really safe to drive when a quick turn of the head could set off the dizziness)- a good listener who referred me on to a physical therapist for a vestibular evaluation. The extreme vertigo was BPPV, but there was(is) something off balance-wise -- in the postural-perceptual connection. So I keep exercising.
The lack of a grasp of the etiology of these conditions is frustrating. Last year, like many, I had no viral infections -- as far as I know. I did suspect a particular med -- but this isn't a known side effect.
I've got a bit of an obsession with balance issues. My own mother had serious problems - starting at the age I am now. Her symptoms (in retrospect) fit the signs of Normal Pressure Hydrocephalus, NPH, which if not caught and treated in time destroys balance and causes a variety of dementia. The Alzheimer's organization site suggests that 80% of those with NPH are NOT diagnosed ( while alive, they are identified via autopsy).
3
Thank you for the paragraph that admonishes doctors not to blame anxiety or depression. I for one am willing to hear “I don’t know “ from my doctor if that’s the situation.
My mother’s brain tumor took several years longer than necessary to diagnose because of such a situation. After her doctor left practice her new physician said “I don’t know” and sent her to a neurologist who immediately made the correct diagnosis.
8
@Cheryl
SO I'm being compulsive- here are the common symptoms of NPH:
* Difficulty walking that's sometimes compared to the way a person walks "on a boat," with the body bent forward, legs held wide apart and feet moving as if they're "glued to the deck."
* Mild dementia that involves loss of interest in daily activities, forgetfulness, difficulty completing routine tasks and short-term memory loss.
*Decline in thinking skills that includes overall slowing of thought processes, apathy, impaired planning and decision-making, reduced concentration, and changes in personality and behavior.
* Loss of bladder control, which tends to appear somewhat later than difficulty walking and cognitive decline.
[retrieved from: https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/normal-pressure-hydrocephalus ]
Also see via NYTimes.com
https://www.nytimes.com/2004/02/10/health/cases-a-mind-emerges-joyfully-after-years-lost-in-a-cloud.html?smid=em-share
and - A Brain Disorder Easily Missed https://www.nytimes.com/2009/05/26/health/26brod.html?smid=em-share
2
I cannot believe no one has mentioned what an ENT therapist taught me - the Epley Maneuver. It is a simple exercise that completely solved my dizziness, and every so often I do the exercise to stay stable. Look it up!
20
@wendy
It's great unless or until one's neck has become a chronically scary & uncertain area, where that type of movement is contra-indicated.
That change occurred for me years ago, and now when dealing with vertigo, it's one less tool in my toolbox.
1
A few months ago, I developed vertigo/dizziness - eventually diagnosed as viral labyrinthitis (an infection of the inner ear). I'd never heard of it previously and I was shocked at how debilitating it was at its worst. I would lie down and still feel sick from the room spinning. I received some medications to manage the symptoms and it took a few weeks to recover completely, and in the meantime every day tasks like driving took my full concentration. I would echo others here, many with different conditions than mine, on how severely these symptoms can affect quality of life.
5
I managed to see an ENT doctor when I first had a persistent dizziness. I knew it was vertigo. I looked up the specific exercises that seem to settle the little particles floating in the inner ear. I have a seven- to ten-day episode of this at east every six months. This has been going on for more than 15 years. During a particularly bad episode, I saw another ENT who taught me one simple maneuver to stop it. I might have to perform the maneuver twice a day sometimes, but it allows me to get out of bed without falling down.
8
After half a million doctor visits from Johns Hopkins to Atlanta Ga., i finally was diagnosed with Meniere's disease and it put me in bed for almost 2 years, but 7 years later I am 90% in remission but also have it daily, mildly, and have gotten used to the vertigo and tinnitus, so, yeah, it was pretty horrible!
7
I think what doctors should be saying to patients (after a thorough work-up has been done and no pathology has been found) is "We find nothing that is terminal and nothing that is easily treatable with our current knowledge. This does not mean that you don't have symptoms, it just means that conventional medicine does not have a cure for your symptoms, and the treatments we do have are not foolproof". Referral to a practitioner who specializes in dizziness may or may not produce results. Additionally I find it interesting that the author obtained some improvement (not a cure but some reduction in symptoms) using 2 medications commonly used to treat anxiety and depression. Just saying....
Barbara S.
Internist
6
I find it interesting that you said you cannot always tell what a disease is because our knowledge is imperfect but then infer that the doctors were correct in their prescriptions because they treat the same symptoms in another disease so the medical establishment is right in treating it like it doesn’t exist for now. Of course off label use drugs or the fact brain workings that operate in the quantum level may be beyond our understanding are harder to crack than just saying, “depression”.
There are few things worse than professionals such as doctors and lawyers using their credentials to double speak and cast doubt on people’s own experience whether things can can happen. It’s called gaslighting and it is very much not appreciated by your patients and the public in general.
7
For pediatric patients, it is even worse. They dizziness experts don't see pediatric patients. Other doctors are more likely to dismiss as malingering, anxiety, etc.
2
@Elizabeth nobody uses the term malingering anymore. And anxiety IS an actual condition that can cause dizziness.
1
@Hope Nobody except Elizabeth.
@Hope They do use that term.
I appreciate this article. I was having problems with lightheadness and dizziness for a number of years. I was beginning to feel very frustrated and almost ready to quit going to doctors about it. I eventually found out I had pulmonary hypertension due to pulmonary fibrosis.
4
I had a bad sinus infection starting in November 2019 (something that had never happened to me before), and initially, my symptoms included extreme vertigo. The vertigo went away after a few days but I was light-headed for about 4 and a half months after. It was an AWFUL experience. Mostly because I thought I would be disabled for the rest of my life.
In my case, very very luckily, my symtoms went away (I used a combo of antibiotics--that the ENT did NOT prescribe, btw, but I got a teledoc to prescribe) and Mucinex and a twice daily nasal rinse (that the ENT *did* tell me to take).
My heart goes out to anyone--for whatever reason--suffering from this. It's a terrible place to be.
11
I had my first debilitating bout of vertigo when I was 9 although I imagine I had suffered from milder episodes for years before that. My father suffered from vertigo his whole life and, sadly, i have passed it on to my son. No doctor I’ve ever complained to has taken even a passing interest in my vertigo even though it is a miserable, life-limiting, condition. No, I won’t die from it, that is, unless I have a severe spell on the highway with fatal consequences. But the misery, lost productivity, and constant fear of a spell it instills in me is far worse than other medical conditions I’ve had that come with a whole battery of tests and treatments. I hope future generations fare better than the three generations in my family who suffer from this life-long condition. But I doubt it.
3
Yes, traditional and western medicine have no idea how to treat this. I can't believe the author is taking very serious medication when alternative therapies work.
That's why I go to a Homeopath, Cranial Sacral therapist, Chiropractor, and Acupuncturist for my vertigo. It helps. And it often times works- total cure. I'm glad the author feels better, but not everyone wants to be drugged out of their gourd.
1
@Venus I so agree with you. I threw away the pharmaceutical drugs prescribed to me (which made me even more dizzy!) and now see the same professionals you mentioned that you see. Reflexology. Acupuncture. Chiropractor. My local swimming pool.
@Venus Yes. Try to find a DO who practices only manual healing, particularly someone skilled in cranial osteopathy.
1
@Venus Why 4 different people, that makes it seem like they also don't know what they are doing if it takes that many?
2
Keep reading, keep doing research. For me, dizziness would erupt when changing head positions (getting under the kitchen sink to fix a leak, for example or getting up out of bed at night or in the morning). I read a random article one day about odd food sensitivity symptoms. One such symptom for legumes is dizziness. To test that theory, I did not eat legumes for a few months, and the incidents went away. I got lazy (and I like legumes) and now the symptom is back. I wish science and medicine had all of the answers easily accessible but that is not the case. Keep looking.
8
@Bobbin Next to the bed, fixing the plumbing under a sink is often how positional vertigo starts. An otolith (ear stone, if you will) blocks a semicircular canal, and your ear says you are turning, when the rest of your body says you aren't. The brain is confused. This tends to recur. There are exercises one can do for it.
2
Dizziness is not the same thing as vertigo; I don’t understand why this author treats these term interchangeably.
19
@Barbara Orcutt Thank you for saying this. As a neurologist, maybe 25% of the dizzy patients I encountered (and I encountered a LOT, because nobody else wanted to see them) had vertigo. Hyperventilation is often a cause, and you have to test for it specifically by making someone hyperventilate until they are dizzy (we all will be) then asking if that is their symptom. It often is. I think vertigo is so scary to people that when it goes they subclinically hyperventilate, and that explains the persistent dizziness (not vertigo) that they have.
8
@Mike S. That is a really interesting and insightful comment.
7
This is a great article pointing out some of the many deficiencies in the medical industrial complex that sucks up so much of our money. There are numerous complaints that doctors tend to ignore, or, even worse, attribute to "psychological problems", which is another way of saying, "Don't bother me." I have had spells of vertigo in recent years, not nearly so debilitating as the author's, but I have found doctors uninterested in them. Ditto with my periods of recurrent spells of feeling faint, like I will pass out (occasionally, I do). Or, indigestion. And don't even mention chronic back pain. (They used to prescribe opiates and send me on my way, but now I need to go to a pain clinic for re-education.) None of these seems to be life threatening (unless I hit my head when I faint), and I have just learned to live with them. I know people who have much worse, so I give thanks that my ailments are not so bad, yet. Unfortunately, doctors are human beings, like the rest of us.
4
@Dennis Cox Dennis, that chronic back pain could be a reason for your vertigo.
1
The doctors of an earlier generation had the patience to spend time with you and arrive at a reasonable diagnosis.With modern specilisation doctors tend to focus only on their specialty-sub speciality without ever looking at you as a whole person.Often you end up visiting many specialists with a bunch of reports and none the wiser in the process. I had an old fashioned general practitioner who would look at you as a whole and arrive often at the right diagnosis.Sadly he passed away recently
15
@Ramakrishna It's not just patience-- many if not most modern practices demand that doctors spend very little time with patients.
But yes, hyper-specialization is a huge problem. I'm completely flabbergasted when, for instance, a person has to go to one orthopedist for their hip and another for their knee.
This author was eventually diagnosed and treated by medical professionals. Yet most of the essay presents doctors as "dismissing" dizziness, when what he really means is that specialists were eliminating some of the most important causes of dizziness. His ears, eyes, and MRI exams were clear--why is he angry at doctors about that? These people are specialists. We also have general practitioners. As the author himself notes, most (80%) of dizziness cases are temporary. He is in the 20%, yet he expects all medical professionals to identify and resolve his problem. GPs first state what is usually the case: that dizziness is often temporary. If it continues, they should recommend specialists. If they don't, go to another GP. Medicine does not have all the answers and does not claim to. Finally, this statement is of concern: "if the tests don’t reveal the source of the problem, they tell us it must be psychological, essentially blaming us." If a doctor "blames" you, then get a different doctor. Mental illness has nothing to do with blame. If you interpret the discussion to be about blame, then you should rethink your own attitude. Most doctors don't "blame," but offer suggestions.
24
@Hope Nice comment. I was a neurologist. Most of the things I saw had no treatment or very poor treatment. There is a big difference between not knowing what is going on and knowing exactly what is going on but not being able to do much about it. That issue was a big reason I left medicine. I could explain exactly why dizziness occurred in some people, but without a cure they would say, "He didn't do anything for me."
12
Neurology always struck me as being particularly thankless in that respect (our father was a neurologist). Sorry to hear you left medicine. It's true that rants like this article are not much of a motivation. Hope's comments are spot on. I can't imagine what practicing medicine in today's U.S. is like - did a fellowship there in the last millennium and recall being shocked by a billboard outside a hospital: "Who can help my injured child? Call 1-800-LAWYER".
4
@Ana it’s sadly funny because lawyers used to be the butt of jokes in the US, but now everyone just wants to gripe about doctors. It partly explains the reticence to get vaccinated here. So sad.
2
Lyme disease.
It hides.
I had it for at least 3+ years. I went from doctor to doctor. All in-network. None had the time or budget to figure it out.
I went out of network. I spent the big bucks. It was worth it.
Hidden Lyme disease. The doctor tested me for a whole range of possibilities all at once. And there it was. Unmistakable.
Conventional Lyme tests are highly inaccurate. I hear that it's like 50%. Flip a coin and maybe they'll find it.
Hidden Lyme disease. Exhaustion. Dizziness. Brian fog. Strange sensations in facial nerves.
"Maybe you should talk to a therapist."
"Maybe you should test me thoroughly."
"I'm just an internist. I don't know what you want me to do."
Hidden Lyme.
10
As a writer, it is surprising the author is not able to describe the symptoms better. Dizziness is hard to diagnose because the word is meaningless. Sometimes it means vertigo, sometimes fainting, sometimes clumsiness, anxiety, pain, fatigue, or any combination. The fact this responded to benzos/SSRI is therapeutic, but also could be considered diagnostic.
9
@CW You have to do specific things in the exam room:
Spin them around
Make them hyperventilate.
Have them stand with eyes closed
Lie down with head over the edge of a bed and have the practitioner move the head.
With these four techniques, I could diagnose almost all of the dizzy patients I saw.
Treating them was whole different problem.
6
Thank you for this. As someone who has suffered with chronic dizziness and vertigo for the past 20 years with little in the way of clinical interest or treatment, I can relate to the author. This article has been more helpful than any of the doctors I seen.
4
Make sure you’re adequately hydrating. I had a serious problem with dizziness that sometimes led to nausea. Drinking adequate liquids throughout the day and evening solved it for me. If I start to feel my head swimming, I hydrate, and it abates. Simple, but amazingly effective.
There are many illnesses that can lead to dizziness/vertigo, but I find it amazing that the most simple, basic possible cause isn’t addressed in this article, nor in the comments — that many of us just don’t drink enough water, and that dehydration can seriously mess us up.
I hope you find a solution. Dizziness is debilitating.
1
It was validating to see in writing just how debilitating dizziness is, though in my case, it's vertigo. On Dec. 2, 2012, I collapsed while getting out of bed with symptoms so severe, the EMT told the ER doc that she suspected a stroke. After many tests, I was diagnosed with Meniere's Disease. Since I had never heard of it, I went for a second opinion --to a top ENT specialist at the University of Pennsylvania. Meniere's was confirmed. I was surprised, actually stunned, that Mr. Platzer's article did not mention Meniere's--it's dizziness on steroids and life-changing. More people need to know about this disease.
19
@Marianne Pontillo I have had Ménière’s diagnosed and I have had it since I was 18 I am now 70 it comes in bouts
sometimes last months sometimes just a week I have severe nausea because of the dizziness and throw up a lot and then I can go years without anything
an emergency room doctor gave me some Valium when I was throwing up for seven days in a row and that is what I use when the first signs of being off-balance or dizzy
I take a half a Valium (2.5 mg) and sit very still with my head straight It has been a miracle cure, not cure but help for not getting the severe spins and the nausea and the throwing up
this disease is so weird because so many things can trigger it visual head position, bright flashing lights, loud noises it all triggers it in me but like I say I can go months even years without a bout
It’s learning to manage it I can only sleep on my back and I cannot turn my head to the side or sleep on my side I cannot look underneath things or tilt my head at all I cannot look up
and my balance is pretty iffy at times good luck to all that have this it is, at times so debilitating I haven’t heard much mention of the nausea and throwing up that I experience I think because it is so different for everyone it’s hard to diagnose and hard to describe exactly what Might help
3
I got the BPPV diagnosis along with depression and anxiety but they missed the hypothyroidism. Hard to tell which is the cause and what is the effect now. I’ve got a long road ahead to figure that out. The dizziness leaves me with zero confidence in doing daily tasks and errands, just getting from point A to B takes additional risk management.
8
Dismissing 'Dizziness'as just a transient thing, with spontaneous resolution in most cases, may lead to drastic results in those patients where it becomes a constant nuisance. Perhaps healthcare personnel ought to take this symptom more seriously and, to say the least, schedule a new appointment if it recurs. It's the least 'we' should do...if an arrogant stance of thinking being blessed as all-knowing is dropped as if it were a 'dizzying spell'.
3
@manfred marcus the doctor did not dismiss him, he sent him to specialists.
2
"And if the tests don’t reveal the source of the problem, they tell us it must by psychological, essentially blaming us for our own illness."
I take issue with the idea that mental illness would be the fault of the sufferer. This is the attitude that has cause the stigma for so many years. Mental illness is illness.
16
I was in the ER and the electrophysiologist who was just about to insert a pacemaker said to me, "you've been dizzy off and on for years and no one every thought to check your heart?"
14
Well, not all doctors dismiss it. When I had dizziness many years ago I saw a Johns Hopkins ENT guy by the name of Anthony Zee. He performed a test on the basis of which he diagnosed a vestibular imbalance. He gave me a sheet of exercises to do, which relieved my symptoms. There are many sets of such exercises on the Web. See for example: https://www.webmd.com/brain/best-exercises-for-vertigo
11
Only a doctor could use the words benign and paroxysmal in the same phrase.
7
@Chris Martin The author is still alive. So the problem isn't malignant.
6
@Chris Martin It is kind of a weird term, isn't it. But in this case "benign" basically means it won't kill you, I think.
Dizziness is scary. I went through several months of intermittent dizzy spells several years ago, and it was horrible. I was lucky--after a while, my doctor correctly diagnosed it as a sinus issue. Decongestants help a lot, but my balance will never be optimal. Never assume that dizziness is stress related until you have other possibilities checked.
4
Several years ago, I had bouts of dizziness. PCP and cardiologist ordered tests and found nothing. After six months of needing my wife to be in constant attendance, and hold my elbow whenever I stood up or moved around, I went to a neurologist -- who found nothing neurological, but he looked at my standard blood tests that other doctors had ordered and said "You need to go to the emergency room, right now!"
One of my blood test results showed I was so short of hemoglobin (which carries oxygen to every part of the body) that I was at risk of major organ failure.
2 days in the hospital getting 3 pints of whole blood fixed it.
I had been bleeding in my digestive tract for a long time -- bleeding to death, literally.
There are indeed many reasons for dizziness!
47
What happened to "Follow the Science"? The issue raised in the provocative title is not adequately addressed in the article, and the Comments provide a collection of personal anecdotes that are rarely constructive, reinforce patients as victims, and may distract people from seeking good medical care.
7
@Jack Actually, many of the comments DESCRIBE good medical care.
The truth is all these high-powered medical institutions from Mayo to UPMC have absolutely no tools to relieve vestibular distress. I endured the UPMC four-hour exam that only revealed what I already knew: my balance was nearly totally destroyed by an unknown viral infection of both ears. Sudden onset. I was then referred to UPMC neurologists who, examining my brain MRI, found no tumors, no evidence of concussions or any other cause for my new, devastating disability. The treatment? Valium and physical therapy hopefully to train other parts of my brain to take over the destroyed balance function. The result is only a minor improvement in the ability to walk without appearing inebriated.
The result is only minimal improvement. Vestibular disorder treatment is in the Dark Ages. Only physical therapy offers a semblance of relief and walking daily is a necessary task to maintain the little you gain from physical therapy. Nordic ski-walking is particularly helpful. The best that medicine can offer is a clear diagnosis of your devastating problem. The rest is up to your perseverance and tenacity.
9
Most relatable part of this article: every single symptom being attributed to anxiety or depression. While I'm thankful that my panic disorder was diagnosed early in life and that I can be treated adequately for it, it's drastically changed my relationship to the rest of my healthcare providers. It seems no matter what my problem is, the correct answer will always be that it's a side effect of my anxiety and that I can adjust my medication but there's no reason to look further. It really demotivates me to seek regular medical care when I'm made to feel hysterical constantly.
42
@AL the author had one symptom-dizziness.
2
I missed your first article but will go back and search for it. After years of a variety of diagnoses, from positional vertigo to stress (yes, I have plenty of that, I ended up being taken to ER with vertigo and constant vomiting (overridden by neighbors who I told I would be fine).
I was diagnosed with Meniere’s and in hindsight missed the signs. Years of tinnitus, dizziness, blurry vision at times and feeling like people were talking through a kazoo.
Bottom line: watching the salt in my diet has made it manageable. Along with an OTC allergy spray and OTC allergy med. Xanax is nothing to mess around with. I journaled and noticed when my ears felt full and what might have triggered the feeling that my ears are full, which comes before full on dizziness and vertigo.
The anxiety that comes with feeling like I may not be able to drive somewhere, honor a commitment or care for my disabled husband and son is awful. I keep a mental list of how to bring my anxiety down and that has helped a lot.
I hope this helps someone. Diet and hydration are relatively easy fixes and certainly can’t hurt. Everyone is different of course but the ingredients in food/caffeinated drinks and alcohol can affect your vestibular system. Be well!
14
@Sarah : I have several bouts of vertigo each year, and each bout is preceded by a feeling of fullness in one of my ears. That fullness is a surefire sign that I'm about to have one of my "spells," and I, too, start taking OTC allergy meds as a prophylactic.
3
@Sarah Hi Sarah, I too was diagnosed with Meniere's -- blithely, in an off-handed way, such as you exhibit this, this, and this and thus it's Meniere's. I should probably go for a full work up (I did have an MRI which thankfully showed nothing) but testing makes me dizzy and nauseous so I just continue to manage my symptoms. I take 1 mg of valium if I know bad weather is coming or a full day of meetings on the computer (both triggers), I avoid salty foods and dairy (also triggers) and when vertigo hits, I take 2 mg., lie in a dark room, and pray for it to end.
4
Dismissing a problem is another way of not-saying a simple "I don't know," a phrase I heard astonishingly little of during my 40 year career as a medical researcher-clinicians and researchers alike.
I suspect causes of dizziness are multi factorial in many cases.
14
@William White They are. It was a common diagnosis I made.
I couldn't treat dizziness well, but I usually knew what it was due to. I was a neurologist.
3
Those are heavy duty drugs. I would try Eastern medicine before turning to Western pharmaceuticals.
3
@T I would too, but still, often the pharmaceuticals work well and are worth trying.
Ok, let's go over it again what history has taught us imo.
1-If the dizziness is mild and goes away in a day or two, don't do anything other than to avoid any possible obvious reason for it, sinus congestion, etc.
2-If the dizziness persists see a doctor, get a physical/blood test and try to ascertain the cause.
3-If that doesn't work go to a few specialists to try and find out the cause.
4-If that doesn't work see a psycho therapist.
Any questions?
5
People should take time to memorize these movements when they are not dizzy, because when you are it's hard to watch a video!
Here is a video on Eply, but there are several more techniques.
https://www.youtube.com/watch?v=o4GV-EbnMfI
By the way--they work for me! It's amazing.
14
My wife and I, both 74, have in recent years been afflicted with vertigo. The same cure worked for both of us: simple physical therapy exercises.
My wife likes the moving pencil one, I like the flopping to one side and the other. Look them up on YouTube.
For me the improvement came within days, for my wife weeks. Anyone with this problem should try non-medicinal solutions first.
12
Support groups are one of the BENEFITS of Facebook we often dismiss.
4
@Roberta Ross People had support groups long before Facebook. And they often ended with coffee or a burger at the diner. Far more engaging.
2
@SHL But now we can meet with people who have similar conditions all across the planet.
I find relief of my not too frequent vertigo with the Epley Manuever, which is a rocking motion performed by a trained professional. I found one at the Mt Sinai ENT group.
9
@Vicki Azia
I've also been cured with the Epley but it's not so difficult that a "trained professional" is needed. YouTube has all the instruction most of us could want.
5
I’ve been suffering from dizziness/lightheadedness accompanied with all over body pains - specifically chest, followed secondarily by back and abdomen, brain fog, head “buzzing”, adverse reactions to caffeine and alcohol, and overwhelming exhaustion for about 6 months. I’m only in my 30s and I used to be an elite runner but have spiraled down to a point where going for a walk is too taxing. I’ve been to the emergency room 3 times during this period from episodes where I thought something was so terribly wrong. I was wondering if anyone out there has any of my symptoms or any idea what could be wrong with me. I’ve been to countless doctors with mostly the same negative experiences as mostly everyone else has expressed. I had a chest MRI as well as a brain MRI that supposedly came back good. My blood work has come back pretty solid for the most part. I did have one very patient and open-minded ENT who also diagnosed me with PPPD just a few days ago, but I am not sure if that would explain my all over body pain. I feel so alienated and alone and still am in disbelief that all this is happening to me. I just want to know what’s wrong - even if it’s the worst case scenario - and cannot handle one more person inferring I brought this upon myself.
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@Michelle
At about your age I had similar problems and had similar difficulty getting help. Eventually, in my case, I was diagnosed with Celiac, and going off gluten made me feel a good deal better. At some point the fatigue returned, but I was fortunate enough to encounter a doctor who suggested going off grain completely. That also helped a great deal. In your case, it might be worth going off gluten (and then grain) to see if you feel any better. Good luck.
3
@Michelle Have you been tested for Covid? Or did you have it?
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Get checked for Lyme disease and its co-infections at a responsible diagnostic lab.
4
I had two types of dizziness at the same time. One was caused by the drug venlafaxine (Effexor), and the other was caused by a crystal in my ear being out of place. I was listing to one side like a ship taking on water. Luckily, my PA suggested I got to a physical therapist who specialized in dealing with the inner-ear crystal issue. It was like magic. Just one treatment and the crystal went back into place. And in that moment I could feel that something changed, although I still had the other form of dizziness. I have continued to have the other form of dizziness, but it has seemed to ease over the past six months since I have been able to exercise more. From my personal experience and research, I would caution others in the use of antidepressants, especially without thoroughly vetting the drug. Often people experience a placebo effect, making it seem that the drug is doing something, but the side effects from these drugs can themselves debilitating. I have personally suffered side effects of many of them, the worst being Effexor (velafaxine). Be aware these drugs were not meant to be taken long-term/indefinitely & were meant to be used along with psychological counseling. They can have a serious deleterious effect on your brain, causing lasting damage. An added word of caution: Effexor can be as hard to withdraw from as heroin. Don't stay on it too long. I weaned off carefully, took my last dose in Sept. 2018 and my body still is not back to normal.
8
I suffer from vertigo. It started 16 years ago. It happens one to three times a year. Lasts for 12-36 hours. I haven’t found anything like it. Dramamine can help but not that much.
3
@JR “Our study suggests that for people with benign paroxysmal positional vertigo, taking a supplement of vitamin D and calcium is a simple, low-risk way to prevent vertigo from recurring,” explained Ji-Soo Kim, MD, PhD, of Chungnam National University College of Medicine in Korea.Aug 19, 2020......it is new google it ....I hope this will help you :)
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Benadryl worked for me during episodes of Menière’s disease, or now when I’m feeling slight vertigo these days.
1
Make sure to stay well hydrated. Drinking water throughout the day and evening resolved a serious problem with dizziness for me. If I forget to drink, my body reminds me with a swimmy brain and/or muscle cramps in my toes or my back. So I drink a lot. Life-changing.
1
My ENT says: "It is also possible that there are some pathologies that pass undetected by the ENT. PPPD can be treated by multi-sensory rehabilitative training. Ocular vergence and refraction problems are responsible for 15% of vertigo cases (and these problems are aggravated by heavy use of computers and small screens). The latter can be diagnosed by orthoptists who can provide rehabilitative treatment too. Note that the Xanax and Zyloft are also prescribed to anxiety and depression patients, and have side effects of their own."
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Just my 2 cents worth. I had dizziness on and off for a couple of years. Turns out my new primary care doc suggested it maybe medication reaction and he was right. I am 67 and lucky enough not to ever have med reactions so did not consider as I should. I have not read all the comments but this was probably mentioned but just in case. The med that got me was venlafaxine for anxiety and depression. He switched me to Zoloft
4
I wonder if for some people it could be related somehow to migraine and neck pain? I went through a 20 year period where I suffered from migraines (that seemed to be triggered by neck pain) that were often accompanied by dizziness, nausea, and projectile vomiting. But sometimes I had the dizziness alone. Also I could get a migraine for one day followed by up to 3 days of dizziness. I think time was the big healer but massage, stretching, acupuncture, chiropractic, and strengthening my neck and trapezius muscles were all somewhat helpful as well.
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@Kurt Both dizziness and migraine can be related to the neck. Glad you got help.
I have gone through all of this. I have learned to be very persistent in seeking health. Three things have helped me. A wonderful MS specialist, while ruling out MS, gave me this one word of advice: move. After listening to me talk for an hour (top specialist in NYC with very ill patients who most certainly had MS) she realized that I was spending my days doing little else than staring into one spot. Staring at a computer, staring at a book, staring at TV. Drinking more water has helped me. I started it to wash the gadolinium from the brain MRI out. And it transformed how I felt and how I looked. The third thing, I read The Wahls Protocol and implemented as many of the changes as I could. I don’t eat wheat, sugar or dairy.
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@Linda This is like my story. As soon as I heard it was ’benign’ I was happy, it wasn't a stroke, MS, or any recognizable neurological disease. My PCP said similar things, we don’t know how to treat it, but...stay active, move around, keep doing as much yoga as you can, and avoid alcohol, sugar, caffeine (that was hard) and salt. This has helped, vertigo is definitely a factor in my life, but I have ways to handle it. And the attention I have to pay to diet and exercise is not a bad thing
Personally I think it’s related to my immune system and inflammation, I’ve survived two bouts of cancer.
3
Brian, one answer is to find a Neurological Chiropractor. I had horrible vertigo and I went to a chiropractor in Tucson Arizona who gave me simple eye exercises. I did them 12 times an hour for three weeks and was cured. I didn't have it again until six years later, brought on by some deep neck massage, and was in Oregon. I did the eye exercises and it helped and when it was good enough to fly I went to I flew to Tucson to see him. I also got Acupuncture because my body felt like it needed my energy to be sent downward, and that helped a lot. She put the needles in to achieve descending energetics. It's all connected.
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Dizziness and lightheadedness often appear in neurological disorders like Parkinson’s. If a patient presents these symptoms as recurring, their neurologist will attribute them to chronic
1
in fairness to physians, when you hear hooves, suspect horses, not zebras. while it's important to continue to seek specialists if you're not getting better, it sounds like what you were ultimately diagnosed with is rare.
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I had debilitating vertigo a few years ago. So true that people who don't experience it don't understand. I was initially misdiagnosed with BPPV by another doctor at my PCP's practice and was told to do the Epley maneuver, which made things worse. When my PCP returned from out of town, I followed up with her. Luckily, she recognized right away that I had labyrinthitis -- only because she had seen one other case of it in years of practice. It took months to resolve itself.
9
After a fall that caused vertigo, I intense dizziness, visual disturbances, and nausea for several months. I was eventually “adjusted” at my doctor’s office and got better. As simple and understandable as my condition was, I made me understand how some people would want to die rather than live with an inescapable, intense discomfort for the rest of their lives. I have never before understood the impulse to suicide. My deep sympathy goes out to anyone dealing with this. Be brave! It can get better.
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I had persistent dizziness for several years - often so bad I had to spend 12 hours or so in bed. Like you I went from specialist to specialist and also being in NY got a lot of tests. Fortunately each new doctor got all the previous tests. I was finally diagnosed with Meniere's disease by a specialist who had trained the younger specialists. He explained that his was what is called "a diagnosis of exclusion." When you have absolutely ruled out every other possibility, it is Meniere's. It eventually comes with hearing loss in one ear, which builds so gradually you might not notice it. A hearing test sealed the diagnosis. The dizziness was coming from a fluid thickening in the balance center in the inner ear. He was pretty sure that salt was causing that and gave me a diuretic and a low sodium diet. It did the trick - although restaurant meals can sometimes tip the sodium back up and some mild dizziness returns. But the hearing loss got pretty bad. It is not an ear problem - the auditory nerve on one side deteriorates. I've never been happy with hearing aids - I can hear ok one-on-one, and it a crowd they amplify all the voices so don't help me hear the ones I'm talking to - even with all kinds of fancy settings.
It was a very long and disconcerting process, like yours, but now is just one more of those things you learn to deal with.
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I had dizziness two weeks ago. For me, it's caused by tree pollen allergies. I don't have other hay fever symptoms from tree pollen. Just my ears (eustatian tubes?) are affected.
2
I struggled with dizziness for years; it was absolutely maddening. I thought it was blood pressure related which has run high since I was a teen. Doctors never had answers except saying I had anxiety. About 10 years into constantly being dizzy, I began passing out frequently. The most scary episode on airplane traveling for work.
Fed up, I tried out a new doctor she and said, “I think this is one of two things. You need to see a cardiologist.” I was very confused at going to a heart doctor but she said more than anyone else had so I obliged.
The cardiologist ran the more serious test first—all clear. The second was out of a medieval storybook—a tilt table test. The nurse asks you to lie down on a table and then straps you in mommy dearest style. While on the table they stand you up at 90 degrees. The test is that they ever so slightly change the angle at which you are standing and monitor your blood pressure and heart rate and you describe any and I mean any changes you feel.
The test was supposed to last 90 minutes. At first I laughed over how silly the whole thing was—this is modern medicine? 5 min in I began to I feel hot, clammy, and dizzy. I could barely breathe or talk—I started to pass out. The dr was immediately able to diagnose me with an ‘autonomic dysfunction.’ The medicines he prescribed were described in the article and they have stopped my dizzy spells.
I was at peace and so happy. To give thanks, I baked cookies for both of my new ‘rockstar’ doctors.
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@Mo I wondered if the author's doctors had ever considered autonomic dysfunction. A simple "poor man's tilt test" may suffice instead of the torture chamber (I agree with you. The test is truly awful)
4
When I was a teenager I was bitten by a tick and the bulls eye rash developed. A few nights later I woke up feeling like I was on a roller coaster. From that day onward I would have terrible bouts of dizziness that could last for days. I told no one of the rash I saw and told no doctor about the dizziness. Anything could bring a bout on, sometimes but not all times stresses like taking the SATs, which I remember vividly because I could hardly read the test and it was important for my college entrances, but other times just catching a cold or nothing at all that I could pinpoint would start a bout.
It took 20 years for the dizzy spells to stop.
I assume that the bacteria from the tick was the culprit. Some forms of Lymes Disease can show symptoms and then retreat only to come back again. I also assume that the tick was not on me long enough to fully transmit the disease and left me with only these dizzy spells. As is evident to anyone reading this, I am a suffer in silence type person and did not want to go through the poking and prodding and sceptical doctor diagnoses as a teenager. because of my experience I believe that a lot of the chronic dizziness problems are due to bacterial or viral infections.
The columnist found some relief through medical intervention but ultimately it is undiagnosable with an eventual decline of episodes back to normal. Of course, being older I realize that ruling out possible causes like brain tumors or MS is a smart thing to do.
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Go to a doctor who treats Lymme disease. Because the bacteria reproduces in your body. So the number of bacteria you have is limited by your immune system, not by how many were transmitted when you were bit.
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Ménière’s disease causes intense vertigo, also. Physical therapy for vertigo saved my life by retraining my brain. Someone who specializes in vestibular rehab can customize a head exercise routine.
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My husband has bouts of vertigo which are always cured by a neck adjustment by a chiropractor. We learned this solution from my brothers who have had the same experience.
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Yes!!! A strong massage works as well. If I feel shoulder/neck tightness, I make an appointment. (I’ve had far fewer episodes since eliminating dairy and wheat too so believe it’s connected to that ol’ pesky inflammation).
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Although I have had some benign paroxysmal positional vertigo, the worst problems turned out to be a result of exposure to polyester made with formaldehyde. Newer polyesters don't seem to cause the reaction, but older ones such as fiberfill in pillows are the worst. One of my daughters has the same problem. Remember after Katrina when a lot of people were given mobile homes made with formaldehyde in the insulation and so many of them got sick? My first exposure was a polyester quilt my mother had in her guest room years ago. When I came to visit, I fell on the floor when I got out of bed the next morning. When I left the house I got better, but every morning my dizziness had returned. Finally deduced it was the quilt and once it was removed from the room and stored away, all the symptoms were relieved. It has happened again several times over the years and as soon as I found the polyester culprit and removed it all was well. I am particularly careful when buying decorative throw pillows and try to get only down filled ones.
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@Susan in NH I got it and other neurological problems caused by ethylene oxide exposure at a nearby sterilization plant. Polyester is also derived from EtO.
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I have also had extreme bouts of vertigo over the last few years. I notice that if I go outside that I barely notice it, but upon coming back inside it returns. All those straight lines I guess.
I had all the tests done that the author mentions, with no issues found. Finally the last specialist diagnosed ‘probable’ vestibular migraine.
What has worked wonders to relieve my symptoms: Claritin-D. I take it when I can feel a spell coming on and after a few hours I am basically fine. I continue to take it for about 3 days and stop. Back to normal. Someone on some board recommended it when I was searching for ideas.
Maybe it will work for you.
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So, when doctors attribute dizziness to anxiety and depression, it is aggravating, but when they work at a specialized dizziness center and make up a name for your diagnosis, and then treat you with medications for anxiety and depression, it is life-altering? Sounds like they are making a lot of money off of your fancy insurance.
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Thanks for this article, it resembles my dizzy 2019.
In February my GP diagnosed an ear infection, then labyrinthitis, and after a debilitating spell of dizziness in May, I called an ENT.
The ENT performed the Epley Maneuver and referred me to a vestibular physical therapist, who was the first to mention BPPV and vestibular migraines. I was given vestibular exercises, and each time I went in she performed the Epley until there were no signs of BPPV. The vestibular migraine symptoms were persistent, she ordered an MRI, (normal).
I was told am genetically prone to vestibular migraines (history of motion sickness, previous episodes of vertigo), and like other migraines, triggers are similar: salt, alcohol, caffeine, chocolate, processed meats, hard cheeses. Oh, and maybe stress. (and maybe even estrogen in my BC pills!!) And I was told that for me it could flare up at any time.
From my first inkling of something being wrong to me feeling almost normal was about 10 months. From looking at other comments I guess I am lucky. I quit alcohol, caffeine, cut back on other food triggers, did my exercises.
The path to the ENT and eventual credible diagnosis was initiated by me, not by referral from my GP. Unfortunately, we all must take responsibility and be proactive – no one is really looking out for us except for ourselves. My other advice is for young people to study to become vestibular specialists, the therapist I saw is one of the few in SF and is in very high demand.
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I’ve suffered from regular bouts of dizziness since I was a child, with it peaking during my university years, early motherhood and stressful work/family situations. Although it has always been taken seriously by the doctors I’ve seen, not one has been able to identify the cause. What I’ve noticed, however, is that during stressful and/or busy times, I forget to drink, leading to dehydration and oftentimes debilitating dizziness. If I catch it in time (often preceded by tiredness), I find that fluids and lots of rest will circumvent the situation. But, I’ve also experienced dizziness despite drinking lots of water and/or (non-caffeinated) teas. The more I drink, the worse it sometimes seems to get. What has worked to alleviate or remedy it altogether is simply adding a bit of sea salt or, in more dire situations, electrolyte powder.
It seems like a simple solution to a big problem, but dehydration/overhydration can happen easily.
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This is my story. Thanks for writing it.
I’ve seen multiple specialist over the past two years (ENT, Neurologist, Audiologist, Otolaryngologists- the majority of whom treated me like I was crazy, etc. (my favorite was a otolaryngologist at UVA who told me the use of words “destroy,” (as in “the symptoms have destroyed my life”) and “violent” (as in, “I’m experiencing violent muscle spasms”) was evidence that I was crazy and that I should just try yoga.
I’ve just seen a good neurologist at Georgetown who has suggested possible PPPD. My symptoms are of constant, severe dizziness and disorientation and a sensation that I am falling, that the ground is being pulled out from below me, like the sensation when you miss a step on a flight of stairs or step off a curb without noticing it- it’s that helpless, panicked feeling except it is all the time and not just a fleeting sensation.
I have great difficulty walking, riding in cars (I can’t drive with it) and it’s worse standing, in situations where there’s a lot of dynamic movement like a store and, interestingly, it’s worse when walking across a blacktop parking lot or crossing a road, perhaps because there are fewer visual points of reference with which to orient oneself.
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When the symptoms first hit I was training for another marathon but spent the next eight months completely disabled, unable to walk to my dumpster or even the 15 feet to my mailbox without great difficulty and tremendous disorientation.
Gradually I started jogging short distances around my block and the symptoms became marginally better, though I can’t work out in my community’s gym and do weights now at home.
The writer is absolutely correct that one of the worst aspect# of the disorder is feeling useless being unable to work or travel and missing family gatherings like weddings, funerals and the holidays.
I’m hopeful that with this new diagnosis and the coping techniques and medication ideas I’ve learned here, I can greatly reduce and better manage my symptoms to resume an active and fulfilling life.
Thanks for sharing your experience and writing this, Brian.
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Brian, implied throughout your article is this concept that a defined organic pathophysiologic diagnosis is acceptable yet a psychiatric one is somehow shameful and must be avoided. This is such a common view in society and so unhelpful.
It's as though a "hardware" (ie neurologic, eg MS, tumor, migraine) problem is permissible whereas a "software" (ie psychiatric, stress, anxiety) is not. We need to address and combat this pervasive approach, it leads to more anxiety and numerous unnecessary tests.
Yes, I'm a doctor and to some degree I'm defending my own here. As a cardiologist I see a lot of people with palpitations who are in a similar situation to you. I try to get across the concept that there are two factors determining your level of suffering, the condition you have, and how you choose (psychologically) to deal with it. Sometimes we can't really help the first, so we have to concentrate on the second. Best of luck.
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...and yet many of us have experienced our symptoms shrugged off as anxiety. It is a real problem (a not too distant mystery illness article here highlighted this). Of course anxiety is real and may be debilitating but it can’t be the blanket answer for the doc who doesn’t have an answer.
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Good points. I think the problem is when patients are simply dismissed as just having anxiety and depression.
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As a therapist perhaps it can be added that mental illness such as anxiety and depression are physical processes in the brain and felt physically in the body by people. In the most basic terms anxiety is experienced as over stimulation of energy and depression as reduction of energy (in other words chemical interactions). That is why medication has an effect. Along with talk therapy, exercise, meditation and biofeedback.
I suppose mental is a way of describing how we experience our thoughts and emotions through our brain and body. Also, anxiety and depression can be a reasonable reaction to how conditions such as these are diagnosed, treated and experienced day to day.
We need to have more holistic treatment and emphasize the mind/physical connection and how our nervous, hormonal and other systems interconnect. We need less separation between psychological and physiological processes.
1
Thank you for taking up this important topic. BUT: I was disappointed that in the outset you mix up VERTIGO with dizziness.
Vertigo is a well-circumscribed medical phenomenon, be it "paroxysmal positional" or due to some vesitubular pathology. Both are affected by posture and is a clear-cut problem of our internal gyroscope or higher level (central) position perception system, and doctors know what to do to locate the source of the problem.
Dizziness by contrast is much more diffuse, often just a fog of mind, and not "the world turning around you". Very hard to describe let alone quantify.
This is the reason why doctors dismiss dizziness!
How relieving it is always when a patient's "dizziness" turns out to be vertigo in the narrower medical sense because then we have a diagnostic lead for further tests.
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Migraine is the cause of much dizziness (technically vertigo) and it is a woefully underfunded medical research topic by the US Government.
1 in 7 people on the planet have migraine. Most are women who still suffer from the insult of being ignored by male physicians. Of the men, they tend to go undiagnosed. The reasons is similar in the sense men have been programed to think of migraine as a headache. But migraine is a genetic neurological disease and impacts the entire body. A lot of neck pain and digestive issues are probably migraine caused, for example. Other common migraine symptoms beside vertigo include hearing loss, tinnitus, brain fog, sore neck and shoulders, sensitivity to light, certain sounds (like plates being put in the cabinet), or smells and sensitivity to touch, to name a few.
As the author suggests, the first thing to do is book an appointment with a specialist in the neurology clinic at a research teaching hospital at a university. It might not be Johns Hopkins but usually is in your main “university of” medical center. Typically it has specialists like neurotologists/otoneurologist who can diagnose and offer treatment options ranging from new anti CRGP drugs to changes in diet (avoid aged or fermented foods) and exercise.
Migraine is a spectrum so, if a cure or effective treatment is found, in theory, most migraine types, including vestibular migraine, will be gone.
Migraine costs the economy billions of dollars and destroys lives and careers.
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I developed dizziness following a brain surgery called a Microvascular Decompression, to treat my chronic Trigeminal Neuralgia and Geniculate Neuralgia.
That was in April of 2018. My life has never been the same.
I went through 8 months of vestibular rehab for BPPV.
Then the BPPV resolved, but I was still dizzy and nauseous every day of my life.
Then I was diagnosed with PPPD a year ago.
I’ve been with a new vestibular rehab clinic that is really good.
Having said that, I am still unable to work or drive more than 2-3 miles.
I have gained helpful strategies for coping with the dizziness and I have learned how to modify household tasks, such as unloading the dishwasher.
But my thoughts of a “cure” fade every day.
I strongly suspect this may be my life. And I am just 53.
4
I used to experience 'dizziness' where it felt like the room I was in, all of sudden turned sideways, and dangerously it would occur sometimes while walking down a flight of stairs. Fortunately, I've never fallen because of this. Eventually, I switched from an M.D. to an N.D. naturopathic doctor, who prescribed some supplements that my body was missing, along with cutting out gluten from my diet. Within just a few weeks, any sort of dizziness stopped and I have not had a recurrence in over 3 years. So, maybe for some this could be food related.
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My mother had a brain tumor called "acoustic neuroma". When she complained of dizziness, the doctor followed a line of questioning aimed at alcoholism. Over and over he asked this 83 year old how much she drank. She does not drink. He did schedule an appointment with a specialist, but 6 months into the future. Long before that 6 month deadline she had collapsed entirely and been hospitalized. An example of a physician not taking dizziness seriously.
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Sounds like the original doctor DID take her complaint seriously, and this is why they made the appointment with the specialist. It is not the original doctors fault that it takes 6 months to get in with a specialist. (although primary care doctors are often blamed for this erroneously)
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One of the problems that the author refers to is the "siloing" of specialists, their reliance on tests, rather than patient interaction, and essentially missing the forest for the trees. While a specialist who deals in dizziness is a good idea, one could argue that there is then a need for specialists in every possible multi-system problem. Or, maybe better staffing of primary care with physicians who are well-compensated and not forced to function as if they are on an assembly line would be a good solution as well.
I am married to an excellent primary care (family medicine) physician, and have observed her approach to practice and treatment for more than two decades. She is on the faculty of a residency, and I have also paid attention to how she and her colleagues train their residents. From the stories I hear back from the community about how my wife works with her patients, from the end-of-day venting/storytelling that my wife engages me with, and from hearing about the less-than-ideal work done by many specialists, I have come to the conclusion that a GOOD primary care doc, who listens to their patients, knows their own limitations, and practices evidence-based medicine (with a grain of salt based in their judgement and experience) can see what is going on with patients in a much more holistic manner. Having treatment managed by a good primary care doc seems to result in better outcomes (and potentially lower cost due to fewer unnecessary procedures).
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@pdrothstein - I heartily agree! Fortunately, our family has found a truly wonderful PCP and it has made all the difference.
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When I feel dizzy or spacey, It’s usually because my back has tightened and my neck is “out”. An adjustment by my chiropractor solves the problem. I wish it were that easy for all people who suffer from dizziness!
7
In some patients, dizziness can be caused by POTS (Postural Orthostatic Tachycardia Syndrome), a condition that is underdiagnosed in the general population.
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@LSG For many years, I have suspected that the under-diagnosing of POTS is due to the fact that most sufferers are women, and so many physicians dismiss women's pain and suffering as "all in their head." It is the paragon of sexist, medical gaslighting.
2
I experienced terrible vertigo several years ago, following a period of extreme stress. I went to the ER and the doctor noticed that me eyes weren’t tracking properly. I went home with anti-nausea but was referred to Barrow Neurological Clinic. The therapist there was outstanding and determined that my eyes weren’t tracking properly left to right and vice verse. I have probably had a mild version of this condition for years. She gave me vision exercises to do which have helped tremendously. This is an unusual cause of vertigo and I suspect it’s related to my many years of being a fast reader. I do wonder if this cause of vertigo is being missed in others less lucky than myself. I hope my story may help someone, as this condition can often be debilitating.
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My vestibular injury from a virus acquired from a 2 1/2 year. I had adequate medical diagnosis. It is never an issue that comes up as a focus of concern about why I was disabled from full work status. It served as an obstruction to the rapid dx of my eventual lymphoma., most likely acquired from pesticides and glyphosate.
Though I have a strong story attorneys have not allowed my case to join class action against Monsanto.
I remain impaired and shamed by my medicine list. Recently I begun Lion's Mane, mycelium and fruiting body, as a plant medicine. 6 months out I will have a better idea at 18 months.
I am a fully credentialed physician with 15 previous academic appts in US and Canada. Illness can happen to anyone...tomorrow. (may all persons be as well as possible, as safe as possible).
May we carry generosity, non judgement, kindness and compassion in our lives for ALL PERSONS we encounter as well as those we do not encounter.
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My husband and brothers all get relief from dizziness by visiting a chiropractor.
5
One must keep in mind, that if rehydration (6-8 glasses of fluid a day) is adhered to correctly, that all liquid should not be just water -drinking electrolyte sports drinks as part of the regimen will offset the possibility of hyponatremia which which, in itself, may cause dizziness!
5
I've had BPPV (benign paroxysmal positional vertigo) since 1985 and medics tend to mostly shrug... not only about vertigo, but most symptoms I report; about anything, really.
They dutifully write it down; maybe they'll order a test, or maybe not. They tend to be pretty relaxed. Once I tell them I've got osteoarthritis, everything somehow becomes a manifestation of it, and of course, there's nothing they can do about osteoarthritis.
They definitely don't even pretend to "feel my pain".
We laugh at the Dark Ages, of leeches and the "Four Humours", but I think in a hundred years or so they'll laugh at us, what with our corporate medicine and horrendous diets and the thousands of new & toxic chemicals with which we've flooded all planetary life, every ecosystem, with minimal to no concern about any consequences, that may in fact be responsible for the many disquieting symptoms we feel, and the deaths of millions of our fellow creatures, like those whales that wash up dead on our shores with crushing regularity, filled with 60+ pounds of plastic in their guts.
Having written that, let me try to be a little helpful, not merely critical. In NYC, for my BPPV, I've found a lot of respectful help at H&D Physical Therapy.
Their Vestibular Therapists are great and they have 3 locations in Manhattan. I am in no way affiliated with them, except in my role as patient.
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Ever try Cawthorne Exercises? You should. They work for me.
1
Thanks a lot NYT for the terrible zig-zag moving graphic accompanying this article. Triggered a brutal migraine. These sorts of patterns in motion can trigger both migraines and seizures. To include it on a health article about dizziness (a common problem for people with vestibular or chronic migraine issues) is just negligent.
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@Marie Absolutely right; I looked at it for maybe 3 seconds & knew I had to move on- PRONTO!
That's a dangerous graphic!
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@Marie agree, this is beyond stupid! Come on NYT turn it off!
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Okay, please just stop this nonsense. The drugs which worked MIRACLES are benzodiazepines (same family as Valium) or antidepressants.
Their has to an standard not just your statement "I feel dizzy". Because right now I feel dizzy and tomorrow morning I will feel dizzy again! Specifically, I will feel dizzy right before and after I speak with my a) Husband. b) Children. c) my parents. d) Boss. e) accountant f) therapist. g) whom or whatever!!
Look, you had a great workup! There are somethings that we don't know enough about and hopefully we will know more in the future (like cancer, diabetes, hypertension, heart disease or faster than light travel or transportation!) Suffice to say that is all we got now.
7
Brian, if you’re still checking the comments... I have PPPD after vestibular neuritis in Jan 2019 (mid 40’s female, never a dizzy person before). Finally found a doctor that could not only diagnose it, but could also offer help. It was my 3rd neurology consult, and 3rd dizziness specialist. That doesn’t include the 2 other ENTs (it was quite the year!). The neuro-ophthalmologist started me on 20mg Duloxetine once daily. Symptoms have been so much better! I’ll try to go into detail in a separate comment tomorrow - long day & it still builds. Long explanation short: the new thinking on PPPD is that it’s a genuine neurological condition (not psychological) where nerves/ brain processing over activates to compensate for the loss of nerve function during the initial VN assault. My game plan is a year on the meds, & hopefully things will have calmed by then.
11
I had Vestibular Neuritis (VN) in 2019 and later the same year had a truly life threatening condition. VN was by far the worst experience. Vestibular Physical Therapy was a life saver. With diligent exercises three times a day for eight weeks I was able to regain ~98% of what I had lost. As a side benefit, I'm much less prone to motion sickness!
I am also a physician and appreciate how difficult it can be to meet the needs of patients with complex, multifactorial problems. Thanks for a great article on a complex issues.
21
Thank you for bringing this medical issue into the light again. I've found the articles in The Times and many reader comments to be very helpful as symptoms, causes (if any can be determined), and treatments can vary widely. But the search is on for me and it'll be a long one. ..hopefully worth it. The spinning room, gait like a 'drunken sailor,' severe nausea and sometimes vomiting, and, for me, prominently featured is a feeling of being 'hit by a bus,' where I immediately lose all energy and have to lie down for a few hours. (Lying down makes it all worse unless I can finally sleep but upon waking and standing, I find most symptoms are still present.) Thank you to all the sincere readers and authors out there who help with their sharing of information. And it truly does help to know one is not alone.
19
I experienced very similar symptoms, and pursued many of the same specialists as you write about. My dizziness lasted over a year. What I think finally helped me was going to physical therapy, which really did restore the connection from the mind to the body, and I also worked with an acupuncturist and a chiropractor. I’m not exactly sure if one thing helped, or if it was the confluence of all things that I tried, but now I am relieved to say that it has not returned! thank you for sharing your experiences!
7
If you've checked with your doctor and perhaps a second or third doctor, and they have found nothing to cause the dizziness, you might want to try the "Half Somersault Maneuver" developed by Dr. Carol A. Foster. My experience has been that when I use the "The Half Somersault Maneuver", it always works for me. Look it up and you'll see why it works, and that it's easy to do. Also I like to use ear candleing about once a year to remove the ear-wax that can build up in the ears. This requires having another person's assistance. Ear candles can be purchased at most health food stores.
2
"Dizziness" bothered me for years. As a retired physician, I was only too well aware how dreaded this symptom is from a "provider" viewpoint. After discounting my medications as a contributor, I turned out to be wrong and have felt better since. Unfortunately, causes for "dizziness" can be multifactorial, as I believe they are with me. But yes, "it's all in your head" can be both true and untrue at the same time!
10
Thanks so much for sharing your story. I had VN about 2 years ago that triggered vestibular migraines (and maybe PPPD). I saw an otologist in November who diagnosed me and it makes sense. He’s started me on supplements and diet changes and I’m doing better but we may do more. It’s just such a breath of fresh air to be working with a doc who seems to know what he’s taking about and can help me. Vestibular conditions are so hard to explain to people and I don’t think tou can understand unless you’ve been there. I love that this article was in the NYtimes! We aren’t alone - there are so many of us trying to get back to good. I can’t wait to read your book and I hope you continue to improve!
13
HOSANNA!! Finally a column that deals with Chronic Dizziness and its affects on what used to be ‘normal life’! Having Nystagmus (which causes your vision to approximate that of a hand-held jerky camera), the addition of chronic dizziness has laid me low quite often. Reeling around one’s home like a drunker sailor is dangerous and depressing. Couple that with betting older and you have the perfecta ‘Trifecta’ for accidents and falls. I am encouraged by this writer’s advice. Thank you very much for the insight!
[email protected]
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@NANCY L. ISENBURG
Thanks so much for reading. I'm so sorry to hear you're struggling, but I do look forward to your thoughts on the novel. Best, Brian
3
I have been very fortunate. I have periodic bouts of vertigo which can last minutes to days. No one ever told me it was ‘all in my head’. My first attack happened in the middle of the night and got me to the ER where they gave me meds to stop it. They sent me home the following morning with scrips for Valium, meclizine (antivert) and promethazine. I keep the meclizine with me so if I get a bad attack I can take it. I’m thankful I was so lucky.
7
I have vertigo intermittently, with the last occurrence being so bad I vomited. I have had a huge amount of help from my vestibular physiotherapist. I can do the Eppley and Semont manoeuvres myself, and I do regular head and eye exercises twice daily, both of which seem to manage the vertigo. She really has been a godsend. I cannot imagine how people manage with constant vertigo.
5
After 3 years visiting doctors of different specialties and numerous MRIs, a Neurologist told me: I know you have nothing that will kill you, lets try the last resource: hydration. Take 2 lts of water during the day and until 7 pm.
And that was it, immediate solution! after 2 years following his advise, I continue with no more dizziness and equilibrium problems. It is worth to try!
6
YES!
Why is the simplistic solution not tried out first?
I was missing activities because I had to stay home to vomit from dizziness, until I learned that I simply wasn’t drinking enough to keep my body functioning properly. As we get older, a lot of us tend to lose our thirst trigger, so we need to remember to drink throughout the day and evening.
In my experience, it was Dr. Google who cracked the case. No specialists; no tests. Changed my life.
Water. It’s worth a try.
Hi Brian, thanks for your article. I don't think it's the case that doctors ignore dizziness but rather they don't know how to assess it or treat it which leads to their lack of insight and concern. PPPD is really a psychiatric diagnosis which has become the diagnosis du jour for people like you, but it's not a real disease and perhaps doesn't even really exist. You should at least acknowledge Thomas Brandt, the neurologist in Germany who first conceived of this syndrome which he called by a different name. And yes, migraine is now considered the most common cause of vertigo but there is no diagnostic test for it at this point. Finally, it goes without saying tha tthere are more excellent vestibualr centers than the ones you somehow chose, some that are a lot closer to NYC or even in NYC where this paper presumably reisdes. So you do the Times readers a diserervice by suggesting a bunch of hospitals that aren't in the New York area, based on some vague 'reputation' no doubt provided by their publicicfty departments. But slothful medical resporting is what one expects from the Times and given that very low threshold you did a nice job explaining what it's like to have dizziness and the frustruatioin involved in obtaining adequate diagnosis and treatment.
2
MIne disappeared with accupuncture. Blessed relief.
5
I had extreme vertigo after a near head on collision. The only thing that helped me was Vestibular Rehab. I don't know if you tried it or not.
4
I too suffered from years of on-again, off-again vertigo, with episodes lasting up to 3 months. I was on my knees trying to find a way to stop the chronic dizziness which affected every area of my life. After 2 brain scans and numerous visits with Neurologists and ENT doctors, I got a diagnosis of Vestibular Migraine but got no effective relief as all pharmacological options suggested had no effect. Then I did some research on Vestibular Migraine and natural supplements. I discovered that high doses of Vitamin B2 (Riboflavin) and Magnesium had been shown to alleviate symptoms. 2 years ago I started a daily regime of 400 mg of Vitamin B2 and 400mg of Magnesium; within a week the vertigo subsided and I have not had a single day of dizziness since! This has truly transformed my life.
28
You shouldn’t have that graphic with this article. I don’t have vertigo and it made me dizzy. Very unthinking.
37
Getting prompt medical treatment can be lifesaving. My ENT immediately sent me for an MRI which revealed several clots in my brain which vascular neurology was able to dissolve and which have not returned. Be certain to have the cause of the dizziness investigated.
10
Honestly, I’m quite shocked the author didn’t mention (or try) “alternative medicine” as an option to help treat his symptoms. Chinese medicine and acupuncture can provide amazing relief to patients suffering from dizziness, vertigo, nausea, etc. I don’t want to judge the authors process and pain, but having a daily dose of multiple anti-depressants can reek havoc in the body in many other ways. I’m sick of the medical world just throwing drugs at problems and compartmentalizing the different parts of our bodies. Often times our symptoms are coming from a whole range of imbalances that need to be treated holistically. Acupuncture doesn’t work for everyone. But we are over prescribed and clearly suffering from it as a culture. It’s time to regularly include options beyond what has come to be accepted as “medicine” when we talk about illness. Our modern medicine has been in existence for about 150 yrs. Eastern medicine, for example, had been used and refined for 2,000 yrs. Lets change the way we approach our bodies and our health.
4
@Patrick Riley I appreciate the note. For months and sometimes years I saw highly recommended practitioners of massage, chiropractics, acupuncture, electroacupuncture, trigger-point dry needling, the Alexander Technique for breathing, herbs and tinctures, craniosacral therapy, essential oils, meditation, diets based on blood tests, diets based on theories about gluten and dairy, and diets based on studies of sugars and fats, and more. None had any effect, so I started taking medication that mitigated the symptoms.
14
I’m curious as to whether you were ever treated for adrenal symptoms. My son has this issue and when treated with glandulars for adrenal fatigue they disappeared forever!
2
Thank you for responding. And I apologize, I wasn’t aware of the other treatments you tried. And I’m sorry they didn’t work for you. Happy you are feeling some relief with your current therapies! Thank you for writing about your experience.
9
It is unfortunate to hear about everyone's suffering and lack of adequate medical care. it is more unfortunate that MDs in an outpatient setting do not directly refer to DPTs (disclosure I am one :) who are specifically trained to perform differential diagnosis with dizziness, and in the case of BPPV, we perform the specific crystal-mobilizing maneuver to relieve symptoms.
We had our annual APTA conference the last 3 days in Denver (18k PTs) and I bet this was one of the few in the medical community this year that had multiple vestibular sessions in addition to one specifically on PPPD.
Our hospital sends a vestibular-trained therapist down to the ED right away for patients with vestibular symptoms; I can only hope the outpatient world will do the same someday.
24
@Amy When my husband was first sick, his MD did recommend maneuvers for BPPV. I found some really helpful videos on You Tube. ( Of course they didn't work on a brain tumor). I relayed all this to his docs and was pretty much ignored. Kudos to your hospital for taking this seriously, I wish ours did the same.
3
@Amy When my husband was first sick, his MD did recommend maneuvers for BPPV. I found some really helpful videos on You Tube. ( Of course they didn't work on a brain tumor). I relayed all this to his docs and was pretty much ignored. Kudos to your hospital for taking this seriously, I wish ours did the same.
@Amy When my husband was first sick, his MD did recommend maneuvers for BPPV. I found some really helpful videos on You Tube. ( Of course they didn't work on a brain tumor). I relayed all this to his docs and was pretty much ignored. Kudos to your hospital for taking this seriously, I wish ours did the same.
My husband began having severe dizzy spells, nausea and vomiting a little over a year ago. His internist diagnosed him with benign positional vertigo and atrial fibrillation and referred him to a cardiologist. The cardiologist only treated the a-fib, of course. When the dizziness persisted and worsened, all we were told was "gee, BPPV doesn't usually last this long". Finally, after 6 months- by which time this had progressed to include an inability to walk because he couldn't keep his balance, and double vision, he was finally referred for an MRI. That's when we found he had several brain tumors. By that time little could be done and he died 4 months later.
We are both RNs and I kept telling his docs that this is more than BPPV but I couldn't get anyone to listen.
I also now have about $20,000 of co-payments to deal with.
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@Malinoismom
I'm so sorry for your experience and loss and the medical copays you are left with as a legacy of the failure of your medical team to thoroughly and properly investigate what was causing his continuing symptoms. You were both RNs. It's frightening that the doctors didn't listen to medically educated patients. What chance do non-medical people have in convincing their care team that their symptoms need thorough investigation?
It took 6 months to get an MRI! With the symptoms and their progression, that's borderline malpractice. I had symptoms where an MRI was indicated. There was no problem with my doctor getting one scheduled and I had one within a couple of weeks. (Thankfully, no issues there).
Our medical system is so broken. If you find a good doctor who listens to your issues and doesn't just dismiss you, hang on to him/her. They're more precious than gold.
15
@Malinoismom
Your story is sad and I am so sorry for your loss. If it happened to me, I'd be calling Morgan and Morgan and Medicare's Claims Investigation unit or whatever it's called. You shouldn't have to bear the financial burden of medical professional neglect....
Also sad, sometimes criminal, is that doctors so frequently do not believe or listen carefully to patients. An old refrain.
8
As I was reading your story I was worried that it was going to involve Neurology. I’m so sorry that you and your husband had to go through this.
7
My husband found that too large a dosage of Tylenol caused dizziness.
8
There is a little-known vision misalignment disorder that can cause the dizziness and other symptoms you've mentioned. Treatment is with micro-prism lenses. It's called vertical heterophoria. Specially trained optometrists can provide this care - there is only a few around the country.
6
I have permanent vestibular neuritis, 30% loss on left side, and was greatly helped by balance retraining by a DPT who specializes in that area. Such specialists are hard to find, and I find I really need to go back. After an acute period where I could not drive at all, I can now drive locally but not in many high speed highway situations. It’s has definitely impacted my life.
9
I'm surprised that no doctor suggested a cardiologist, as mine did after I had brief episodes of dizziness and near-unconsciousness while driving a few months ago. Fortunately, my heart (ears, etc.) is fine, but the symptoms may come from renal insufficiency. (I had to ferret that out on my own.) Drinking more water more often has helped considerably and I can now drive safely again.
10
Three and a half years ago, in an instant, I developed vestibular neuritis. Upshot was that one of my vestibular nerves was 80% destroyed, considered worst case scenario. So my damaged nerve sends 'weak and inconsistent' information to my brain about where my body is in space,. 18 months of vestibular PT (thank you ACA) got me part way back, but my brain never learned to fully compensate, leaving me with constant vertigo whenever I am moving.
Just 6 months ago, my area Kaiser hired an otologist, an ENT who specializes in the inner ear. He introduced me to the concept of migraine activity (activity, not headaches) potentially interfering with my brain's ability to compensate. Under his care, I started with supplements and dietary restrictions, then added a blood pressure drug. No improvement. In early January he suggested I add a tricyclic antidepressant to the rx list, again to see if the chemistry in my brain could be altered in a way that would help my dizziness. After 3 years, I was not optimistic at all, but much to my shock, my vertigo has improved roughly 30 - 50%. A miracle for me! I do not know whether this gain will continue, but I think this avenue the author discusses of working on brain chemistry with a variety of drugs is worth pursuing. A good starting point is Bucholz's of John's Hopkins 'Heal Your Headache'.
I wish all the best to the members of this vertigo club which none of us ever wanted to join. Thanks to Brian for this article.
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@igloopants thanks for that, I’m similar to you with 100% loss and deaf on that side. I’ve tried ssri drugs. 6 years of this is is still very difficult. I’ve been told migraine meds could help but nothing has. Hope you remain on the upside
3
I take 5 prescribed meds and aspirin, all very common, for blood pressure control after long ago cardiac event and surgery.
4 of those meds list "bad dizzyness or passing out" as side effects. Yet when I mention "light-headed sensations" to my docs, there is never any consideration that it may be the effect of something they prescribe every day.
I'm not experiencing anything like the serious effects described by many here--I empathize with the impact that vertigo can have. I'm only suggesting that what's in your pill bottles may contribute. Read the package inserts, and be aware that the effects can be additive.
12
In 2006 I underwent an emergency hysterectomy at age 51. Five weeks afterwards I awoke one morning to the most hideous dizziness that made me scream when I lifted my head from the pillow. I could not walk and could barely talk, it was so disorienting. I was taken to an emergency room, where they admitted me as a “stroke patient,” and then ran MRIs. The neurologist said my brain was fine. After three days I was discharged, still dizzy, with no diagnosis. I was given two prescriptions, Clonazepam and Nortriptlyine. I was told it would take 5-6 weeks for them to have an effect. During that time I was to try and walk a bit each day. I was so nauseous I could barely eat and went from 110 to 90 pounds. I was sent to a vestibular expert, who put me through exercises that made me more dizzy. Still no diagnosis. Finally the meds began to help. Another thing that helped was walking in a swimming pool, where I had no fear of falling and injuring myself.
But this all came back to haunt me several years later when I began to lose my hearing. Now I have one ear with moderate hearing loss, the mother ear with moderate to severe hearing loss. I have been wearing hearing aids for 10 years. I have tinnitus, for which I take ginkgo biloba. When I visited an ENT doctor, he dismissed the entire thing, saying he had patients with worse problems. I am appalled at how little the medical world knows about what goes on in our heads: brain, hearing balance, vision, dementia.
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@Janet Baker I always hesitate to mention my book, as sales is not what I'm after - it's raising awareness. But I do advise you to look at A Hole In My Life (find on Amazon) - only a high resolution CT scan would show holes or thinning of your balance canals, causing SCDS. The books covers all kinds of inner ear disorders, presented within a memoir. I do study Neuroscience etc, so it's all carefully researched! Best wishes.
2
@Philippa Thomson And is there treatment for this?
Thank you.
1
@Janet Baker that sounds like Ménière’s Disease You have the same symptoms as me.
2
I also had symptoms of dizziness and unsteadiness. In addition I had various other symptoms like brain fog, shakes, and a feeling of muscle weakness. It came on gradually shortly after TURP surgery. I went to various doctors who did just about every test in their playbook on me. They did blood tests and various scans. Nothing! So I finally asked myself what had changed in the last few years. Other than getting older the only thing that had changed was my asthma medicine. After my surgery I had started using an albuterol inhaler. I had taken various drugs for asthma for years but never albuterol. So I quit taking the albuterol a couple months ago and my symptoms have all but disappeared. Now I need to find another asthma medicine before spring as that's when my symptoms tend to be worse.
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@Phil Ask your asthma doctor about Xopenex, a rescue medication that works for me. I can't take albuterol because it makes me very agitated.
3
@Phil
I also take Xopenex for my asthma, even though I have to pay extra for it. For me, albuterol causes heart palpitations.
2
Can sympathize. I had one brief completely unexplained episode a few months ago and it was profoundly frightening. Am hoping it is the last such episode.
6
"But dizziness is a problem with the vestibular system"
-dizziness is a non-medical term used by laypersons to describe a huge variety of sensations - it can be caused by almost anything - infection, electrolyte imbalance, dehydration, a myriad of heart problems, carotid stenosis, inner ear problems, brain tumors, hydrocephalus, depression/mental illness, etc. etc. etc.. Vertigo MIGHT be a problem with your vestibular system... or things like a brain tumor or stroke.
"And even the relatively small number of experts who do have appropriate training are often motivated by the insurance system to conduct exams and tests, rather than spending time talking to patients."
- as a physician I'm starting to find articles similar to this increasingly offensive. I'm an emergency physician and know how to accurately differentiate life threatening from non life-threatening vertigo very well. Most of the way I do this is by talking to patients and spending a good deal of time listening to their story and performing a detailed exam. The ENT physician you saw is an expert at ruling out inner ear problems. The ophthalmologist you saw is an expert at ruling out ocular issues as a cause of your 'dizziness'. I do also also find it ironic that you basically chastised physicians for calling your symptoms 'psychiatric' but now you are happily parading around a diagnosis that is essentially a psychiatric/catch all diagnosis.
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Dizziness and vertigo are different symptoms. Vertigo includes a spinning sensation. Dizziness does not.
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@DZ
Perfect response. The devil is in the details! Also, being an EM Physician, one realizes that dizziness is such a vague term that it is important to delve further and obtain the details about what is going on. Feeling “foggy”, feeling off balance, feeling like passing out, seeing black spots, etc are all different sensations that require different evaluative tests, and a lay person make not be able to make that distinction, because of socioeconomic factor or anxiety.
17
@DZ I agree that ER physicians and others can make these differential diagnoses. It is crucial just how your diagnostic knowledge is imparted. If the symptoms are vague and the tests are negative, it doesn't mean that there is absolutely nothing wrong in a physiological sense, even in a functional sense. It is helpful if the MD conveys his/her knowledge in a compassionate and sensitive manner, regardless of diagnosis or lack of one (for the moment). Often, if the problem is not obvious, the fall back response is either: stress, anxiety, aging, hypochondria, health anxiety, etc. All one needs is one "hysterical" (in the psychiatric sense) patient to die after the fact, for the MD to be cured of the rush to judgment. Also, even if anxiety/stress, etc. is ultimately causative for some (but not all) patients, it is important that one's conclusions be conveyed with compassion and even humility (e.g. I don't have all the answers right now). Regardless of what your examination and tests show, the symptoms may be scary and even debilitating for the patient. Kindness and attentiveness means the world to people.
53
Having suffered exposure to petroleum based chemicals I now have little lining of the sinus - and problems which I suspect may well be connected to the Vagus nerve branch in the sinus.
With occurrence of Migraine type visual effects - if I flush the sinuses using a Nettie pot the symptoms usually clear within minutes. The logical source in my estimation is an oversensitive nerve branch of the Vagus nerve, - considering the Vagus nerve information network character.
1
A great article but a terrible image to use on the web for those of us who have these sorts of issues. What were you thinking?
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@Jeffrey Dreiblatt yes I agree
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@Jeffrey Dreiblatt I totally agree. Although I've gotten pretty adept at quickly scrolling through these types of images.
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@Jeffrey Dreiblatt It is horrible. I immediately felt sick.
17
My mother has dealt with the same issue over and over again, She was in a tragic accident back in 2008 where she was stabbed while locking up her job establishment at night that left her with excruciating pain and vertigo. She went to a Neurologist that kept insisting that my mother was just simply overwhelmed with work and stressed with overall life. This physician adamantly had this mindset that it was simply stress. Ultimately my mother kept telling her that she had the tip of the knife encrusted in her head and that was causing nerve misfire causing her not only vertigo, but neck pain and so forth. I still never understood how this physician kept insisting a cause that was completely incorrect. Was it pride ? Was it the lack of knowledge ? Was it that she didn't care much, still completely flabbergasted with her response on my mother's case.
22
@Jennifer
So sorry that your mom suffered this horrible assault and that you both went through an inept medical response. Did you find a more satisfactory provider? I am in the midst of a tough medical situation myself and saw, over the course of two months, two neurologists, a rheumatologist, an endocrinologist, my PCP, went through countless diagnostics and came up with nothing. My PCP, who saw that I was in a bad situation, recommended that I find a neurologist in NYC who also taught medicine. That’s what I did and although I had to pay out of pocket, he did get to the bottom of things.
Best wishes to you and your mother.
12
@g zurbay your view of modern medicine would be comical and insulting to many people in the world who see and experience suffering daily (malaria, for starters) and wish they had access to medical care .
1
@Jennifer You need remember - most doctors are empty vessels filled with the accepted teaching - that allows them to blithely reject an alternate or reasoned examination of related information they have been conditioned to reject.
This is especially the case from the inept GP - who is only capable of functioning as a car mechanic inept at logic and reduced to changing parts until they happen to change one that solves the problem...
When the "DOC" acts like God, refusing any input, - RUN...
10
What I didn’t see here is the curse of an inner ear infection called Miniers disease. This causes severe vertigo along with a series of spasms that can last for hours. They are followed by a day long hangover of general weakness. They can be alleviated with steroid shots to the ear in question. Loss of hearing is a consequence of this disease and is severe as well. ENT’s are very aware of this condition which is largely untreatable.
3
@MP Crugnale
There are a few comments here about Meniere’s, from which my mother has suffered. It is not curable, but can often be managed by keeping sodium, caffeine and alcohol low, while also getting enough sleep regularly.
Best wishes to all who are going through vertigo inducing conditions.
3
@MP Crugnale Please do bear in mind though that Meniere's Disease is very over diagnosed. I wrote an award-winning essay on this subject: https://www.menieres.org.uk/files/pdfs/Thomson.pdf
5
@MP Crugnale My mother had Meniere's disease, with horrible vertigo/nausea, and it was "cured" by two things: a shunt in the inner ear, and cutting both the auditory and balance nerves on the affected (right) side. Unfortunately, one of the problematic side-effects of this surgery is the possibility of Meningitis, which my mother got. This was in 1986, and she was treated by one of the best ent doctors in the nation, using the best treatments he knew at the time. She had balance problems after that, but the Meniere's never returned. I hope others can be spared this surgery, though.
3
I actually took your previous article to my doctor and suggested the diagnosis of vestibular migraine. It turned out to be exactly right. 100mg of Topamax and my symptoms subsided, but unfortunately, the side effects were intolerable so I have bounced in and out of remission since coming off my meds. Prior to the diagnosis of vestibular migraine, I spent over a year with my dizziness and vertigo attributed to anxiety. I'm very grateful for your article 3 years ago!
9
@Sally Happy to have been of some help. Sorry it was limited. Good luck moving forward, Brian
5
I was having dizziness when getting up in the morning and I also noticed a fuzziness in my vision. An MRI revealed that I had a pituitary tumor. Memorial Sloan Kettering Hospital has a pituitary surgery center and I had the tumor removed. The condition is non-cancerous.
Upon waking up, my vision is back to normal and I have not been dizzy since.
11
Dizziness is when you feel like you're spinning. Vertigo is when you feel like the world is spinning around you. I had chronic vertigo for about 15 years, and have no idea why it went away. But it turns out that there are now much better treatments for vertigo than when it began for me. If you've had it long term, it's worth making a fresh attempt to getting it treated.
5
@Blonde Guy If there are much better treatments, my ENT doctors have not heard of them. I wish there were better treatments.
2
I've had PPPD since 1972. Of course it didn't have a name until just recently, was unrecognized and written off as psychological, as many new medical ailments are initially. Even now it is only a "syndrome" which means that the symptoms can be grouped and recognized but that doesn't mean it's understood. Even more than the dizziness, cognitive issue have been the most troublesome and life-influencing for me. I view it as a neurotransmission problem with different parts of the visual/balance/orientation axis miscommunicating. When I die I hope someone will examine my brain to try to gain insight into this strange and disabling disorder.
9
I had symptoms very much like you describe.
I ended up having a pituitary tumor. Once the tumor was removed my vision went back to normal and an no longer dizzy.
2
I thought the most common cause of dizziness is BPPV: Ear crystals that your body uses to sense movement get dislodged from your ear canal and start sending signals to your nerves that are interepreted by your brain that you are in moving when you're not. Doctors are hopeless at treating this as apparently only PTs are taught the Epley method for repositioning the crystals becuase it doesn't involve you being given unnecessary drugs. It took me three weeks and a head MRI to find a PT to treat me and I was cured in one Eppley session. It is appalling that physicians are not taught this easy to do procedure It is appalling that many geriatric patients are needlessly drugged whe complaining about dizzyness from BPPV.
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@Dee I have spent the last several decades trying to get emergency physicians and others to learn this technique. There is progress being made, but it's slow. The younger generation is starting to get it. There is a saying "Science advances one funeral at a time." Hopefully all doctors will be able to perform this simple maneuver before my funeral comes.
11
Cawthorne Exercises have also worked well for me and you can do them on your own.
1
U ended on 2 psychiatric medications that alleviate stress. Sounds like a mental health disorder was correct.
3
@CV Antidepressants are used to treat pain. That doesn't mean pain is a mental health disorder.
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@CV Benzodiazepines dull the vestibular system which is why Valium is routinely given to vertigo patients.
3
Only experience so far is occasional from standing up too fast, usually from reclining - rarely severe, but can be. It's enough to convince that persistence would be a serious problem, and a stunner if it isn't taken seriously by the doctors.
1
@J111111 That type of dizziness is usually due to a sudden drop in blood pressure. It's very common in adults who take anti-hypertension medications, but it can happen to anyone. The advice that I used to give my patients who had this problem, when I was still working as a professional nurse, was simple. Don't stand up or change positions quickly. Hope your occasional episodes never become worse.
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I find this highly entertaining. The author rejects the diagnosis of depression and anxiety and feels that non-specialists brushed him off. He doesn't feel appropriately diagnosed until someone names it PPPD. This is considered a functional neurological disorder! Aka what neurologists call a psychiatric manifestation of disease- aka depression/anxiety with a slightly different term. It is treated with guess what? anxiety and depression meds. Seems the first docs he saw were right.
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@X Let me guess, you're a shrink?
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@X How you can find someone's suffering to be entertaining is beyond me. Have some empathy.
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@X It is hurtful to hear ignorant comments like this. I suffer from Meniere's disease and vestibular migraines. Xanex helps calms the nerves and vestibular system so I dont have to go to the ER every time I get vertigo, but other meds are trial and error. Blood pressure meds, water pills (primarily diagnosed to people with kidney disease), seizure medications are all used to try to control the vertigo in addition to antidepressants. Many of us dont have improvement from antidepressants, just some of us do. Some of us dont improve with any of those meds and we endure invasive proceedures with great risk potential. Many of us end up with PTSD and do suffer anxiety and depression. My psychiatrist and therapist(started going after diagnosed with MD and VM) have never told me my vertigo is psychological. I live in a city where I have access to good ENTs and neurologists who understand my condition and try to help me manage it. I've heard from many it took them years to get diagnosed properly and any kind of treatment that may help them. That is the point of this article: there are unsympathetic people out there (like you) and some of them are doctors. The author didnt search for a different diagnosis he was searching for real help to manage a debilitating condition. The tone of your comment and your words are so offensive. It sounds like you're making fun of a chronically ill person. I hope you are a better person in other areas of your life.
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I'm sorry I missed your first essay. Lately I've been experiencing very frightening dizzy spells. I worry that I will fall and seriously hurt myself. I sent a note to my MDs office to ask about an appointment and was told to drink more water. I mean...that's it. So I'm in the shower and about to plunge over the edge but at least I'm hydrated. Thank you for all the info here..
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@jackzfun
Sorry you got such an inadequate response. Maybe an ENT provider would be more thorough. Good luck and be well.
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Consistent hydration cured my serious, on-going problem, so don’t dismiss that advice. It may take a few days. Your doctor is wise to rule out dehydration before treating you with potentially harmful medications.
Great article but please keep in mind that your image is triggering for a lot of people with vestibular disorders (and would likely love to read your work.)
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@Someone No kidding! I had to scroll quickly past that.
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Please see a physical therapist who specializes in vestibular disorders. The feeling of dizziness comes from an imbalance between right and left vestibular input and among different sensory systems. Patients always want a diagnosis but sometimes there really isn’t one. However that doesn’t mean that there isn’t help to reduce symptoms. Physical therapists will show you exercises to accommodate and integrate input. Good luck
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I had dizziness. There were days when it was so bad that I had to hold onto furniture to get across a room. The brain fog made some computer related tasks impossible. It turns out that I had incredibly low B12. Regular injections of B12 have helped enormously but the B12.
It also turned out that my iron levels were low. My iron levels were at 7 and the Dr was still insisting that I deal with it through a diet high in iron. Finally my gastroenterologist (yes, I have absorbption issues) noticed my iron levels and immediately ordered 3 batches of Iron transfusions.
Low blood pressure and stomach issues have made this more complicated to treat.
Make sure you insist on a lot of testing, see another doctor if the first doctor doesn't help you find a solution.
Vote for a candidate who will insure the kind of health care that will support you through this process. I live in a country where everything I needed was covered. I am lucky and grateful.
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@Jwalnut You ARE lucky, - too bad jerks like Trumpski have not had physical issues that would wake them to the plight of others, so that EVERYONE had health care...
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@Jwalnut
I also had iron deficiency. For years I took ferrous sulfate which was not well absorbed by my body (GI upset for starters). Finally a nurse practioner prescribed a pill that consists of B12 + Vitamic C + ferrous fumerate which was better absorbed by my body and finally cured my iron deficiency.
It would be interesting to compare and contrast how doctors in countries with a national health system would view/handle cases of dizziness. During my time in Germany, I found that doctors treat an individual holistically and work with you to find the answer, even if the tests don't corroborate your symptoms. In the UK, however, I believe dizziness would not be seen as a threat to your health, and would be ignored by most GP Surgeries (not worth using public funds). I think looking at how countries that view productivity decline as an issue, like Germany, handle dizziness might provide some insight for ways to treat it.
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@Andrew You can easily compare between UK and USA by reading the book 'A Hole In My Life : Battling Chronic Dizziness' (Philippa Thomson) The book was very thoroughly researched, and authenticated by two ear and balance specialists.
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@Andrew I dont know what Japan's healthcare system is, but they also have an amazingly comprehensive holistic approach to Meniere's. Here in the US I see a neurologist, ENT and my primary care doc (plus 5 other specialists who deal with side effects of the meds, psych, and all of the other things that have gone wrong with my body since vertigo started. It's been over a year and I dont feel close to my previous self. They never communicate with each other except for med changes. I have to get my records to bring to appts to show test results, diagnosis, treatment plans, ect. American healthcare is broken!
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@Andrew One has to wonder how many are in nursing homes as of the result of problems that should be fixed without a miracle.
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Thank you for pointing out that vestibular disorders create a sense of being unsafe. I just did a presentation in which I suggested using sensory processing treatments to address trauma-induced mental health issues.
When you feel unsteady and unbalanced, you have more than a movement problem, you feel unsafe. When you feel unsafe in the world because of trauma, you can use your balance system to help you feel safer and more in control.
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I have hereditary dizziness. Runs in my moms family.
It first struck about 12 years ago.
But a glitch came in 2018.
I have a Meningioma wrapped around and interfering with my 6 th cranial nerve and it caused paralysis of my lateral rectus muscle. Hence double vision and reason for my long term dizziness. A Neuro ophthalmologist repeated tests done a year before in a hospital. Then the docs said I had a stroke. Misdiagnosed. My eye doc saved me a lot of aggravation.
Since the tumor was expressed with double vision I haven’t had a dizzy spell. Mine felt like I was on a “tilt a whirl” ride up to 3 to 4 weeks duration.
I now see the neurosurgeon and neuro optometrist and Neuro ophthalmology ,too ,every year for an MRI and prescription prism glasses.
So be keen on getting checked head to toe if dizzy a lot. Insist on a contrast MRI or PET scan.
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Thank you for bringing to light why some of us suffer in isolation. I have vestibular migraine and PPPD. After a visit with a neuro-optometrist, I was also diagnosed with ocular motor dysfunction where my peripheral and central vision don't work together. We don't know why I got this way, but one of my doctor's suggested my problems stem from post concussion syndrome. I can't handle complex visual stimuli and environments. I have to limit use of screens (phone, computer, TV). I don't drive or go to the movies. And, I limit my time in stores and restaurants. Instead of Xanax, I take Ativan. I would like to add dimension to this dialogue - THE BRAIN FATIGUE is crazy!!!. If I'm not drowsy because of meds, I'm always tired because my brain shuts down as it tries to overcompensate for lacking neuroplasticity.
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@Camille The ocular aspect was not sufficiently addressed. That on top of ear issues needs consideration.
In addition to looking for the cause of dizziness, consider vestibular physical therapy to help manage the distressing and debilitating symptoms
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@AJB Yes. This is absolutely right. Thanks for adding.
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Severe vertigo is dreadful in so many ways — the fear of an unknown cause, when will it end, how can I provide for my family. I had a great Neurologist that found mine was caused by BPPV, hypotension, and low sodium. I did lose consciousness once and ended up having 14 staples in my scalp to close the wound. But after taking Gabapentin for four months, making sure I eat enough salt, stay hydrated, and do my exercises, I feel much better.
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Thank you Brian for writing about this debilitating condition. It's so important for sufferers to get the right kind of treatment right away, before the subsequent manifestations of panic lead to agoraphobia, a serious condition that can destroy one's social and professional life. I was fortunate, though after endless visits to specialists, to end up at NYU's Vestibular Rehab Center, wo put me on the road to recovery. This was thanks to Dr. Devinsky (head of NYU's Comprehensive Epilepsy Center, and who writes for NYT) who put me in touch with them. There is hope, and I wish the best for any sufferers reading this article.
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This is practically my story exactly! So happy to see this article in the NY Times! I look forward to reading the book!
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@Pam Thank you! I very much look forward to hearing what you think of the novel, too.
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@Pam Thanks so much for reading and responding! Looking forward to your thoughts on the novel.
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Dizziness causes anxiety. Anxiety doesn’t cause dizziness. I explain it to people this way: Imagine that sensation you get when you trip and are about to fall. That panicky feeling when your adrenaline rushes and your heart rate increases. Now imagine feeling that way constantly.
Dizziness forces our brains in overdrive — trying to make sense of where we are. Always being in fight or flight mode leaves us feeling exhausted and anxious.
Thank you for this article, Brian Platzer. My hope is that more providers treat the root cause, not the symptom.
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@Meleah dizziness can and often is a symptom of anxiety and/or chronic stress (over taxed nervous system). Chronic dizziness is often caused by the fear associated with the dizziness and an anxiety pattern/loop is caused. So yes, anxiety and stress can be exclusively the reason for the dizziness.
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@tally I believe that the point of Mr. Platzer’s article is to shine a light on people WITH VESTIBULAR DISORDERS being dismissed by healthcare providers who are often poorly trained in these conditions. And yes, being misdiagnosed and undiagnosed certainly will compound anxiety.
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@Meleah 100% People say “Oh, you have anxiety.” I say, “you would too if if felt like you were stepping off a 10 story building, the ground was dropping away from underneath you, etc.”
Similar to you, I’ve describe it as the feeling you get when you step off the curb without seeing it or when you miss a step on the stairs- that brief moment of panic and terror except it’s with every step.
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Had a dizziness problem a couple of years ago. Went to emergency. Found nothing. Made the rounds of all the specialists. Found nothing. A month or so later, it went away.
Back in Dec, began experiencing the same problem again. Periodic mild dizziness/lightheadedness, even while sitting. Feels a bit like motion sickness. Didn't waste my time going to the MD's again.
What do MD's spend so many years studying before they can even get their license? So many just waste your time and aren't any help at all!
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@Joseph “Dizziness” isn’t the only problem that physicians have to study in medical school or in their residencies.
@Joseph I would urge you to read my story in 'A Hole in My Life. Battling Chronic Dizziness' (on Amazon) I think it would help to see all the possible reasons for your dizziness, and also the many different experiences I had with doctors to get my diagnosis. It's an easy read but very carefully researched.
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@WBS This is true, but in my 35 years as an emergency physician and teacher of vertigo for the past 20 years, it is one of the most poorly understood and taught subjects in all of medicine.
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Thanks for this article. Glad you got to the root of your dizziness. In my case, it's an acoustic neuroma (vestibular schwannoma), benign tumor, that impacts my balance and is the cause of my dizziness. You identify a number of things we all should follow. Find a great doctor to diagnose (it can take some time and energy). Become informed -- read all you can. Ask questions. You know yourself best -- be in tune with your own body. Keep a positive attitude. Take your meds. Follow-through with PT. Seek support -- professional/family/friends. Repeat. Repeat again.
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This is incredibly helpful.
A retired physician friend suggested that my dizziness might be related to migraines. This seemed plausible to me, and I raised the possibility with my ear specialist doctor, but he dismissed it as nonsense.
This doctor never talked to me about my symptoms, he just looked at his test results and was impatient of anything I would say. I really felt unheard.
The link you posted to vestibular migraines is incredibly exciting to me. I don't know if this is what I have, but it gives me more tools for pursuing a diagnosis.
Thank you!!
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@WW You need a "dizziness" specialist doctor - they can come from ENT, neurology, etc. - but not that guy. Vestibular Migraine has been around for quite a while. Not knowing that seems like malpractice per se.
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I also had decades of undiagnosed dizziness- in various forms. Sudden vertigo attacks, endless episodes of seemingly BPPV, or simple dizziness and nausea for days/weeks at a time. Finally a smart neuro diagnosed vestibular migraines. I could not believe that it took 35 years to arrive at such a simple diagnosis. I now control these migraines completely through diet and lifestyle- I used the information and protocol described in the book “Fighting the migraine epidemic “ by Angela Stanton. I totally recommend the book and the diet- I. It only prevents migraines from happening, but should one come anyway, I know how to turn it around using just food, water and salt.
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@WW I would strongly recommend getting in touch with Dr Gerard Gianoli at the Ear & Balance Institute in Covington, LA. Even if it's just to email to get an opinion.
I live in Scotland, but I travelled to him for treatment, and he is streets ahead of all the many other ENT doctors I saw in the UK. A real ear and balance specialist with years of experience.
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I have been diagnosed with Meniere's disease which flares up and then goes away for months. It has symptoms of vertigo and nausea which can completely debilitate you. I have preventive medications which include a diuretic and another rather expensive drug as well as sleeping pills and anti nausea medications. It is a frightening experience when I have attacks which can occur when I am driving or otherwise engaged . I have to pull over and call for help as I would lose my license if I ever were caught driving under this condition. I believe it was caused by a bad fall I had about five years ago but the neurologist and ear nose and throat specialist says it can just occur in anyone. I am supposed to avoid alcohol, chocolate, caffeine, stress. The Epley maneuver doesn't work for me but it is supposed to be an inner ear problem. The MRI also didn't find anything.
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@Barbara Greene
Meniere's has had me several times in my life, but cleared up, completely, usually within a month, and the worst of it extended for no more than a week, I think it may have been related to some infections and or allergic reactions. When it hits -- and it can as you noted come on unexpectedly - you cannot get your bearings, cannot walk, forget about driving.
I am very suspicious about being told it's from stress. It generates stress, however. I do not believe chocolate or caffeine was a factor, but obviously, alcohol use can affect balance - and probably susceptibility to infection.
I'd be wary of using sleeping bills because of their "side effects" which can amplify fogginess and affect balance.
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@Barbara Greene and cheryl,
I am so sorry that you both have suffered with Meniere’s. My mom has it, too, and for some time before the diagnosis she found it was wrecking her life. She had been prescribed Meclizine (Antivert), which left her bedridden and zombie like for a day after taking a pill. Finally, she found an ENT Doctor who diagnosed her and suggested proactive steps to avoid the spells, like reducing salt and cutting out caffeine, which helped. The provider also prescribed something helpful but milder than the Antivert, should she feel dizzy. The hearing loss my mother experienced from Meniere’s isn’t reversible, unfortunately, but she has her life back.
I wish you both well. Take care.
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As a fellow sufferer of many years, with much the same story Mr. Platzer describes, one of the best treatments I found (which worked on and off, admittedly) was called the Epley Maneuver :
Check the Johns Hopkins medical website for details.
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@leslie devries
I get occasional bouts of BPPV, and self treat. The best demonstration of the Epley Maneuver I have found is:
https://www.youtube.com/watch?v=9SLm76jQg3g
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So, “it’s not depression or anxiety but it responds to antidepressants/anxiolyitics!” Makes sense...
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@Robert Frustrating, but correct. These antidepressants/anxiolyitics are blunt instruments that treat far more disorders than their name suggests.
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@Robert I sense a level of disdain in your comment (I could be mistaken) as if "this is all just anxiety and depression -- get over it." Anxiolitic and anti-depressant medications work for some and not all and have very complex effects on the brain chemistry. By dampening the signals in the brain the dizziness for some is reduced which may or may not having anything to do with underlying anxiety. Unless you've spent a ton of time looking at this issue (and I know I and many others similarly affected have), you'd be well advised to tread carefully.
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@Andy Well-explained. Thank you.
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If anyone has follow-up questions or personal comments, feel free to reach out to me through twitter or email (address on my website).
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It may not be a comfort to you but any symptom that can’t be diagnosed via a test is usually dismissed as “stress.”
I had exactly one incidence of vertigo (30+ years ago) and can say with certainty that the inability to keep your head off the floor is a debilitating problem. I did not fully understand vertigo before that incident, maybe doctors, while educated, remain ignorant for lack of first hand experience.
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@SW : +1000. Unless you've had it, you can't really relate to it. I had a bout of vertigo last year that was so bad that I could only crawl (not walk) to the bathroom to throw up. The fear that it would never go away was almost as debilitating as the vertigo itself. Fortunately, mine did go away after a few weeks. Also fortunately, I had a pre-existing relationship with a neurologist who did not dismiss my symptoms as a psychological problem. She referred me to a physical therapist who specilizes in vestibular disorders. Prior to that, I didn't know such practitioners existed. Now, because I have a pre-existing relationship with the PT guy, I can go straight there next time I have an episode and skip the doctor altogether.
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Virtual reality glasses could help doctors and others ‘understand.’
Also, why are they allowed to bill you for not doing anything? (Seems like reinforcing lazy/bad behavior.) Frankly, other than checking blood pressure, pulse & oxygen levels (which a nurse or assistant actually does) then checking my lungs & thyroid (which the doctor does), I could just call the visit in. The doctor spends almost all the visit at the computer, documenting.
If you have a problem & they pass it off without even trying to figure it out, doing research, etc., do they even deserve their fee?
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I have a neighbor in her 80"s who recently developed this condition . She went to excellent hospitals where doctors but frequently mentioned said "you are old so what can you expect!".
Also if you substituted undiagnosed illness for dizziness in your article you'd find that it matches perfectly. when doctor's are unable to diagnosis an illness and there are few signs(something doctor can see) then the experience you have had is exactly the same as anyone suffering from an illness not found with testing.
Doctor's in general seem to unable to accept that not everything shows up on a test . They prefer to push the person to believe they have psychological problems especially women. I wish they could learn to say "we just don't know " .
When doctos dump the illness back n the patient by saying it is psychological they add misery and do harm. When they said this to my neighbor she wisely responded that it would be wonderful if it were psychological because that would be treatable.
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@Chelsea
The reason PPPD doesn’t show up on tests is because it’s a functional disorder. That’s a nice way of saying it’s psychiatric disorder. Which is why it responds to medications for anxiety and depression,
like other pseudo-medical disorders that are psychiatric in origin (fibromyalgia, IBS, etc.).
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@LYN
Anxiety and depression are biochemical disorders, as are fibromyalgia and IBS. We are our biology, it’s really that simple and that complex.
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I could not have written it better. This mirrors everything that I have experienced. Six doctors, MRIs, CAT scans, etc. and no cures. The doctors keep fiddling with my meds which leads to a recurrence of problems that the meds were prescribed for. I have gone to balance specialists and that was worthless. Most MDs think they have the answer but, in the end, there is no answer.
This is like a dog chasing its tail. WEe just have to deal with it as best as we can.
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@Charlie So happy the article resonated with your experiences. I know how lonely this stuff can be.
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Could it be vestibular migraines? By definition if tests don’t show anything migraine has to be considered... I would read a book about migraines to see if all the symptoms fit the picture. I found that I occasionally had even aura with mine, but the doctors had been incapable of explaining what aura looks like and I said I don’t have that... 35 years - since being a teenager- without a diagnosis! Only last year got properly diagnosed and I now control all my symptoms with diet.
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It's coming up on year two after being diagnosed with vestibular neuritis(VN). I still struggle with feeling dizzy or brain foggy. When walking I feel like in another world. The brain will re-compensate over time but not entirely in my case. Not yet anyway. I have met people who have been going through this for ten years. I just live with it now. Some days are good. Others, so so. I have found that alcohol is a trigger as is strenuous exercise. Recently, I have experimented with stopping my statin meds. Not much difference. The inner ear is a most misunderstood organ. A lot of my friends suffer from tinnitus along with dizzy feelings. I suggest learning how to follow some simple exercises that can help alleviate some of these symptoms.
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As a fellow sufferer, Brian, I appreciate your willingness to bring this to light and make your article so personal. As you know, there are good days and bad days -- the "up and down" that is all-too-closely aligned with this syndrome/illness/malady (never sure what to call it).
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@Andy I so appreciate this note. As you know, we live in a very frustrating world of ambiguities.
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I look forward to reading your book Brian and thank you for writing about it from a personal perspective and including a character in your book living with it.
@Andy Syndrome/illness/malady says it perfectly. I have been dealing with this for over 8 years, but I am fortunate in that I can manage my day to day activities, with some lifestyle changes. I am part of an online community living with the vestibular issues. What I have learned for sure is that it is a shape shifting, sneaky, cruel and nasty disorder. While many doctors need to better understand it I have found help from vestibular physio. Also this website by VeDA https://vestibular.org/
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@Valerie Parr Thanks so much. I very much look forward to hearing your thoughts.
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One of my very good friends suffers from this exact condition -- it's so wonderful and refreshing to see it discussed in the open. Thank you, Brian, for writing this piece.
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@David Paul Mr. Paul, Thank you for responding all the way from Germany. I'm wishing the best for your friend and hope my article can help a little.
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