Harriet Tubman, a true American hero, lived with epilepsy. While she was still enslaved, Harriet Tubman survived a particularly brutal beating that left her with a traumatic brain injury and seizures which she endured for the rest of her life. I believe Harriet Tubman well understood what you wrote so well, Elizabeth, that "every living thing wants most of all to live". She successfully shared that gift of life and freedom with countless enslaved Americans through her leadership on the Underground Railroad. All the while Harriet Tubman lived with epilepsy. That's something to think on.
40
I could write a book about living with epilepsy. Like being unable to work, unable to get disability, and ending up homeless for a couple of years in Seattle winter rains.
Or multiple suicide attempts because of the god-awful meds that did nothing for the seizures but the doctors kept telling me to take them anyway.
Or how it took me 4 years to even get a doctor to believe me in the first place when I said something was terribly wrong. I was told to go see a psychiatrist because my labs showed I was in great health. Fortunately, my old roommate took video of me one day during the second seizure event involving EMTs coming to the house. Doctors looked at the video, did a quick EEG, and told me to go see a shrink...who told me I needed to be on anti-convulsants because he had seen the EEG. ??
I was having grand-mals at least once every 7 days during my sleep. It got to the point that if it was day 8 and no seizure, I was afraid to go to bed knowing that I would injure myself flopping around on a hardwood floor. In addition, I was having partial-complex seizures which I can best describe as sleep-walking. The body is moving and talking to people but you are not there. Afraid that I would have another of those and wander around the city in my underwear, I went to bed for a full year wearing construction boots, a hoody, coat, and hat just in case.
As bad as all of this sounds, I remind myself that I could have diabetes. Now THOSE folks are sick!
23
The main thing I've learned from having epilepsy is how the science of medicine isn't as cut and dried as many people like to think it is.
I appreciate the list of tips for helping someone who's having a seizure that's linked to at the end of this essay. It's alarming to me how many people think it's a good idea to stick something in a seizing person's mouth, so (s)he won't swallow his/her tongue. That's a dangerous misconception! It could cause someone to break a tooth, or even choke to death.
6
Sleep is *so* important for anyone with epilepsy. Your brain needs the recovery time.
I'm writing this as a person with epilepsy.
If you have mild epilepsy, and can't bear to treat it with medication, treat getting eight hours of sleep per night like a top priority. You'll have fewer seizures, and you'll be more able to be fully present in your interactions with your loved ones. Spreading yourself too thin isn't good for your brain.
If you keep a steady sleep schedule, your family and friends will adjust their expectations of when you will be available to them. They won't feel deprived, as long as they understand that your health comes first.
And your health should come first.
Best wishes to you! Thanks for putting yourself out there like this.
9
Thank you for this article.
I had seizures for the first 30 years of my life. At 30 I was able to I had surgery which ended my siezures but I will never that time in
my life, how devastating the seizures were and how they completely upended my life. It seems to be true tbat people are not able to enjoy those little things in life that are big things to people who don't have their health.
6
Epilepsy comes in many forms. There is a large group of people who, like me, have one seizure and that's it. I got no explanation of the cause, despite tests and scans and many EEGs. Among epileptics, I am one of the lucky ones. Even so, the event - a grand mal - had consequences. By NY law, I could not drive for a year (seriously inconvenient). I took meds that caused a drowsy mind fog for over 10 years. It was like being artificially stupid.
I needed my neurologist to sign a form every year so I could legally drive. He refused to "allow" me to go off the meds. In retrospect I believe he was afraid of being sued if he approved my stopping the meds and if I then had a seizure while driving and hurt or killed someone. He would cite mysterious squiggles in the EEG and re-up the prescription. Eventually, after NY state mercifully released me from the obligation to submit the annual form, and after a couple of years of the doctor's denials of my requests to go off the pills, I decided to do it on my own. I tapered the dose down very slowly over about 3 months. And stopped.
20 years later, despite articulate people writing pieces like this one, I have no idea of what it would be like to have "active" epilepsy - the limits it places on you, the hard decisions, accommodations, injuries and humiliations. But I do know a little about the stigma and the efforts one makes to keep the condition secret, if one can. And I thank my lucky stars, which are no longer occluded by mind fog.
5
You should not have been branded an epileptic/a person with epilepsy after only one seizure and (I assume) no evidence of brain damage, seems to me.
Best wishes to you.
6
Thank you for this. My son, 25 years old, suddenly passed away on 1/1/2020 due to complications from a seizure. We lost an incredible young man.
He too was on medication, which impaired his sleep, which in turn led to seizures, embarrassment and depression. And so the circle went.
Notwithstanding these daily obstacles, he picked himself up and attacked life with gusto. The final two entries in his journal, said it all: "ALWAYS show live to everyone in family. Never know when they're going to go." And, finally, "The world really is a wonderful place. Always remember that."
I love you my son.
25
My deepest condolences on the loss of your son.
14
@brian gallik
Family support makes a world of difference in the quality of anyone's life - and is especially true for anyone with a serious affliction such as epilepsy.
6
Elizabeth, I had severe temporal lobe epilepsy, with grand mal seizures, due to a skull fracture from a bicycle accident. I was able to heal it using the techniques and guidance of the Epilepsy Research center in Napa County, California. My healing, without drugs, involved being hooked up to a biofeedback machine, while relaxing on a comfy chaise lounge. I learned how to go into a state of very deep relaxation, which calms the metabolism down, so that seizures cannot happen. I still do this deep relaxation 'exercise' at least once a day, without the need for the biofeedback machine, and it totally stops any potential seizures. It's been many years since one happened. No drugs & normal life~ a Huge Healing Success!!
8
Ms Breunig -
In my opinion, you should look for a more open-minded neurologist, and speaking as a retired epilepsy specialist, may I say preferably an epilepsy specialist. I like to think that when I was practicing, I would try to work with my patients until we could find an epilepsy drug that they could at least tolerate, if not actually gain some beneficial side effects from.
Perhaps this is is the old notion of Erlich’s “magic bullet” made individual, that there is a perfect drug for every patient with this condition, and of course it is never quite perfect, but that shouldn’t stop us from searching. Yes, changing epilepsy medications is onerous but I think it is better to try changing multiple times than to live with intolerable side effects or the risks of untreated epilepsy.
It was brave of you to reveal your diagnosis in general - depending on specifics your risk could be higher or lower, but most forms of epilepsy have risks ranging from inconvenience and embarrassment to significantly elevated risk of premature death, including the well described issue of “SUDEP”, or sudden unexpected death in epilepsy.
Not sure where you live, but this may be part of of the schism between the practice of medicine on the West Coast, where it ideally is more individualized and empathetic, vs the East Coast where it seemed to me more paternalistic and rigid. Full disclosure, my early medical training on the East Coast was over a generation ago, but I fear little has changed.
20
I have epilepsy, and this seems like excellent advice.
7
My hat's off to you. My seizures are controlled without side-effects and I foolishly take it for granted that it's the same for all. It's good to be schooled.
6
It's a pleasure to see yet another writer, who has Epilepsy, display the courage to speak about it.
I say so because Epilepsy is something many with the condition, myself included, can be unwilling to be open about given how misunderstood this neurological condition is.
As a result, without realizing it, we can easily surrender ourselves and our value because we put the opinion of others, who may be clueless about this neurological condition, ahead of ourselves. And clearly that is something that hinder us from taking on certain endeavors, endeavors we are quite capable to succeeding at.
To you, Elizabeth, and yet another great writer by the name of Kurt Eichenwald, we salute you for your courage to be willing to say to others; "I have Epilepsy. But Epilepsy doesn't define me."
It's a principle I have put to work from the time I was diagnosed at the age of four because I was lucky to have family members who were in medicine (my mom and grandmother were both RNs and my grandfather was a pharmacist).
As a result, none of them allowed Epilepsy to define me. Yes, seizures can be annoying. But Epilepsy is just a fraction of me.
To my fellow readers, might I suggest Kurt Eichenwald's book titled "A Mind Unraveled: A True Story of Disease, Love, and Triumph."
Kurt's story about the challenges he faced because of Epilepsy will help you to put things in perspective.
Last, the term "Epilepic," according to neurology, is used to define the seizures; not the person.
7
@Nigel
Should be "Epileptic" in my last sentence.
1
Having had epilepsy since I was 18 I realize I always have to be aware of it. I still take one of the older medications, which had significant problems if it wasn't in range (toxic if to high, ineffective if too low). I tried modern medications and those alone didn't work, so I am two medications which have been effective. Changing epilepsy drugs is brutal depending on the medication and of course risky. I was on one medication and lived overseas, came home with the same dose, and started having back to back seizures. The frustrating thing is while I am grateful drugs exist I still consider the "science" of epilepsy to be dartboard science. There are no answers really other than trying lots of stuff and seeing what works and what doesn't. Seizures are also scary, as depending on the type, you can easily be alive one moment and not the next, or have massive gaps in time. It has given me perspective however as mankind continues to advance in many ways epilepsy is a reminder that we aren't all that long out of the caves. I appreciate the way that epilepsy is viewed in the US and many developed countries. When I lived overseas the name for it translated to "crazy pig" and I actually got more injuries from people trying to help me rather than just protect my head and let it ride itself out!
7
In the 1970's, I had my first grand mal seizures. I had one in a New York subway car between stations, at an admissions test for higher education, and in office settings. It's a devastating experience, as consciousness fades during the aura preceding a seizure, as you come to with no recollection of your name or address, and the physical pain from the enormous exertion by every muscle in your body that makes it stiffen and convulse.
I'm puzzled, though, by your experience with seizure meds, which have come a long way since the 1970s. I take a cocktail of meds that have controlled my seizures for many years, but have not left me with the symptoms you describe, particularly severe headaches.
I salute your determination and grit. Thank you for your personal descriptions of the burden of this condition. I wish you health and good luck.
34
Both my children....are waiting for self driving cars.
7
"Ketogenic Therapies and brain surgery are the only known cures for Epilepsy. Half of the people with epilepsy who try the diet have a seizure reduction of at least 50%. Up to 25% become completely seizure free."
- From the Charlie Foundation
https://charliefoundation.org/keto-for-epilepsy/
Seems to cure just about everything else, too, not just epilepsy - anything neurodegenerative (Alzheimers, Parkinsons) or metabolic (cancer, diabetes, or heart related).
Easy weight loss too.
Absolutely correct that plants want to protect themselves. That onion was producing sulfuric acid in your eyes. Plants are 5% toxic by weight. Best to not eat them because their biochemical defenses make the old bioweapons products from Fort Detrick look like childs' play.
(In fact 99.99% of the toxins we eat are natural plant toxins, not the man-made pesticides we also get (only 0.01%))
2
Cue the antivax mom’s to chime in. I have epilepsy and it sucks. I understand maybe they mean well but for those of us with intractable seizures that leave our bodies aching and our vision as blurred as our thoughts; stop telling us to try this diet or that root!
You don’t go up to a person in a wheelchair and say, if you just tried standing up once in awhile then you might have a better chance of walking. I’m glad the author has a mild case and doesn’t need medicine to live but that means the author has a MILD CASE.
21
Thank you for writing about your epilepsy so openly. I too have lived with epilepsy all my life and others in my family have epilepsy. While there are many challenges, I'd like to stress and strongly encourage people with epilepsy not to give up on finding the right treatment. Or if complete seizure control without side effects isn't found, to keep striving for the best you can get.
Seizure have as many if not more risks than seizure medicines. Many people don't talk about it - but there is a real risk of dying suddenly from epilepsy. This is called SUDEP and happens in 1 out of 1,000 people. It happens most often in people with uncontrolled seizures, thus the importance of understanding risks and not giving up hope.
Each person needs to learn about their own risks and make informed decisions about their epilepsy care and life. Part of being informed is seeing an epilepsy specialist to learn your risks and what treatments may be available. (www.naec-epilepsy.org)
As a woman with epilepsy, mom, and epilepsy nurse I urge people to seek information and help. And continue to share your experiences and spread awareness about epilepsy to all. Visit the Epilepsy Foundation at www.epilepsy.com for info and support.
17
@Patty Osborne Shafer - I have spent the last decade seeing pretty much every neurologist in town and have been to every ER at least once. And until today, I have never heard of SUDEP. No doctor has ever mentioned Ketogenic diets or anything of the kind.
But saying someone has epilepsy is like saying someone has cancer. There are many, many reasons for the seizures and what works for one probably won't work for the next.
3
Thank you for sharing. I often don't agree with you, and I'm not a religious person, as you are, but I do think you're a genuine and generous person, and your friends and family are lucky to know you.
5
I have had partial seizures since I was 7. As an adult, I fought hard to be on as little medication as possible mostly because of what these drugs do to diminish cognitive capacities: i.e. memory and attention span. I, too, risked a few seizures but can't imagine life having much meaning for me if Im unable to read, converse, have a career that I enjoy, or travel because I'm incapacitated by meds. By keeping the dose and sugar consumption low, I have been able to pursue a master's degree and an intellectually stimulating career. But I also know that some with epilepsy aren't so lucky and must be on high doses of multiple meds with little success at seizure control.
6
As here, people with epilepsy often report that medication side-effects reduce quality of life more than do seizures. Nonetheless, having uncontrolled tonic clonic seizures is dangerous and there are quite a few newer anti-seizure treatment with fewer side-effects than the older drugs used to treat Juvenile myoclonic epilepsy of Janz. Zonisamide, for example, is often well tolerated; brivaracetam often avoids emotional symptoms associated with levetiracetam (Keppra). "Go slow and low" with dosing. Very few people have to resort to tolerating major seizures due to medication side-effects.
8
Beautiful column. BTW, the keto diet is an effective treatment for some forms of epilepsy: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet
5
Can we please use the correct language? “Grand mal”=Big bad. The appropriate term is tonic colonic.The disorder already has more than enough stigma.
5
Having two sons with seizure disorders, I never consider either an epileptic. At nine months, Ryan had his first febrile seizure which morphed into atypical & dangerous febrile seizure during a series of childhood illnesses. He was prescribed phenobarbital and died at 13 mos. of toxic epidermal necrolysis (an adverse drug reaction). It could have been caused by an antibiotic or even Advil, but most believe because of the severity of the reaction - his death was caused by the anti-seizure med. His younger brother, Harrison had his first seizure at 15 mos. and was prescribed a diet, The Low Glycemic Index treatment, at Mass General. He is seven years seizure free. It is so important to share our stories. All people with seizure disorders need safer, better treatments. I understand the tough choices made by parents and individuals in finding the right treatment. Let's keep talking and working together to cure Epilepsy. And, let's love all equally with all our heart on St. Valentine's Day.
14
@Epilepsy Mom
Correct mom. The term "Epileptic" refers to the seizures, not the person with Epilepsy. Glad you don't use it to define your sons.
Also, it's great to hear you refer to Mass Gen. My neurosurgeon was from Mass Gen.
And, as you can see in the ratings my US News and World Report, Mass Gen. is high on the list of "neurology and neurosurgery."
6
I developed a particularly intrusive form of Epilepsy in my mid 30's after I suffered a head injury during my time in the military. It was an eye opening and very humbling experience for me. The one thing that became quickly clear is that the human brain is one thing that doctor's truly don't understand. They have theories, and tool's that give them clue's about what's happening inside, but it's all educated guesses.
I shared your difficulties with the various medications that were prescribed to me. While a few of them did reduce the frequency of my seizures, the side effects were overwhelming. Some of them made me constantly exhausted, some made me angry and strained my personal relationships. None of them removed the overwhelming fear that I might lose control of my body at any time.
In time I came to realize that controlling my seizures would require a fundamental reorganization of my life. I continued to try different medications until I found some that had manageable side effects, but beyond that I also had to cut out the elements of my life that caused me stress.
I chose a career that doesn't force me in to high pressure situations, even though they were where I had thrived in the past and continue to crave. I found a partner that understands my condition, allows me to express the anxiety my condition causes me, and makes me feel safe.
I used to be embarrassed by my condition, now it's something I'm proud to have overcome. It's been 3 months since my last seizure.
16
I have been taking medicines to help me avoid seizures for 55 of 62 years. I get nervous when I can see the pills running out because I have mismanaged my fill-ups several times and found myself in a hospital. In Maryland, if you mismanage your meds they will provide you with an emergency supply enough to get a prescription from your doctor. However, I had to extend a stay booth in Florida and New York where they do not provide the same service and things went south on me. The fear of losing my driving privileges as has happened to me before. Oh, how I wish I could use diet to manage this and not have to be on them for the remainder of my life.
10
My daughter developed epilepsy when she was 9 years old. At the first appointment at Children's National Medical Center in Washington DC the docs insisted she attend Brainy Camps, run by the hospital for children with epilepsy. It was a transformative experience for my daughter and my family. We watched kids with epilepsy swim, ride horses, and be normal.
Any parent of a child with epilepsy, look into Brainy Camps - kids come from all over the world to experience meeting other children like them - and also to be seen as the kid who.... rather than the one kid in school who has epilepsy.
5
@Barb - What a great idea especially for parents to find out they are not alone in their daily battles. The overwhelming majority of what I have learned about living from epilepsy, I learned from other epileptics vs. my neurologists who have never even spent a year taking Depakote.
2
@Barb Brainy Camps is a terrific program! The Epilepsy Foundation's nationwide network is involved in camps like this all over the U.S. https://www.epilepsy.com/living-epilepsy/our-programs/camps
3
Thank you for helping to raise awareness about epilepsy. Our beautiful son had a latent form of epilepsy with very few seizures in his teen years. He too declined medication because of the side effects and figured his seizures were infrequent enough to put him at significant risk. Unfortunately he guessed wrong and died during the night in our home from SUDEP (Sudden Unexpected Death in Epilepsy, about which the NY Times published a great article in 2016) which kills 2000-3000 people in the US each year, at the tender age of 22. Despite the horrible pain of the loss of our wonderful son, we respect his decision as only he knew how much he hated the side effects. Like many young people he probably figured he was invincible, but epilepsy of course does its own thing.
Wishing you the very best and I applaud you for the courage to move ahead as you see best, and for helping to raise awareness.
16
I really appreciated the column. Thank you for combining your experience with a history lesson. Great job.
3
I'm a little surprised that your Neurologist couldn't find a single, solitary medication that you are able to tolerate - there are dozens of options! In any event, choosing not to use a medication is your prerogative of course. The main fear is increased risk of SUDEP (sudden death in epilepsy), a poorly understood phenomenon that is associated with medication noncompliance, among other things.
10
@GBR There are some of us with epilepsy who can't tolerate seizure meds. I'm one of the people who is allergic to almost every available med that is appropriate for my type of epilepsy. As a child, I took phenobarbital. As an adult, I've taken meds that have made me so ill, that I could barely leave the house. I now take a medication that isn't really that effective at protecting me, but it's better than nothing. Not a great solution, but I'm working with what's out there. The word "noncompliance" is harsh, I think and a bit judgmental. Sometimes there's nothing that works.
6
@Nan
By “non-compliance” I simply meant shorthand for “deciding not to comply with the recommendation to take a seizure medication.“ No judgement intended; I firmly believe that each person is the ultimate arbiter of their own body!!
11
I'm 73, and like many of my peers I've had my share of issues (hip replacement, two rotator cuff surgeries, prostate cancer, etc.), but I am still riding my bike regularly (3,410 miles last year) and am in overall good health. ... Which is to say ... I am always moved by stories like Ms. Bruenig's, moved by her clarity and courage, her willingness to engage her illness on her own terms. Life promises is very little, so we all must react to its difficulties as best we can. Ms. Bruenig's example is a good one.
4
My sister, brother and grandson have all had seizures. My sister died from SUDEP. Thank you for an excellent article. We all live with health issues and hardships at various times in our lives. But we all want to live our lives to the fullest even when hardships exist. Your article inspired me and reminded me once again that all we have is time and the greatest gift is the choice in our we spend it.
5
Thank you, Ms. Bruenig for writing with courage and honestly about the challenge of living with a disability.
2
Untreated epilepsy is associated with a significant increased risk of death.
Status epilepticus, common among people with epilepsy, is a life-threatening emergency, and can cause brain injury and death.
Referring to people as "epileptics" has long been considered inappropriate, derogatory, and even bigoted. The societal treatment of people with epilepsy is better than in the past, although I agree that we have a long way to go. Ms. Bruenig's use of the term "epileptic" instead of "people with epilepsy" doesn't help and is a step backward. Where are the editors?
While it is interesting to consider the value of time, as so articulately penned by Ms. Bruenig, it is worth noting that not treating epilepsy is very dangerous, and causes an increase in risk of death. Getting plenty of sleep is good, but does not reduce the risk of death to the point that not taking medication is a safe approach for almost all people with epilepsy.
Seizures associated with untreated epilepsy can, and do, kill people - not an entertaining or artful statement, but a fact that Ms. Bruenig omits. People in the US with epilepsy whose seizures do not respond to medication without side effects should seek consultation at a comprehensive epilepsy center.
18
It's pieces like this that tell us we need more young writers in the opinion sections of newspapers. Well written, different perspective from the politics-driven columns by everyone else, exuding compassion.
7
My 40 year old son died during an epileptic seizure. He refused to take medication. I have since read much about SUDEP Sudden Unexpected Death from Epilepsy. There is a current effort to inform people that seizures can cause death.
7
I had a Golden Retriever who first displayed grand mal epileptic seizures at 3 years. Treatments with phenobarbitol turned him into a zombie. Finally we found a vet who found use of Potassium Bromide in conjunction with monthly blood samples and testing by Oregon State University to be an effective treatment. He was more subdued the rest of his life. No seizures. Eventually the dog died of cancer at 10.
I have a lot of sympathy for people who have epilepsy. It's a pretty horrid experience calming a 60 lb dog. I hate to think what it would be like for a person.
3
@News User - "I hate to think what it would be like for a person."
Picture this. Three very large men are pinning you down while a fourth shouts, "relax, you're having a seizure" while he tries to start a second IV.
2
@tom harrison It must be terrifying. My beau used to try to hold me down or hug me when I was having a seizure, which was just exactly what I didn't want. He was acting with the best of intentions, but it only layered more fear over the embarrassment and discomfort. Now I had to worry about accidentally kicking someone who wouldn't get out of the way? I cannot imagine how horrible it must be to have Grand Mal seizures, let alone be held down while having one!
1
@Sarah - In the majority of cases, I just regain consciousness about 2-3 hours after the event and everyone tells me what happens. No aura or warning, just waking up in a hospital (or on the floor at home) with a bunch of pulled muscles, a bit tongue, wet pants, followed by 12 hours of intense hurling in the bathroom. About 48 hours later, I feel okay again except for the bit tongue.
Sounds terrible but my heart goes out to folks with cancer or diabetes. One of my dearest friends died of diabetes this past fall. The woman was so sick she couldn't even turn over in bed or leave the house unless family took her somewhere. I would have hung myself at least a year ago if I were as sick as she was.
3
I've had epilepsy (complex partial seizures) since grade school, and finally underwent brain surgery in 1999. Since then, I have gone without seizures. I must take anticonvulsant medication, but it is a good tradeoff as I am now able to work, perform my doctorate dissertation and lead a productive life. More people die from epilepsy each year than from breast cancer, a fact that is not widely known. If you have epilepsy or know someone who does, do not despair, the therapies and medications are constantly improving. Peace, Charles.
8
Thanks for this. When I was in first grade in St. Louis, Missouri, my best friend was epileptic. I still have vivid memories of him writhing on the floor, mouth foaming. I felt helpless to help him, except to get his parents, and full of desire to do so. We've lost touch (it's almost fifty years on now) but I also have just as vivid memories of walking home with him. We were perhaps both the odd kids out, since I was the only white kid in our class. Elizabeth Bruenig is a talent, period, but all the more given her perseverance in the face of this condition.
3
@Onward and Upward
Being a child who regularly suffers from public grand mal seizures comes with its own unique, additional set of challenges.
4
@Astrid Thanks for saying this. I went through it in elementary school. It colored my whole experience of being a kid, and was extremely alienating. A very painful time in my life.
2
@Nan
I hear you, and you are welcome;)
For those of us whose lives have not (yet) been touched by any form of epilepsy, this is a most valuable, informative piece. If a day comes when the previously uninformed are called unexpectedly, to access this information we will have the basics to act more helpfully. This information should be recirculated often in public spaces
2
In my early-mid 70's I suffered three seizures. Each one progressively worse. Barely passing out to my wife having to call an ambulance. In all three cases short hospital stays. My internist first prescribed Tegretol, worked just fine. After that under the care of a well respected neurologist I was switched to Lamictal. No side effects that I am aware of and so far no more seizures. The good Doctor did make me give up my motorcycle, having been driving one for 60 years. On and off mild depression which to some effect has been a fact of my life but certainly not increasingly so. Happy to be in one piece and grateful to my "Neuro" keeping an eye on me and monitor my blood Lamictal level every six months. (Still no more bikes...)
8
As a sociology grad student in 1982, a PhD scholar came to interview for a professorship. S/he wrote an open letter that they had EP and what to do about it. I wasn't on campus that day, but still think they were so brave to share. As a result I was much more comfortable with a friend who had seizures. Thank you Liz and all the commentators.
3
Ms. Bruenig, thank you for sharing this lovely essay with the readers of The Times.
Please know that your comments on various medications are on point. As difficult to believe what I am about to write, it is critically important that lay readers take it to heart.
Medications are usually dosed in micrograms (one millionth of a gram) and milligrams (one thousandth of a gram). This is due to these tiny quantities being defined as therapeutic doses.
Since there are 454 grams in one pound, it needs to be understood that being prescribed doses at levels in excess of the therapeutic dose is akin to being poisoned.
We also need to be aware that taking a given medication as prescribed can induce recovery from the primary condition, but that the given medication as prescribed can induce secondary conditions -- requiring additional medications.
It is for the reason articulated in the previous paragraph that all MDs and pharmacists should check to ensure that what is being prescribed truly helps and doesn't make matters worse.
4
I started having grand mal seizures when I was 11 years old. Today is my 76th birthday. I fell down a flight of stairs and fractured my skull when I was 16. It tuned out to be a fortuitous event.It brought me under the care of a tough ,Jewish neurosurgeon for NYC. He and his family had barely escaped the holocaust. By example, he kinda taught me how tough life could really be for some of us. He was outspoken about my need to overcome my fears and go forward in life. No doctor I'd encountered before had ever said something like this to me. I had concluded that I was going to live my live as a kind of invalid after listening to them. From that point on I did what I wanted to do(except drive).I would fall down in the middle of a city and was always helped by concerned bystanders.
I married, had children and started a successful business.It helps to be self-employed. I took different medications and finally found one the worked pretty well. My seizures stopped in my late 40's and I have been seizure free ever since. Like you,my seizures were related to interrupted sleep cycle. I also found that I had a severe Vitamin B12 deficiency which may have contributed to the problem.
My main concern is that the "kindness of strangers" seems to have disappeared in this country. A person I recently witnessed having a seizure was handcuffed to a gurney by 5 police officers and carted off to jail. They were clearly afraid of him. I'm not sure how well I would have done in todays world.
27
What a great column!
4
Every day my 45yr old son walks a mile to Versailles, a Cuban restaurant nearby for his daily “cafecito.” He walks alone even though he has refractory seizures which he has suffered from since infancy. He has been on multiple meds and multiple combinations but still seizes almost on a weekly basis - except when walking to the restaurant. He has been seen by drs all over the world and in fact is under the care of another Dr Kanner, psychiatrist/neurologist Dr Andres Kanner. He is my strongest child, never flinching from getting up after a paralyzing seizure and going to work, albeit wobbly but determined. Genetic testing - testing that is so important today - has pinpointed the mutated gene & variant (SCN8A) although research has yet to come up with the right medication. But it will one day. In the meantime Eric will be walking to that place where he is known affectionately as “Chico” or “cuz” and where the coffee is always hot.
Patrícia Figueroa Sowers, mom
79
@Patricia Figueroa Sowers
Individuals like your son are some of the most courageous people on this planet.
11
Thank you so much to the author for sharing your story.
I've had a seizure disorder since I was in my 20's (am now over 70).
And I think I have been fortunate compared to many people with seizure disorders. I have grand mal seizures, that always happen during sleep. After a couple of very unpleasant experiences with the first medications that were tried, my doctor found the perfect medication for me - it controls my seizures completely, on a low dose, and with no side effects. At this point, having been seizure-free for several decades, it really doesn't limit my life in any way. But I'm always aware that my quality of life is totally dependent on the medication and that if it stopped working for me, things would change very quickly.
I wish all people with seizure disorders could find a medication that works as well for them as this one has for me. And there are a lot of meds available these days, so even if the first few don't work or have bad side effects, the next one might be just what you need.
6
@Oliver James - That sounds great about the meds but try convincing a neurologist that the medication you are taking makes you suidicidal and does nothing for the frequency or severity of the seizures. In every case I was told to just keep taking them. Three suicide attempts and a couple of years being homeless later, an old doctor at the VA decided to try something old school which has bascially stopped the seizures but I constantly feel like I'm on meth. And I'm one of those crazy guys on the bus who starts singing, "I'm singing in the rain, I'm singing in the rain" on a Seattle bus.
2
I feel fortunate. After two TBI’s, I have partial complex seizures, and they are largely controlled without too many side effects. But I can empathize with the sense of being alone, of being a pawn, a plaything, maybe, of some lonely synapses searching for their long gone neighbors. I really have no idea what triggers them, I do know that the auras wrap me in a warm sense of deja vu, of being slightly out of place, maybe looking at the work from a different dimension that can only be accessed from a brain occupied in an electrical storm.
But I can empathize with the aloneness, the Otherness, that those TBI’s from long ago bequeathed me in the form of epilepsy.
Thank you for writing this.
3
Thank you for sharing your story and bringing to light a condition not enough people talk about, considering the amount of those who suffer. My girlfriend included.
3
Thank you for writing this.
2
Thanks for the enlightening article Elizabeth. I wonder if you worry about SUDEP (Sudden Unexpected Death in Epilepsy)?
I think a second article on SUDEP would be valuable to many.
5
@Jacquie - I have had very severe epilepsy for quite some time now and until today, I have never heard of SUDEP. Not one single neurologist has ever mentioned the word.
Many people with varying types of epilepsy/ seizure activity posting here after this interesting article.
TRY medical marijuana! It has helped a relative of mine so much. He does not need to take any other form of medication.
Please look into it with an open mind! There are now oils, pills, capsules and other forms of medical cannabis, that is, its not "pass the joint"!!
Medical cannabis is regulated by each state and the access is controlled by physicians trained in it's use. How much one can access is also designated by the physician.
1
@RLiss - I was growing top shelf medical (even created my own strains) when my epilepsy was its worst.
For epilepsy, one has no need for medical marijuana since the item needed is CBD which one can get online from legal hemp. Finding a good source is another issue. Just because it says CBD on the label means little.
Our state pretty much drove all of the medical dispensaries out of business once legal took over here in Washington. The only reason now that a doctor writes a medical letter is so one can grow more plants than the non-medical residents. Otherwise, you just hit the cannabis store next to the coffee shop and head on your way.
1
Thank you very much for writing this piece. I have juvenile myoclonic epilepsy, and have had seizures on and off since I was a child. I have struggled with whether or not to medicate, because I am a scientist and I desire full possession of my faculties with minimal fogginess; on the other hand, I have simply had too many injuries from falling from inconvenient places while having seizures. And I was tired of waking up inside of ambulances having strangers ask me who the president was.
The dilemma is real. I too search for meaning, only to think “I have it because the universe is random and I drew a bad hand on this occasion.”
149
@Russell Yeah, waking up in ambulances with the president question is very annoying. All their questions are annoying. Also, ambulances cost a lot of money. Been there, done that. I decided to take the meds.
27
I’ll always remember the first seizure of our daughter who has Down syndrome. It was February, 2017 and when the EMS person asked who the president was she growled disdainfully: “Trump”.
94
@Laura
Bless her heart:)
7
Thank you for this best of Valentine's cards...
2
Simply wonderful.
1
My epilepsy came in the form of a brain tumor in the early seventies. Three brain surgeries and chronic daily medication since, adapting to a life without driving in Los Angeles and constant adherence to strict sleep requirements which makes John a dull boy are now not the treatment rather my life which is now just a symptom of the disease. Granted some of the post-dictal psychosis was memorable but the kind I wish I could forget. Epilepsy, Yuck!
3
It is indeed a miserable affliction. I know a young lady with a particularly aggressive form in which she has seizures hourly. It’s a horrible condition. Thx for sharing.
2
As someone who developed epilepsy due to a complication from Cat Scratch Disease (it is not just a song), I wish this piece talked about the impact of seizures on family and friends. While they can be equipped to manage it, it takes its toll. I was unwilling to go on medication because I was worried about the side-effects. However, the injuries I suffered over 3 years, the above-mentioned impact on my loved ones, and a fantastic doctor at UCSF who said "if you were my sister, I'd tell you to go on medication," convinced me that the lowest dosage of Lamictal was the way to go. My memory has suffered tremendously and that breaks my heart, but I have seizures maybe once a year and that is when I'm exhausted, have low blood sugar, or my hormones are fluctuating. I appreciate the author's journey and decision not to take medication, but I do hope people consider the consequences before throwing their medication in the bin. If your doctor is prickly and dismissive, find a better doctor (there are plenty of incredible progressive ones out there). My doctor does tons of research and is up on all the alternative approaches to help make things better on medication. Do your own research on all the ways to manage epilepsy from exercise (my doctor said HIIT 3 days a week for help with the memory), diet, acupuncture, CBD, meditation, etc. You can manage with minimal medication and other approaches.
5
I have epilepsy. I have an excellent doctor who has worked with me carefully on medications. What hasn't been mentioned here is that seizures are not just an experience. They cause brain damage. Uncontrolled seizures can, and often do, cause intellectual decline which can be devastating in children and noticeable in adults. I have seen adults very damaged due to seizures. The writer is entitled to live her life as she wishes but the sense that she has made peace with continuing to have seizures, as though they were an inconvenience, belies the danger. However she feels about having seizures and how she describes making choices like not getting enough sleep because she enjoys socializing she seems not to know about, or if she does, she is not informing her readers about, the danger of reduced intellectual functioning caused by short seizures or the sudden and catastrophic loss of brain function, and even death, from a seizure that lasts just a little too long.
Leaving this illness untreated is not a lifestyle choice. It is dangerous. I wish her the best but her opinion piece here has left out the most important consequence of leaving epilepsy untreated. Weighing these consequences is an important part of a discussion of treating or not treating this disease.
22
In 1981 I was in a car crash, sustained a brain injury (TBI,) and had several grand-mal seizures. I was comatose and in traction for four weeks immediately following the incident, so my memories of this time are very foggy and distorted. (Please note, people: many comatose people are aware of your presence when you visit them, and you should try to engage them any way you can.)
Apparently from the time of my first seizure, I was put on a heavy prophylactic dose of Dilantin™ (to which I'm highly allergic,) then phenobarbital, then when I requested to be switched about six months later, Tegretol™ [carbamazepine], which depressed my CNS so severely, I became suicidal. After a couple of suicide attempts by OD in the early 80s, I decided I'd take the chance of having a seizure if it meant I could live my life. (To this day my EEGs show abnormalities, since there's irrevocable scarring in my brain.)
Happily, I've been seizure-free ever since, and in hindsight, some have said my seizures may have been a result of brain edema—or swelling.
7
This is a lovely article. Thanks Elizabeth.
It reminds me that most everyone has their challenges, whether they be for periods of time, or chronic. We don't know what other people have experienced when we encounter them, which is probably another argument in favor of trying to judge others as little as possible, absent any evidence of ill will.
Thankfully at this time I do not have a chronic illness, but a two month sinus infection that lingered this winter definitely reminded me that health is never guaranteed, day to day, or hour by hour, and in some sense all time is borrowed. Or at least not guaranteed. Since recovering I've been finding myself feeling much more grateful for small things. General gratitude for days when I simply wake up feeling good, even if the day ahead is challenging in other ways. Life can be incredibly hard, but maybe a lot less hard when you see all things you already have, even though all is temporary.
3
My partial onset seizures are totally controlled by the anticonvulsant I take twice daily. My most recent seizure was in 2008. I My neurologist is the the leading epilepsy subspecialist in Philadelphia. My dosage has been reduced twice and I have made real progress after dozens of seizures caused by residual scar tissue from a ruptured brain aneurysm on my right PCom artery that left me hospitalized for 228 days in 2005.
I am not an epileptic, but the leading epilepsy subspecialists are there to treat and counsel. Look for the best doctor and you may find as I have the best possible outcome.
6
My concern besides the outrageous cost of medication is people that suffer from multiple diseases. Epileptics that are also autistic, have major depression, etc. I only suffer from major depression and cannot imagine other illnesses on top of that.
The national government should be doing the research for new treatments, not profit driven industry.
4
@Paulie
A lot of people lead very tragic lives. The world needs more compassion.
3
Thank you.
I have two forms of epilepsy. One makes me twitch; the other makes me wet the bed.
Annoying, but not life-altering. If I get enough sleep, the twitch is barely noticeable. A diaper takes care of the bedwetting.
Like Ms Bruening, I stopped taking drugs. Sleeping in a diaper is better – for me and certainly for my wife! – than gthe side effects (principally irritability) of the drugs. The drugs don't completely eliminate the twitch or the bedwetting. If I have to wear a diaper anyway, why suffer the side effects of the drugs?
I wouldn't recommend that for someone (like my nieces) with more severe forms of epilepsy. Her (formerly) daily grand mal seizures are almost completely controlled by modern drugs.
The most striking thing has been the change in medical professionals' attitudes. In the 1960s and 1970s, doctors were horrified that I would choose to wear a diaper rather than take drugs (which were particularly horrible back then). The younger generation of neurologists are not only understanding, but supportive.
Modern disposable adult diapers are a tremendous improvement (in comfort and convenience) over the cloth diapers, safety pins and plastic pants of my teen and college years.
4
A friend of my son's has epilepsy. Through middle and high school, she was a like a daughter, frequently at the house. I didn't know she had seizures until her senior year when her drinking became pronounced and difficult to hide, a trigger for her seizures. She resists medication because of the side effects mentioned, and only intermittently goes to AA, so she relapses into drinking. She doesn't hold a job long and her parents have largely disowned her for the drinking and lying that followed. As she approaches 30 and we see her less often, I worry.
7
Thank you for this piece. One of my parents has lived with epilepsy for decades. I was taught at an early age how to handle seizures. I strongly advise everyone to read the first aid advice that accompanies this article. Seizures can look very frightening but there are a lot of myths about how to handle seizure first aid and not knowing what to do can make the situation worse.
6
This is a dangerously irresponsible article. As a neurologist I have many patients on antiepileptic medications who have no side effects, are able to drive and live happy seizure free lives. Not that side effects cannot happen (they do), but knowing that seizures can rarely cause sudden death and are responsible for great suffering, it seems highly irresponsible to promote the viewpoint of an individual who may encourage others to discontinue life saving medical regimens.
35
@XLER Yes there may very well be medications for epilepsy which have no side effects. However, I have been the victim of DILANTIN, which can (and in my case, did) result in peripheral neuropathy. What particularly galls me is that the neurologist who diagnosed the very beginnings of peripheral neuropathy told me that there was "nothing to worry about". Perhaps if I had switched medications at that point, it may not have progressed. At this point, however, it progresses inexorably. I no longer walk, I dodder, and it is only a matter of time before I will no longer be able to even dodder. I blame not only the makers of Dilantin, but also the several neurologists who never suggested an alternative. I finally was able to switch to another medication ---- and this was only at my own request ---- but it's too late for me.
7
@XLER As a patient who has been on meds for many years, I agree with the good doctor. The meds, which have changed once in approx 40 years, are more than tolerable and a very small price to pay. I drive and continue to live a very full life, working, watching the grandkids...and perhaps most important insofar as this article is concerned, not labeling my self. I really detest "epileptic", it is not what or who I am.
The toughest part is the fear and ignorance that most continue, even in 2020, to associate with the illness. I look fine, act fine, interact with my peers, friends and family well. I don't want to know, however, what they would say if I was open about my condition.
Credit to the author for a long and honest column about it. I'm not sure, however, how much good she has done for herself, much less the community.
4
@XLER I disagree. The writer mentions that she has tried many different treatment strategies, with none that offered her any improvement, due to side effects she found as debilitating as the seizures by themselves. She mentions that certain treatments are successful for certain patients and certain types of disorders and syndromes. She writes that she does not recommend anyone follow her course of non-intervention if they have an alternate treatment.
I do not think anyone who has a "life saving" medical treatment for their own epilepsy would be tempted to discontinue a satisfactory treatment in favor of what sounds like a miserable situation: being unable to respond or tolerant the existing options for treatment. I think, if anything, it will prompt people do a cost-benefit analysis of their treatments, side effects, and quality of life. Something anyone taking any medication should do periodically in consult with their own medical providers.
5
Elizabeth, I appreciate your honesty and openness to something so personal. My hope is it encourages all of us to be brave and speak about our journeys without shame.
All of us have our story - mine started when I was 16. I hid it from my parents and friends until it was rather obvious with the full blown seizure my very first night of college. Loved hearing from my very first boyfriend, 'did you hear about the ambulance that was called for the girl who had a FIT'. I felt such shame.
We don't talk about idiopathic epilepsy that starts in puberty with girls. I had no one to tell me I'd be alright, I would have a family and live a normal life.
Triggers are such a part of figuring out how to manage seizure organically. 40 years later, I think I have down. Alcohol use (tell that to a college freshmen), SLEEP, stress and medication (I also had a love/hate reaction to the Tegretol and Dilatin so I would not take until I had a big episode; Lamictal has been a life saver). HORMONES are another trigger. Menopause has been a challenge.
There needs to be away to reach out to the young women (and men) who are diagnosed in their teens and let them know- it will be just fine.
I forwarded your article to all my friends, so they understand why I am such a buzz kill. I love my time away with them, but after a couple nights, I just need to get some sleep.
So thank you. You gave me a voice that I have never been brave enough to use.
10
i am 75 and suffer from partial complex seizures. A mild form of seizure compared to what some others suffer from. It is as if a plug is pulled and my brain goes blank for about 10 or 15 minutes and i have no memory of my "seizure time". My memory has been seriously compromised in general. I have been through a few drugs with the usual debilitating side effects. Mostly serious fatigue and an almost zombie like awareness. 15 months ago my neurologist gave me a script for Briviact .... a new drug that has allowed me to live seizure free for 16 months with greatly reduced side effects. Apparently this drug was developed to reduce/eliminate seizures with greatly reduced side effects. My only side effect seems to be a need for more sleep. I take 2 naps per day. It is an expensive drug @ $1000 @ month but it's maker, UCB, has a program to supply their drug at zero cost to people who qualify as having low incomes. Every 3 months a supply is Fed Exed to me at no charge. This is a fairly new drug with good effectiveness and lower side effects and i post this to inform seizure prone people who may not have heard of it.
7
Most people have no idea about epilepsy, even these days. I was telling someone about my brother's epilepsy, and mentioned that he had auras before hand that he ignored. The person I was speaking to got a funny look on her face. I realized she thought I meant the psychic kind of auras, not the pre-seizure sensations I meant.
4
@Cyclopsina, one of the insidious things about epilepsy is that there’s no outward physically appearance so no one around is aware that you have a disability and one’s life gets consumed with trying to covering it up because it’s easier than trying to explain something to people around you that they can’t understand without actually experiencing themselves. Often I felt the seizures weren’t my problem it was the people in my world around me.
6
@Cyclopsina - I would be happy just to get the EMTs on board with understanding epilepsy.
One day, a roommate called 911 during one of my seizure events. The EMTs showed up and the first thing they wanted to do was test by blood sugar by jabbing my finger. My roommate told them vociferously that I had epilepsy, not diabetes. I was even wearing my medical alert bracelet/necklace at the time but no one bothered to check to see if I was wearing one. After that, I threw away the medical alert jewelry.
3
A great thought piece that I appreciate Elizabeth. I had an AVM that bled when I was 27, and the surgery to tie off the bleeders combined with the bleeding itself resulted in seizures that came at random over the past 42 years. Loss of control was and is the worst part. I have had good control with a carbamazepine throughout the period. The last loss of consciousness was over 6 years ago, but it hasn't gone away and probably never will. It has evolved. Now I have headaches with or without aura two to three times a month, like this morning. Good control doesn't mean control. Positive outlook is the best medicine.
7
I had an AVM too, I just describe it as a non-cancerous brain tumor as that makes it easier for people to understand. I keep noticing others sensitivity to being called an Epileptic. I guess because mine came on later in life, I didn’t have to grow up with such a stigma I am not as sensitive about it. I have seizures, even with surgery it is a part of my life. I really don’t care what anyone calls me, I feel like all of us that deal with this are amazing survivors. But I do understand we all deal with things differently, and there can be discrimination and alienation.
Most notably, I’m discouraged at the mean, judgey attitude of many commenters. This writer had the guts to bring this up. If more of us talked about it, maybe it wouldn’t be such a dirty word. I too have taken meds that felt worse than the affliction, so I understand the frustration. You are put on meds—and having breakthroughs can be heartbreaking let downs. It’s an emotional journey as well. If at this point in her life she wants to forgo meds—-that is her choice. I choose to take meds with varying degrees of control, and even birth control to try to tame this, an still struggle. Such an open honest attitude is much better than others shaming opinions. Hopefully for all of us, we can find a way to live our lives in peace and stability. I wish strength and understanding to us all
3
Thank you for writing about this intimate and intense malady. I developed seizures in my late 20’s, and they were Partial Complex caused by a non-cancerous tumor that was successfully removed by surgery, but the seizures remained. I never knew there were different types of seizures, and mine felt like religious experiences, deja vous, and intense significant moments of emotion. I’ve heard that it is thought that Joan of Arc May have had this, although I don’t know if that is true. Mine eventually grew to full blown Tonic-Colonic seizure, and after struggles with many different medicines, I too do not drive.
I’ve often wondered about the wonderful, capable people that were pushed away into mental hospitals in the past. I know how isolating it can feel, and how others can discriminate out of fear. I hope that the kids growing up today dealing with this will have more natural treatments available, more love and more hope than ever before. There is nothing “wrong” with you if you are brave enough to deal with this, and society and medicine as a whole can move to compassion and understanding. Not just for seizure, but for all chronic health conditions. Thank you for your honesty and bravery.
6
Thanks for your beautiful article. We lost our 28 year old daughter to SUDEP two years ago, so, as some have noted in the comments, the risk of death from a seizure is real and not uncommon among people with epilepsy. At least 95% of SUDEP cases occur when the individual is alone during a seizure (as our daughter was) or asleep. It is certainly your choice to forego medication, but for those considering that route, please take into account the SUDEP risk.
32
@Roni I am so sorry for your loss.
4
My brother was diagnosed with epilepsy when he was in the 8th grade. He has tried a variety of medications, the side effects of which ranged from drowsiness and foggy thoughts to severe depression and suicidal ideation. For a few years, his epilepsy was incredibly well-controlled - he was able to get his driver's license, be a varsity athlete throughout high school, and live, on the surface, a relatively normal life. After high school, he stopped his meds and started having grand mal seizures again - no one knew that he had stopped, nor did we know of the suffering and pain he had endured while on those medications.
His epilepsy has contributed significantly to his ever-worsening anixety and depression and destroyed his will to live. He is now 23 and waiting for death. He feels so alone. He uses drugs and alcohol to numb his pain. Every day my family and i live in fear, waiting for the call that he has died in his sleep from a seizure, overdosed, or committed suicide. Every day we hope that he will seek help. Reading this piece gave me hope.
Thank you, Elizabeth, for reminding us that there is a light in the dark.
10
I'm just getting started reading this article and I am already very annoyed.
I have epilepsy. People with epilepsy are NOT to be referred to as "epileptics." That is a very outdated and inappropriate term.
Do we call people with cancer "cancers?" Are people with the coronavirus "coronaviruses?" No, of course not.
People who have cancer. People who have the coronavirus. People who have epilepsy. We are not defined by our medical conditions.
A seizure can be epileptic (a lot of them aren't). A person is not.
20
Hi, I’m an epileptic. I have no problem with this ‘label.’ Because it’s absurd to have a problem with the label. Because it gives the label power to have a problem with the label.
Other labels I identify with: professional (not person with a job), son (not person with parents), athlete (not athletic person), many more. Why are you offended by the label?
18
@Nadia
...diabetics, hypertensives, migraneurs ?
4
@ Jack All labels that define a person by their medical challenge reduce that person to that challenge. I'm not an epileptic. I'm someone with epilepsy. Please remember that not all that long ago people with seizures were treated like witches. When I was in graduate school and doing interviews in nursing homes I met a woman with epilepsy who had been institutionalized for 20 years even though she routinely read sophisticated writing, and knew more than her "caretakers."
5
I have it as well. The first step in dealing with mine was acceptance.
I refused to accept it at first. Took my medicine sporadically. Having grand mal seizures and falling out at work. I finally was forced to reckon with it when I had a seizure while driving, had a car accident, totaled my car, fortunately no one else was involved but I broke both legs and an arm.
I vaguely remember the EMS team trying to extract me from the car saying they would have to cut me out. Then I was gone again until I woke up, on my back in the hospital with the nurse screaming in my face "do you know where you are? I didn't. No idea how long I was out.
Many surgeries, flat on my back in a rehab center for 3 months, then 5 days a week physical therapy and learning to walk again. I recovered fully and returned to work.
Next for me was learning to deal with stress. That's what causes mine. After trying different combos of medicine I found something that worked. Different meds. one in the morning, one at night. I haven't had a daytime seizure in years. At night we had to get the right dosage but I now have them under control at night as well.
I'm not drowsy. It takes time for your body to adjust to the meds. I live alone; travel, still drive, usually up at 6 am, have a full day.
Everybody's situation is different but Find a neurologist that is willing to listen to you and work with you. I changed doctors until I did.
.
23
As an individual with epilepsy myself, and a long-time researcher and drug developer for epilepsy as well, I have to say that it is somewhat imprudent from the NYT to publish a piece about dealing with epilepsy without pharmacological therapy. I'm happy for the author that she can deal with the seizures, but there is an incremental risk of SUDEP (sudden unexpected death in epilepsy) in all of us, made even worse by lack of treatment and uncontrolled seizures. I'm not going to say anything good or bad about any medications, that is not my job, but I can certainly tell you that her decision is a very risky one, and readers should be warned about it.
45
@Javier Completely agree.
6
@Javier - I have never heard the term SUDEP until reading this article. Not one single neurologist or ER doctor that I have been to (pretty much all that Seattle has to offer) has ever mentioned the term. Bathtubs, bicycles, and stoves? Oh, yeah. Lots of warnings but nothing about SUDEP. My heart did stop twice though during seizures (while taking meds) but never when I quit taking them:)
4
It is important to have DNA tested for a battery of epilepsy genes, or a whole exome sequence, because there are coming along specific treatments for specific types of genetic epilepsy, which may account for more than half of cases.
4
Wow, what a wonderful article. Thank you for sharing your experience and educating me about epilepsy. I hadn't really known much about it before other than knowing that it caused seizures. I feel as a little more of my ignorance has been removed by reading your article.
4
As the result of a head injury causing some damage (I'm certainly not sure what the actual damage is) I finally found a neurologist who prescribed Keppra, a drug which seems to be particular to me and to head trauma epilepsy in particular. I had been taking another drug for many years which was not completely effective. Not taking a medication is to my mind a bad idea.
There are many types of epilepsy with a very wide variety of effects. I have been very fortunate, the cause not inherent since birth but due, as I said, to head trauma. Whoever is reading this piece must be aware that, as I said, foregoing medication can be very dangerous.
16
@Jordan Davies I had the exact same experience with the same medication. Keppra is by far the most effective medication I've encountered to control my seizures. It didn't stop them completely, but it put it in the realm of possibility to control my Epilepsy, because it allowed me to see a way out.
I take 3 other medications, and have to manage a lot of elements of my life to reduce stress and manage my sleep cycle, but I'm finally at the point where my life is starting to feel normal again. I hope you also get to that point with your Epilepsy, if you aren't already there, Mr. Davies.
1
Half a dozen medications isn't very many. After 2 nocturnal grand mal seizures my freshman year of college, I went on Tegretol, felt bad for a while and then had an allergic reaction. Next, Dilantin for a few years, Not bad other than not good for your gums. Went off of it after college and started having auras. Next, Primidone (not used often - not sure why) -was fantastic for 30 years!!! 30!!! No discernible side effects. Still the occasional aura but nothing too bad. Apparently it's not great for the bones so I tried something else (forget the name) and it made me angry at the world. Then something else (Lamotrogine) which gave me slight tremor and a few other lousy side effects. Currently trying Gabapentin which seems ok so far. I recommend finding a better/more patient neurologist and trying a few other drugs. They can work great and don't have to make you feel bad. And there are a plethora of options. Best of luck.
12
That’s really interesting; I was put on Gabapentin for migraines. I don’t remember the results from that specific medication, but it turned out the migraines were part of my menopause.
1
Thank you for sharing Liz! While we disagree politically on a number of issues, I have admired your approach to life, your compassion for weakness in others and in yourself, your love for God, and especially your open enjoyment of your life with your husband and children despite the challenges of epilepsy. We're both in the same stage of life--I married at 21 and have a 2-year-old--so it's refreshing to see someone like me, but with a platform, speaking out on the blessings and ups and downs those life decisions bring. Just wanted to say thank you!
2
As a person who knows someone who has epilepsy and whose seizures occur in their sleep and are accompanied by vomiting, I'm concerned that the author talks about not taking medications without a heavy emphasis of the risks of doing so. This includes asphyxiation for the person I know. Could the author please revise this article to warn others of the severe risks that may affect them if they decide to go without medication? Thank you.
23
@John , I concur. My brother died in his sleep following a seizure. My family had no idea it could be deadly.
12
@Laura it's called SUDEP. Stands for Sudden Unexpected Death in Epilepsy. There is no postmortem exam that can determine what exactly happened. Coroners usually list heart failure as the cause of death. To date, there is no way to predict it or or to prevent it. :-(
10
@John
The author did mention that if she had a different, more dangerous form of epilepsy, she might have made a different choice regarding medication. Apparently her seizures carry a lower risk. Each person must weigh the details of their condition and the risks they are willing to take for themselves, and make their own decision. The author did not in any way imply her choice was the right one for everyone, only for her.
3
I have now been on a trial drug, Cenobamate ( recently approved by the FDA) for 3 years. It’s “ better” at controlling my seizures than any of the 15 or so other medications I’ve taken for thirty years.
But boy does it make you feel horrible. I can sleep any time, night or day... but I fear my dreams. I have suicidal thoughts daily. Every 3 months I go to see my neurologist where assistants question me about the drug efficacy and then run me through a suicide questionnaire, say thank you for sharing and bye bye.Slap $50 on a card. Nothing for the side effects.
The Neuro works now for the med, which soon I will be priced out of, now that it’s kosher with the feds. This med will cost somewhere between 10K-20K a year. That’s nothing, relatively.
Let’s figure that out with no employment or disability insurance.Try finding therapy. I’ve been.
It is no wonder that reclusiveness, solitude, guilt and depression are our bunk mates. The choice of living in the “ present “ w/o meds is a brave one indeed.
I wish you the best. And all of us.
13
Elizabeth, you deserve a million thanks! With the collaboration of such an important newspaper, you give a chance to millions to learn about a condition that is still so misunderstood and unfortunately mistreated by other millions! With your help, you allow so many to have an idea about a condition which brings so many limits to millions all around the world. It would simply be fabulous if the NY Times would be willing to publish information on such an issue on a more regular basis. If it did, it certainly would change the lives of very many in the right direction. As of today, IGNORANCE does just about kill loads of people who are the most normal even though they do live with an illness which is still quite misunderstood. If the NYT would feel the necessity to share all what is involved with such a condition, it would thus change the lives of millions at a time when so much more must be done considering how limiting epilepsy can still impose! To all of you who will be reading this article, may I thank you and wish that you will help changing the lives of ....millions!
3
Members of my family have for generations suffered from bi-polar disorder, depression, paranoid schizophrenia, post traumatic stress syndrome. And two members have committed suicide. Along with alcoholism and drug addiction there have been many problems.
Living while black and doing anything in America has had and is having an enduring and endemic harmful and stressful negative lingering malign historical impact upon black African American emotional, mental and physical health lives.
Mental illness is often mistreated and misdiagnosed particularly for a black African American family like mine as criminal behavior. While epilepsy is not a 'mental illness' because it has an obvious biological DNA genetic inherited origin, I believe that the same thing is true of the persistence of mental illness in my family.
6
A beautifully written piece that gives everyone perspective. I look forward to the next time I cut onions with my children.
2
As a person with a seizure disorder, I wish the author had not referred to people with epilepsy as "epileptics.". I am a person with epilepsy, not an "epileptic,"
17
@Liz C. THANK YOU!!! I made the same comment.
3
Please read what to do if someone near you is having a seizure. Be the comforter. It doesn’t require a medical degree, just common sense and a little compassion.
9
Thanks for this.
Many people do not know that the trauma of epilepsy isn’t so much felt during the seizure; you essentially black out then wake up, without feeling any pain during or having memory of the episode itself, though you may wake up in pain if injured during the fall.
The trauma, PTSD really, happens between seizures, when you cross the street, hike on a high ridge or swim in even shallow waters, when you have a dizzy spell or headache or feel faint. It is a devil lurking behind you constantly, and it seriously altered my professional career, mental health and how and when I interact with people. The embarrassment that comes with having a seizure in public is a strong incentive to stay private.
So columns such as yours do wonders in showing we’re not alone.
Have you tried CBD? It’s not an elixir, but it has passed peer-reviewed research that shows its efficacy. No side effects, and it also helps with sleep. If nothing else, it’s a placebo that gives me some peace of mind.
17
@JP This is very true. While many can manage to become seizure-free with medication, the trauma is really that constant worry about every time you feel faint. I hope that gets better with time as confidence in medication grows.
5
I have had eppilepse since I was in middle school I had grand mal and tonic clinic seizures. iv never known how to feel about eppilepse. I mostly think about how it relates to the people I love and the looks on strangers face. I dont remember the seizures just the people stare at me as a wake up disorient and exhausted. I feared that people would always stare at me scared, unsureand full of pity.
3
i love you, liz. so glad the times hired you.
1
Wonderful writing. So good that it delivered epilepsy out of dark “otherness” into daylight.—Jeri Spann (wife of Russ)
21
Stuff happens; kids are born with cancers, with one leg, two heads, it's the nature of DNA mutation that some will have these physical problems. You get on with lifel The fact of your epilepsy is just a fact; it has no existential meaning. You accept what you've got and you adapt to your circumstances. That's all. Everything else is pure solipsism. I write this as a person with a disability. It's your only life and you get to live it with that interesting side show called epilepsy. Once you accept, you will adapt and it won't be a big deal, just "How it is".
7
This statement feels quite unfair to me -- "Neurologists tend to be impatient with pickiness about medications, and perhaps they have a point." As an epileptic I have found my neurologist -- one of the top epilepsy doctors in the world -- to be empathetic to both seizures and side effects, and to do everything he can to prevent his patients from both. Maybe it's time to find a new doctor.
And your statement "I wouldn’t necessarily advise it" in terms of taking medication seems an unwise message to pass on, to say the least. It's great that you don't have to, but even for those of us who don't have a "catastrophic form" it's often the best course of action.
16
I completely agree, I have an excellent epileptologist who has provided me with some of the newer medications that have me totally asymptomatic. He is a kind and patient physician who has been able to keep me on my job, traveling with my husband, and able to forget that I will always have adult onset secondary partial seizures
7
@Sascha
The author is saying they wouldn't necessarily reccomend NOT taking medication and that they are only able to do so because their epilepsy is not that severe comparatively.
Most people can't seem top doctors unfortunately and many doctors have no interest in how side effects of treatment impact life. If you don't have the money to travel or go out of network and don't live in a major city there may be no good options for understanding doctors.
2
@JJ I understand that she meant wouldn't necessarily recommend not taking medication, though my phrasing was awkward. She is welcome to share her experience, but shouldn't be recommending -- necessarily or otherwise -- medical advice to people she doesn't know, in the form of an oped the thousands will read.
5
Ms. Breunig, thank you so much for having the courage and openness to write this piece. I would hope you will disregard those who are passing judgement on you for going off of medications. This is between you and your doctor. Until they have walked a mile in your shoes, I would hope people would be more in the mode of seeking information as opposed to passing judgement. Until they have experienced the debilitating effects of these meds, often requiring ever increasing doses to remain effective .....and until they have have been personally close to enough to see in detail, the trade offs and how you have changed your life habits to accommodate life without meds, then who are they to judge?
Unfortunately instant expertise and a propensity for quick judgement seem to be a hallmark of our social media era. Wishing you happiness and good health !
7
Bless you for writing this. Our daughter was diagnosed at age 9, no medication ever worked and the side effects took her out of having a normal adolescent life for years. She has had to be so brave. Two surgeries and 9 years later, she is 99% seizure free and transformed, truly. But this illness morphs, insurance companies are not keeping pace with treatments and one must be vigilant to changes that could provoke a seizure (hormonal, environmental, stress related, etc.). I hear your struggle and admire you so very much for showing us how to build a beautiful life alongside epilepsy. Thank you so very much for sharing. #teamcara
9
I was off medication for many years, I had a grand Mal in my sleep. Not a big deal for me but for the doctors immense. Basically my DR (I've since switched) said if I didn't take the meds she'd report me for driving (I was voluntarily not driving for 6 months as suggested and she knew that)
Now I have to take them to drive which since I don't live in a city is essential. I hate my meds and as you say getting sympathy or understanding is nearly impossible.
They don't process this in any rational way. It's maddening.
5
@NSH, California has such driving laws too and my neurologist back in the 80’s hated it because he felt it hurt epileptics because they were afraid to report their seizures to him out of fear of being reported to the DMV and losing their licenses. Mere drunks are free to drive without such reporting fears. The high doses of Tegratol he used to put me on back then to assuage the DMV left me so cross eyed and staggering driving wasn’t worth it even if it cost me good jobs that required driving a car for getting to project sites.
Thought provoking piece. Thank you.
3
Wow.
It is impossible not to have immense respect for Ms. Bruenig, her self-awareness and her strength in fighting the challenge of epilepsy.
She simply tells her story. And asks for nothing.
This from a commenter who almost always disagrees with her op-ed perspectives on politics and social issues.
But here I am 110% a supporter!
4
I had six seizures 32 years ago and have been on medication ever since. I have never found a neurologist willing to guide me through stopping the pills. One doctor told me that just because I haven't had a seizure in 32 years doesn't mean I won't. I don't notice any side effects from the medication I'm on. I take the lowest possible dose. But, I'd rather not have to take a pill I may not need.
4
@Ms. Pea Have you seen an epileptologist (a neurologist who specializes in epilepsy)? They will always have more clinical experience/training and may be a wonderful resource to evaluate if you can safely try stopping your medication. A good epileptologist is worth their weight in gold! I encourage you to try to find one in your area if your epilepsy isn’t currently being managed by one.
3
I’d rather not take them either so find a proper epileptologist who doesn’t treat other neurological disorders. I wish I could recommend mine to you!
1
@Ms. Pea, I’ve never had a neurologist in over 40 years who even gave the slightest indication that going off once on was ever an option. I’ve been on them so long I couldn’t even tell what a side effect is anymore as anticonvulsants is all I know. The Kepra I’m on now is better than the Topamax which is better than the Tegatol which I suppose is better than the Dilantin but to tell you the truth I don’t care anymore, I’ll just swallow anything shaped like a pill.
1
For many the choice is to medicate or die. Side effects can be miserable but the risk posed to others, particularly those in your care must be considered. Why should others suffer that risk if the seizures can be stopped or mediated? People may lose their license to drive but losing control of a sharp knife or boiling water or a heavy cooking utensil can easily cause serious injuries as well.
Sadly, a wrong diagnosis is not rare. Doctors don't like to admit they're wrong or that their colleagues are mistaken but some simply don't have qualifications to make the diagnosis. This may have profound consequences, particularly for seniors. A person can be condemned to a lifetime of unneeded medication.
Should you call 911 if you see something that looks like a seizure? How can you possibly know for certain? Five minutes can make the difference between life and death.
3
I contest this - for many managing epilepsy, a seizure is not life or death. There are many different kinds of seizures, that exist in many different parts of the brain, which effect the brain in many ways. There are seizures so small in duration that they last milliseconds. seizures so long in duration, they last minutes.
My epilepsy is not life or death for all.
People seem to stereotype epilepsy as a chronic, life threatening, disease. This is not true. Epilepsy has many shapes and forms and is unique to all people. Epilepsy is a condition of life I live with.
The differentiation lies within *for all.* For some, the condition is life threatening. Or more visible. For some, the inverse is true.
Yeah, if you see a seizure or what resembles one - call an ambulance. Don't intervene if you don't know what to do. EG: putting your fingers in someone's mouth will actually compress the tongue against their airway, thus killing them.
I encourage you to learn more about epilepsy from academic sources. Try some forums and read up on the communities of people living with it too.
3
The writer describes her seizures as an occasional trauma, but she doesn't explain what that even means for her. How occasional? How traumatic? For many people with epilepsy, having a seizure risks all kinds of injuries from falls as well as life-threatening status epilepticus. It should be noted that one must wean off these medicines under a doctor's supervision. I have never heard a doctor advise someone with epilepsy to go without seizure medicine. All this talk about finding meaning in the disease is pointless if you're in the hospital with head injuries or intubated after a long-lasting seizure.
21
@Marie My doctor long ago did when meds went wrong. And I was for a long time. So this panic inducing response of yours is silly. Presumably the writer knows what kinds of seizures she has.
4
@Marie
A friend of mine with a grand mal seizure disorder passed away in the summer of last year, at 46 years of age.
His seizures began when he was a child following a head injury. For the last several years of his life, he was on the maximum plus plus recommended dosage of anti-seizure medication - a mega high dose that put him at risk of liver damage.
Yet he continued to have a seizure on average about every three months. His last seizure triggered a heart attack from which he never recovered.
1
@NSH Ethical journalism, even in opinion pieces, and perhaps especially in opinion pieces about medical issues, demands context, and we do not have that here. It's not enough to simply say, as the writer does here, that although she's stopped her meds and is happy, she knows stopping meds isn't advised.
Not only is it not advised, it can be dangerous without a doctor's supervision. That's not "panic inducing," but sober reality. In general, if a patient still has seizures, a doctor would not advise them to stop meds, but would try to find the right med.
The link at the end of the article on how to help someone having a seizure is helpful. But given the topic of the column, a link to the Epilepsy Foundation article about Stopping Medication would also be to the point: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medication
4
Elizabeth, thank you for writing this and to the NYT for publishing it. I send my love to all epileptics out there today.
I am one of the lucky ones, having suffered only one grand mal seizure my entire life, terrifying as it was. I was a brand new freshman in college, far from home, everyone around me a stranger. It was 1973.
For about the next 15 years, I was on medication and endured scares of sudden and unpredictable visual auras, involving flashing lights and complete blanks in my field of vision; a person could be walking toward me, with no head. This had happened a few times in high school but I was so frightened I kept it from my parents and friends.
Since a visual aura was the catalyst behind my grand mal, I never knew if another one was going to occur. I lived in terror of a seizure happening in a public place. Why? Because of the way my epilepsy was treated by the college infirmary, as an affliction discussed in whispers, with the word "epileptic" scrawled in glaring red pencil across the cover of my medical file.
For those who might still labor under the notion that epilepsy's characteristics include "feeble-mindedness", note that sufferers include Socrates, Dostoyevsky, Teddy Roosevelt, and Neil Young,
For anyone not afflicted: think of your most terrifying secret and then imagine living with all the world knowing about it--that's what it feels like to have a seizure in public in a world that rejects epileptics as normal human beings.
19
@Jan Beautiful, Jan. The last paragraph moves me, and strongly. I also have epilepsy. I continue to be surprised by the ongoing stigma and misconceptions - I even encountered it in graduate school!
@Jan Agree to disagree. I've had seizures in public. While definitely not fun, I generally feel worse for the people who saw them happen and were terrified than I feel about myself. I mean, people are scared, not judgmental.
@Jan
Alexander the Great had epilepsy too.
The epilepsy drugs I am familiar with are all also used to treat depression and other mood disorders. They are heavy and loaded with side effects, but doctors will lie and tell you they don't. I have lost 25 years of my life to Tegretol and Lamictal. From my very first dose of Tegretol, I immediately put on weight and my cholesterol shot through the roof. I was dizzy and sleepy but the doctor told me that would wear off. Ha ha. My memory, once legendary, is shot, especially after I switched to Lamictal 10 years ago. I'd rather wake up with seizures every morning than live like this.
5
@Sarah Being bipolar, I take both now. Topamax as well for migraines. I suffered migraines since I was a child. Lamictal was the drug that gave me my life back. Tegretol helps me with nerve pain. Lamictal allowed me to get off of Lithium and Geodon. Topamax has been the one to mess with my speech and dull my memory. But not being on it makes the headaches unbearable. I'll trade off being on the meds for the alternative. I do not have epilepsy. I am thankful for this class of medications. I hope that the pharmaceutical companies can come up with a cleaner drug for people with epilepsy to take that don't have all the side effects that have been described.
4
@Sarah I hear you on Lamictal. And yes I too was told it would wear off which I translate as you'll forget who you were before.
2
Well, for those of us with sufficiently fortunate circumstances, we get to judge which risks are worth it, right? But friends who know you well enoough to stay with you, showing up after midnight? Sheesh. And election results? I have yet to understand how getting results the next morning is somehow unacceptable. These choices are up to you, of course.
I grew up with a beagle who had epilepsy. She was great. And so my understanding is that seizures are unusual, and natural. Be there, provide for safety and comfort as possible, be there, be calm and supportive, be there, assist with the return to non-seizure reality, be there. It can be a beautiful experience.
Thanks very much for your piece!
4
@bill :
I wondered about those "friends" too! And the election results!
1
I wish I could say something profound or beautiful about epilepsy. My daughter has had this disease for 25 years. She is now 36 and lives with me. Though on medication she still has grand mals- walking into town, along a village path - when she is alone. I see her struggle with accepting this "blessing." I often wonder how much more her brain can take from the falls. Every time she has a grand mal I remain calm- I must. But you never get used to it. Yes, I would like the conversation to continue. Thank you for this piece.
16
Ms Bruenig, Please don't refer to us as "epileptics." It both defines our identity, and takes us back to a time when having epilepsy was viewed as demonic possession or at least something to feared and reviled. I am a person with a genetic brain disorder. I have to work with it, but I am much more.
14
@Carol Young Thank you for noting that. I say I have epilepsy or a seizure disorder. The word epileptics has a historically bad connotation
10
@Carol Young THANK YOU!!! I made the same comment.
1
My daughter has a life threatening form of epilepsy that has lead to status epilepticcus on numerous occasions. This required her being put into a drug induced coma to control the seizures. Being without medication is not an option but she has found a quality doctor who has gotten her seizures under control after years of chaos.
There are many seizure types and therefore many approaches to therapy. Some may even become seizure free after several years depending on the underlying cause. To risk ongoing seizures may put your life at risk if you have a generalized seizure disorder or are in a situation where you loose consciousness such as while driving a car. To go medication free should be under close supervision of a qualified doctor. Sudden unexpected death in epilepsy or SUDEP is 1.6 to 3 times higher than the general population.
11
Elizabeth - thank you, so much, for this essay. I have a young daughter who was diagnosed with mild epilepsy and some other health issues as a toddler. Fortunately, medication and devices control them. I often wonder if she suffers side effects that she cannot articulate because it is all she, and we, have ever known. I know she will need to come to terms with all of this as she grows and hope she can come out on the other side as gracefully as you have done. Your words help me feel closer to her and provide an intimate glimpse of what she may experience. For that I am very grateful. As a working parent of young children, your broader sentiments on time and love and choice are deeply felt and beautifully presented. What an unexpected Valentine's Day gift.
32
I had my first seizure at 38. I am now 68. I spent a week at Mayo's Epilepsy Monitoring Unit this summer. Epilepsy is the best teacher I have ever had and it is also the most demanding teacher I have ever had. I have learned so many things about life and letting go because of having had epilepsy. Not that I don't wish at times I didn't have epilepsy, but that really isn't an effective way to deal with the fact that I do have epilepsy.
I have gone without meds and taken meds and would probably never go without meds again. I am not crazy about the side effects but I would not want to burden my family if I fell and hurt myself and somehow needed 24/7 care. As I age, I see the responsibility I have to those who love me to remain as seizure free as possible.
I wish in your article you had not used the term "epileptic" but used the phrase "person with epilepsy". While epilepsy had defined many aspects of my life it is not my identity. I am many things besides my epilepsy and therefore choose to not call myself epileptic.
Thank you.
60
@Edith I am also a person with epilepsy and hate the term "epileptics"
4
@Edith THANK YOU!!! I appreciate your bringing to attention to the terminology. I agree 100%.
3
@Edith Having a "Seizure disorder" might work as and being "seizure free" for x amount of time is a fairly decent descriptor of how well your meds are working, or if you don't take meds, a way to share information about something that effects your life and to what degree. Most seizure meds have side effects and over time, usually months, side effects dissipate, or become tolerable. I had my dearest friend describe that period of time as
"waiting for my brain to return to it's almost maximum ability." She said this a lot when changing medications or adding a new one in an attempt to increase the time periods when she is seizure free. She eventually chose the medication route after a broken nose and a torn meniscus in her left knee. She is side effect free, except for mild hand tremors, and more importantly to her and those of us who love her, seizure free for well over a year now.
She calls her epilepsy, "humbling", as well as "my blessing."
1
Great article. I was so proud of my father, Robert Schuttler, who, when relatives thought my aunt Matilda shouldn't be allowed to hold a baby because of her epilepsy, not only stood up for her and told the relatives as much, but help found a chapter of Epi-hab in Evansville, IN.
34
Now and again you see articles about living with epilepsy. They were once rare and now they’re more common and it’s good to educate the public.
There are those of us with silent epilepsy. People don’t see the seizures, not the grand mal. Some people have sleep induced epilepsy and our seizures occur all night long, every night as soon as you try to fall asleep.
I’m sure like many with epilepsy I’ve been suicidal. But different from many, I’m suicidal every night and I can have 10 ,20 of these seizures and sleep eludes me. I’ve lived with them for over 50 years. And have learned to live with being severely sleep deprived. It probably has impacted on my performance but not so that it was obvious to other people. Most people didn’t know I had epilepsy. But it has made me reclusive because I didn’t have the energy to interact with other people. I wish I could say that things are different now. There is a long list of medications I have tried. As I have gotten older the seizures have probably destroyed enough my brain to be not as severe as they were when I was younger. That’s an awful thing to think about. So this is not a happy note. I just don’t want people to think that there’s a cure for this disease with its myriad presentations and drugs.  There has been progress, but no cure for most of us.
39
@SMS Hang in there. <3 I'm elderly, have some very significant life-altering medical problems, and have been contemplating suicide since I was 12 years old.
Gentle hugs.
11
@SMS I'm so sorry for your suffering. I cannot imagine it. I assume you have looked at everything -- including possibly medical marijuana? (I don't think you have to wear a Grateful Dead t-shirt for it to work.)
2
Thanks for sharing how it feels to be on your side, explaining epilepsy to those of us whose empathy is restricted by having no experience with seizures or the unwanted, deadening, effects of those meds. Experiences with depression and other meds' "side" effects lets me grasp how difficult it is to explain your experiences to others.
As for the meaning of epilepsy: seizures have no inherent meaning - - how you live your life, how you weave it around, despite and sometimes because of your condition, created meaning.
20
For someone who doesn't experience epilepsy the comment about meaning seems superfluous. Of course meaning is ascribed to all experiences. However making this statement sounds like a diminishment of the sometimes profound impact of some types of seizures, both in terms of expanding knowledge of what is possible for people to experience and the personal importance of it.
8
Yessss! Kudos to you for living life...yes it is, as you stated, what it is all about. Too often living life is left out of medical care- instead living the treatment regimen or rising the symptoms of the medication/intervention become life. As a mom of a child with medical complexity, I tried to ensure that being a kid was always a lens through which we decided how to provide care. She had really great times but too often that balance of what matters most/living life was out of whack because of breakdowns in the system and lack of family centered care and shared decision making. She died nearly 3years ago and it is the memories of living life that comfort and buoy our family. I pray you and your family share many more cooking lessons and fun times living life. Enjoy your Valentines!
26
Thank you for publishing this article. A few days ago, February 10th, was the International Epilepsy Day, a bitter disease, of which we rarely hear about. It is not enough known by people in general and we deserve more. I have been suffering from a very severe form of refractory epilepsy for the past 25 years. It has changed my life. I have between 4 and 6 seizures / month. I want to stay positive and I am still waiting for a new kind of medicine that could keep me away from seizures or at least decrease their number. I am not waiting for a miracle anymore. I even had surgery but seizures persist. I know I am not an exception unfortunately. There are 30% of the people who suffer from this disease who didn't find the right treatment and keep having fits. I am only in my 40s but I have completely lost my autonomy. A seizure can happen any time and I permanently need someone not far away so an accident can be avoided. My 5 years old asked me this week : " Mom, why does this happen to you all the time? I want to understand more." I realise she starts to be concerned about it. I don't have much choice. I can either get depressed and angry fighting against it and see the reality, that I can't win or accept it as it is and look ahead and keep going. I hope one day, our disease will be more clearly understood and cared about. For all of you, I wish you well !
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@Florinda
And, we all wish you well.
3
Hi there, fellow epileptic. Mine started when I was about 18, probably caused by a motorcycle accident but we’re not sure. Went through an Ivy League college having seizures during exams and whenever the disorder chose. Graduate school, marriage, a successful career and 2 wonderful, unaffected children. You learn to work around it, work with it and work through it. I’d not have anything different and while my seizures have become less frequent I will always both hate and love having had the experience of leading a very full life despite (or because?) of the epilepsy. Best wishes to you and yours, Ms. Bruening.
65
I was diagnosed with epilepsy when I was in my 20s; after my second grand mal seizure. I have been able to have a good, relatively seizure free life, on the proper medication. It’s been important to make allowances for what I can and cannot do; thrill rides and movies with lights(thanks Disney). I don’t drink alcohol, I control my diet, and keep a positive attitude. There are scars for sure, from a fall, or a car accident, and the seizures are little gaps in my memory. That hasn’t stopped me from a family, and career. I have great friends, and they don’t think any less of me because of this.
Epilepsy is a part of my life, but it doesn’t define me, or control me.
I am glad that this article has opened a forum for people to share.
94
Thanks much for your thoughts and your encouragement. I was diagnosed with epilepsy four years ago, at age 68. I am now on my third medication, and it works pretty well. Yes, I get tired. Yes, I need an afternoon nap. Yes, I am in bed by 9:00. But I feel pretty good and suffer only from terrible memory loss. Some people think an epileptic is dumb. Oh, well. Not my problem. I suffer few side effects -- either mental or physical. I'm walking and happy.
15
@pat knapp
I was diagnosed three years ago at 63. My medication makes me lethargic as well. I use medical marijuana. The compounds in certain strains provide energy. There are strains that address memory loss. I am a different person when I use medical marijuana. No more tremors, no more social anxiety. Look into it.
29
@Yappy Appy
Not much chance for medical marijuana in my state -- Wisconsin. I'll be dead before that happens. I'm certainly happy it's working for you. Good news indeed!
Elizabeth,
Thank you for your wonderful piece here. Although there are relatives in my Wife's family with Epilepsy and due to work where I had to be ready for Epileptic events, this grounds me with a look at the lives and humanity of the disease.
8
Epilepsy care underscores the huge problems with our system of "Sickness Care". "Seizure" is a broad description just like "heart attack", of "cancer". It is not well researched and poorly categorized. As a chronic condition, it is not a money maker for the medical profession but a money loser for the insurance industry. Patients are "parked" on medication without enough consideration of the considerable and long lasting side effects (which may include seizures, abnormal heart rate rhythm, serious depression, long lasting dependence and other critical problems). The issue of discrimination and fear of disclosure is one of the greatest problems.
14
Thank you for sharing your thoughts and perspective. I developed epilepsy at 38 and have been medicating ever since. I have also struggled with the side effects associated with the meds and wondering if it was worth it as they effect my everyday. But your last paragraph describing the trade off of time succinctly sums up my views in a wonderful way. I appreciate your piece and advocacy for the disease. Thank you
19
Thank you for talking about epilepsy. I was diagnosed in my late 30’s with epilepsy and I have been on medication ever since. Epilepsy is a lonely journey because on the outside you still look the same - no one can see the fragility of your brain. Would love to see a follow up about those of us living with this condition because of medication. As you pointed out, not taking medication is not an option for many. Let’s keep the conversation going.
32
A family member has had long time substance abuse issues and, for the first time last year, I witnessed him having two seizures at age 58. Happily, we were in the ER as he had been acting strange, unable to complete sentences and having trouble sleeping. It was extremely frightening to witness this as it was totally unexpected. We do not know if it is epilepsy but, he is now on medicines that have negative side effects.
The writer's comments are based on her experiences and I thank her for sharing this. I write because I wish we knew what was going on with him. Could his years of substance abuse have brought seizures on or, was he self-medicating, or was he having seizures in his sleep? Nothing showed up on tests but, he is very likely to have another seizure without medication. He is a very large person and I fear he might hurt himself or someone else if he has another one. We just do not know what happened to trigger this and are still on the journey to wellness for him.
4
@Wood They can fairly easily tell if it is seizures by an egg which looks at his brainwaves which will have the classic epileptiform waves. (That's why nothing showed up.) Some people have non-epilieptic seizures which are more stress induced. And anyone can have a seizure for other reasons, including substance abuse.
@Wood he should have an MRI. I know from experience! Epilepsy, siezures, and then undiscovered brain aneurysms.
How many such afflictions go unknown to the public? An article like this can, and does, provide some comfort for we vulnerable human beings.
Those who are lucky enough not to have a chronic debilitating disease can still have their own brand of distress, some don't even have names. And we may have personal insights from our lives that we seek solace in sharing.
Nosology, "the branch of medical science dealing with the classification of diseases." isn't even in popular dictionaries. So we don't realize that the variation of illnesses, both somatic and organic is infinite.
Thanks to the writer and the N.Y. Times for publishing this.
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@Call Me Al One of my sons had "absente" seizures for 15 years until he grew out of them, apparently, about age 17. It took a few years to figure out what was even going on when as a small child and he would suddenly trip while running or not hear me when I spoke to him. He was put on heavy medication age 6-16+, and yet, no specialist could ever say with conviction what his diagnosis was: "complex migraine", epilepsy? There is still so much that is frustratingly unknown about the brain.
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My seizures started in my mid thirties and they've never figured out why I get them. I too hated the medications and chose to go off of them after a few years. While I still occasionally get absence seizures, for quite a while I haven't had any of the grand mal seizures that make me feel like I was hit by a truck. Still, I live with the fear that someday they'll come back. And I'm one of the lucky epileptics.
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Many kinds of epilepsy exist. Mine is not visible. happens at nights, in my sleep. Taking medication that worth several thousands of dollars, no generic pills exist. Memory loss is the biggest side effect...taking notes every minute to remember my life. Need to take the medication same time, everyday. Luckily I have a job and an insurance to cover the medication. Life became a theatrical act after the diagnosis.
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@Art I have Transient Epileptic Amnesia that started in my 60s. I was having these hour-long spells of amnesia during which I spoke and acted, but after which were just blank. Worse, the seizures disrupted my general memory to the point that I have only spotty memories of 4 years of my life. I call those years the Black Zone. Fortunately I was able to control the seizures with medication that has only annoying side effects.
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@Art
I think it is not true that no generic pills exist. Those I get at my pharmacy cost very little, and are called the drug name, not a brand name.
But I live in Canada.
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@tam
Divalproex is the name of a generic anti-seizure medication available in Canada. Less expensive than brand name.
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Thank you for using your platform to raise awareness about epilepsy. My brave 13 year old just this week made a presentation to her home room on what epilepsy is and how to help during a seizure. Part of the Epilepsy Foundation’s Kid’s Crew, she is trying to find a way into normal-ish teen life and weighing the fear of seizures (her’s are infrequent but always medical emergencies) against the incredible isolation of being a rural kid with epilepsy and developmental disabilities. Every move outside our narrow orbit of support feels like a life and death calculation—even though it probably isn’t. Learning how to gauge risk accurately and not clouded by fear feels like a lifetime journey for the whole family. I’m grateful that she was born at this more open moment in human history, but we still have a ways to go. One in 26 people will develop epilepsy in their lifetimes. Most the the adults we’ve met with seizures tell us about it in a whisper. They don’t want people to know. It’s still not safe enough. So the possibly of a visible community of support is hidden from kids with seizures. It’s time to put old superstitions behind us and create real inclusion that would allow fuller integration of folks with epilepsy into the fabric of society with less stigma. Thank you for elevating our story.
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I liked reading your story and also the information page on epilepsy that followed it. Someone had a seizure on the street in front of my house a few years ago and I didn't know what to do except ask the nurse who lived next door for assistance.
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Thanks for this articulate piece on a much-misunderstood condition. You and my daughter are heroes who live effective lives with a cruel and undeserved medical condition. Thanks for this courageous article.
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Thanks Elizabeth,
As a fellow epileptic who has likewise opted out of medication for much the same reason--the side-effects--and who has the same main trigger--sleep deprivation.
I was also interested when you mentioned Leo Kanner in relation to epilepsy, as he was the first in the U.S. to diagnose Autism, a condition I have also been diagnosed with: albeit, it seems somewhat dubious, but I have read somewhere that a third of people diagnosed with Autism also have epilepsy; and it is consistent with this that you mentioned 'loneliness' as one of the characteristic features of epilepsy.
Your writing style was relaxed about the subject in a thoughtful way
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@Reuben
Yes, I noticed the mention of Kanner. My son developed epilepsy at 14, he was diagnosed with Asperger’s Syndrome at 10, and he is congenitally blind. Despite these conditions, he is a highly-intelligent working musician with perfect pitch.
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@JimH This might work with this one child but remember, this is one child. My past experience as a speech-language pathologist and my current and ongoing experience with an adult son on the more severe end of the spectrum tells me that your advice is very very limited.
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@Deb Thanks, Deb for the supportive comment. I prefer the term 'high functioning' to Asperger's, because the latter is related more to political events: i.e. the Nazi Holocaust, such as their occupation of Austria, where Asperger was based, and their replacement of the predominantly Jewish intellectuals associated with Asperger with pro-Nazi's, the beginning of the 'Final Solution'. The history of what happened at the time is very interesting, by the way.
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I am happy to hear that she is satisfied with her choice. However, she gave quite a bit of space to the side effects of medication, and very little space to the real medical risks and emotional traumas of some seizure disorders.
There are many patients with epilepsy whose condition is one where the seizures alone can kill the patient. For these people seizures are not only dangerous when they drive or on stairs etc. These patients can’t afford to just decide that it’s “worth it “ to have a seizure tomorrow. That seizure could be their last.
With so much time talking about how epilepsy has been conceptualized in general through the years, I would ask that she give slightly more balanced information about the risks and benefits of treatment for the wider community of people with epilepsy, not just those lucky enough to have a milder condition.
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@JJ
Elizabeth wrote about her personal journey with her form of epilepsy.
She makes no claim to being knowledgeable about all forms, although
her empathy for people who suffer more than she is clear.
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@JJ I agree. It's a beautiful essay for this time in the author's life. However, the severity of the seizures may change as perimenopause begins. Truly each person must live one day at a time, each day to the fullest, as the equilibrium of today is not guaranteed to be present tomorrow.
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I am the eighth in a family of nine sisters. One of them was diagnosed with what used to be called "Kala Azar", medically known as leishmaniasis, when she was fourteen. She survived this dangerous illness but a couple of years later suddenly began having 'grand mal' seizures. The seizures were controlled to a certain extent, and my parents tried to give her as normal a life as possible. This included becoming a trained school teacher (she was very smart -- her graduate degree was in geography), learning to play the violin, and otherwise being a much-loved aunt to a bevy of nieces and nephews. I was fourteen years younger and grew up in constant fear of those terrifying seizures. It was accepted that the others got married but that she couldn't because of the practical dangers involved in living as a wife and mother with this kind of disability. However, she was our leader in family games, community singing, and general fun, mainly because the malady was treated as an unfortunate factor that just had to be accepted. Her religious faith got her through the seizures that could be scary, to put it mildly. She died at the age of 78, not of a seizure but from natural causes. And to this day, we honor her as an example of fortitude in bearing the physical and mental agony of knowing that there was little hope of a complete cure.
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