Non epileptic seizures or pseudoseizures-what are they and what is to be done about them?
Nitin K Sethi, MD
Assistant Professor of Neurology
New York-Presbyterian Hospital
Weill Cornell Medical Center
New York, NY
I thought in this post of mine, I shall discuss pseudoseizures. As the name suggests pseudoseizures means “not true seizures”. We nowdays prefer to refer to them as non-epileptic events (NEE).
So what do we mean when we say someone has pseudoseizures? Let me illustrate with the aid of an example. A patient lets say Ms.XYZ comes to me for initial consultation for her seizure disorder. History is as follows. She has had 2 episodes where-in she was witnessed to have violent jerking movements of her arms and legs. First episode occurred in school after she got into a heated verbal argument with her best friend while the second occurred after a similar confrontation at home with her mother. None of these events were preceded by any aura. As per history she did not bite her tongue or have loss of bladder control though she says she felt tired after the events.
Hmm sounds suspicious for seizures you might rightly say. I tell her I would like to bring her into the hospital to do a video-EEG study to better characterize her seizure type (see my posts on seizure types at http://braindiseases.info). She agrees to the study.
EEG recording is initiated and is read as normal after 24 hours. The next day in the hospital, I tell her and her mother about the results of the normal EEG. A few hours after my discussion with the family, she is noted by the nursing staff to have a violent “seizure”. I review her EEG. On the camera I notice her to suddenly stiffen and then have violent out of phase (uncoordinated) flinging movements of the arms and legs. Her head moves from side to side and I overhear her yelling “too much, too much, let me go!!! let me go!!!). The event occurs while her mother and her best friend are by her bedside.
I look at the time locked EEG (EEG synchronized with the video in real time). While she is clinically having a “seizure”, her brain waves are normal (the brain is not having a seizure). A correct diagnosis of pseudoseizures (non-epileptic event) is made and she is discharged home with advise to follow up with a psychiatrist.
So what is a pseudoseizure?
1. It is not a true seizure but rather an episode or episodes which clinically look like seizures but are not accompanied by any EEG changes.
2. It usually has a psychological basis. In my experience I commonly see them in people who are passing through tremendous stress be it interpersonal relationships or at the job.
3. A person may have pseudoseizures to achieve a secondary gain (in the case of our patient, attention and love from her mother and best friend).
4. Pseudoseizures are not treated like seizures. These patients do not need anti-seizure medications. They rather at times need a psychiatrist to explore the underlying reasons for the NEE (conflicts in family etc).
5. Some patients who have true seizures (epilepsy) may also have pseudoseizures.
24 thoughts on “Non epileptic seizures or pseudoseizures”
(I would like to preface this by noting that after discussing my symptoms/episodes with family members and friends that I have been experiencing these things my entire life, but never made much ado about them, with the exception of the collapsing with one event happening when I was about nine years old when my pediatrician ordered CAT scan and a spinal tap testing for spinal meningitis which ended up being negative.) About 3.5 years ago I felt my brain flip over to the left, and I fell to my knees and couldn’t move for about 20 seconds; I was conscious and my eyes were open the entire time. My husband did not see this first one as he was at the sink washing dishes. Afterward, I was very frightened, crying and exhausted – I had to go to sleep right away. We decided to wait for me to go to the doctor to see if it happened again or if it was some fluke. It happened again (not quite as severe) about 10 days later. I went to the doctor, and his first course of treatment was to check my heart and brain. So, he had me get a CAT scan, EEG, chest x-ray, blood tests, ultrasound to see if blood was flowing to my brain, etc. All tests came back fine. He referred me to a neurologist, but the appointment was not for two more months. In the meantime he gave me samples of Zoloft (for the anxiety I was experiencing due to the situation) and Antivert (he thought it may be vertigo). The Zoloft made me into a blubbering basket case right away – I couldn’t stop crying. The Antivert didn’t prevent the episodes. He then tried Prozac, but with the same effect. He then gave me 75mg Effexor XR and 25mg Xanax. While these calmed me greatly, they didn’t stop the episodes. (I’ll interject at this point and mention that these episodes occur at a variety of times during the day, sitting/standing/lying down, whether a stressful time or dull/mundane time.) When I saw the neurologist, he ordered a dye-MRI, nerve conduction series and EEG. The MRI and NCS came back normal. He found slight bi-lateral spikes every few minutes in the motor function area of my brain. So, he tried me on Lamictal, increased my Effexor to twice a day and took me off the Xanax. The Lamictal did the same thing to me as the Zoloft. He tried a few other anti-seizure meds and they either did the same as the others or gave me migraine headaches. After this I began experiencing phantom scents and deja vu. Over the course of three years I ended up taking 300mg of Effexor XR daily. This dulled my seizures to a tic, but I would still have the more severe break-through seizures. After a few months of 300mg of Effexor, I and my brain couldn’t take the effects any more – agitation, insomnia, crawling sensation in my temples. My neuro weaned me down to 150mg a day, and he ordered a tilt-table test, but it came back negative. He then ordered a sleep deprivation test which provided his diagnosis of temporal lobe epilepsy with partial seizures. He started me on Keppra which was the first med that didn’t make me crazy, but it did break my skin out horribly and made me very agitated, sleepless and impatient – not very nice to be around. However, since this med was the first to be seemingly working we moved forward with it and added 37.5mg of Effexor XR mid-day and that helped with the side effects, except for the skin breakouts. About two months in, I started having breakthrough seizures again. However, I started noticing a pattern: they seemed to become more aggressive between ovulation and my period starting. I did some research and found that there is a such a condition and treating it with natural progesterone might help. I tried coordinating a medical plan with my gynecologist and neurologist but to no avail; my gyn was receptive, but didn’t know anything about it likewise with my neuro who rather than research it thought we could give it a shot. At this point I really wanted to see a neurologist that had experience with this sort of disorder. I researched that what I really needed to see was a neuroendocrinologist; however, none are in my area or on my insurance. I found an epileptologist and went to see her. I told her my entire story and she suggested I do a three-day video EEG scheduling it just before my period was to start. Two months after my initial visit I had the test done at home where I pretty much had to stay in bed the whole time since there is only five feet of chord between the battery pack and the video camera. Being 41 and experiencing perimenopause, my period started five days early – the first day of being recorded. I had severe seizures every day leading up to the video EEG, but not while I was doing the test. I only experienced some slight extremity twitching, brain flips and “spacing off” episodes. The only thing that registered on the EEG were the spacing off episodes. She told me that the good news is I do not have epilepsy. I asked her if my period had not started early and these seizures happened while I was on the EEG would that have made a difference to which she responded “no”. She explained that if I had epilepsy even non-active epileptic activity would have been detected in my brain waves while sleeping and recorded on the EEG. She told me what I do have is pseudoseizures. Needless to say, I was very upset. I know I should have been happy to not have epilepsy, but on the other hand what now? She said I needed to see a psychiatrist. I cried once my husband and I got in the car (as you may know, I am unable to drive until these episodes stop). I admit that I have experienced quite a bit of stress my entire life but have always dealt with it openly and spoken to my husband, family and friends to work my way through each circumstance. I managed my stress well – I didn’t and don’t suppress it leaving it unresolved which, after researching non epileptic seizures, often leads to such seizures. I also read that such seizures often occur after a trigger such as being confronted by a phobia, stress, etc., last for twenty minutes (give or take), are in the presence of others, and are of the convulsive type sans the tongue biting and wetting. I have had physical, unexplainable oddities my entire life, right down to unexplainable infertility which all would have been explained by temporal lobe epilepsy. So, I don’t know what to do. Do I seek a third opinion or give up and see a psychiatrist?
Hmmm thank you for writing in. Your history is long and I can only begin to understand what all you have endured. I shall keep this short since you have a complicated history and I rather not confuse you further. It seems the doctors initially were not sure whether you were having seizures or syncopal episodes (fainting episodes). That is why they looked closely at your heart. You can read more about syncope on my website http://braindiseases.info.
Then it seems you were worked up for seizures. Some EEGs suggested temporal lobe epilepsy but when you had your video-EEG, the events were determined to be non-epileptic. You have been on seizure medications as well as medications for anxiety and depression.
My advise to you would be to stick to a doctor whom you have faith in. Let him or her figure out once and for all whether you do have epilepsy or not.
Once the diagnosis is confirmed, the treatment shall be as per what it is.
Nitin Sethi, MD
Thank you for your advice. It’s been a roller coaster ride my whole life, and even if having epilepsy as a diagnosis would have been devastating for most, for me it was finally something concrete. It’s sad to say, but I haven’t had a doctor I have incredible faith in since my gynecologist retired five years ago (he was one of the last who was more like a good old-fashioned doctor who would help me with just about everything only sending me to another specialist when necessary). So, do you suggest I seek a third opinion for hopefully a “tie breaker”?
If you want to get to the bottom of this, ask your epileptologist to have you ON CALL for the start of your period to undergo immediate admission for video EEG with sphenoidal leads, which pick up deep mesial/basal temporal spikes that cannot be noted using the routine surface EEG lead grid; baseline and event prolactin levels as well as interictal and ictal PET/SPECT scans would help. Special volumetric MRI to compare the volume of your hippocampi (the key areas of your temporal lobes) would also be very helpful…as would an insurance company that would pay for this. Good luck.
thank you for writing in. Not sure whether I would recommend all that work-up but you are right in saying that a well performed EEG study is of immense help in ruling out or ruling in a seizure disorder.
Nitin Sethi, MD
hi i have had these siezures for about 7 years now and am still none the wiser. 1 doctor said it was tonic spasms. another neuroligist said epelepsy and then i seen another neuroligist who said it was all in my head. which i wasnt to happy about as i have been admitted to hospital many of times then i seen phsychiatrist who said she thinks it could be neads. these siezures are getting worse and i really dont no what way to turn now.my whole body shakes aggresivly all my muscles tighten up and my face looks like i have had a stroke.my heart rate is very agressive i struggle to breathe and my blood pressure drops. when admited to hospital i have anti fitting drug by injections. or valium to relax my muscles. is there any one else who experiences this. thanks rachael. i have had eeg ct scans.
I have had clonic tonic seizures ( grandma) for nearly 16 years now. Due to a 7″ open skull fracor. I have never seen myself have a seizure. I don’t know what my body does nor do I know what i look like. How do you know how you behave or look like during these episodes? From what my nuro surgen says my heart monitor just looks like static, not a racing heart. I do have documented seizures from an eeg, so my case is simple, the brain injury the cause. So I would find one doctor and stick w/ that one doctor. so he/she alone can do all the tests. then you should have your answer.
Now for my question, I have a grandmother who has after probably decades of them saying she has epilpsy, they now are saying the are pseudoseizures. as I stated before on the comment above, I myself do have documented clonic tonic seizures, I have had enough staples and stitches to know they are real. mine being from a head injury, so I know about seizures, I do not know about her faking them, or them being mental, not nuro. How are we suppose to deal w/ her? Do we ignore the episodes, or what? How do we explain to our children what they are, w/o causing her more emotional stress? hers were never called grandma or clonic tonic. to be honest not sure what they were called before the rediagnosis. I know she was on phenabarbitol, I think that’s how it’s spelled, anyways. But now she is very hateful and cussing up a storm. we just are not sure how to deal w/ that. and of coarse her still having her own care, her doc can’t really tell us anything, we were told only when she was in the hospital. Any Ideas?
thank you for writing in. The diagnosis of pseudoseizures (we now prefer to call them non-epileptic events) is made usually when a typical event is captured on a Video-EEG monitor. When the patient is having his/her so called seizure, the EEG shows no change in the brain waves (meaning the brain is working just fine and is not having a seizure). Then we have to determine whether these so called “seizures” have a psychological basis (meaning are they psychogenic and if so what is the underlying cause). Sometimes patients are doing them to gain attention, to avoid some other stressor in their life and so forth. At other times there is a secondary gain involved (like to avoid jail time, get disability) and so forth (malingering).
In some patients these events represent a conversion disorder (events are done on a sub-conscious level) and patients are not seeking any secondary gains.
So you can see, it is a very complicated process. My advise to you would be to speak to her doctor. Maybe a psychiatric consultation shall yield more answers.
Nitin Sethi, MD
Dear Ms. Pseudoseizure,
thank you for writing in to me. I have to admit your name (Ms. Pseudo seizure herself) grabbed my attention. Your struggle with this condition and your plea for help is heartrending. What follows is a detailed description of pseudoseizures. I hope this shall help answer some of your questions. My very best to you.
Nitin Sethi, MD
so my husband had been diagnosed with t.b.i. induced seizures from his tour in iraq, which he returned and was discharged medically in early 2005. his last seizure was winter of 2006. i witnessed this. he fell, hit his head, shortly later said he did not feel well, eyes were rolling back in head at times. then it happened. he became unresponsive , tensed up, and was convulsinsing. has been on depakote since. now, randomly two weeks ago he says he’s not feeling well. week later he goes to VA ER, depakote level was in the 40’s. it was 2 weeks prior to that 90’s, he was given extra depakote and sent home. he had been taking taking his meds as he should- i will testify to that. that night he falls to floor and what i know of he seizes- tensed, shaking, unresponsive. none wed., i believe from all the meds he was given over night at the hospital. Thurs. as driving to VA for appointments he seizes in the car went to VA ER, was there for MANY hours in which he “seized”. he was transferred to local hospital in which he had EEG, CT, and MRI done. all looking “normal”. so then he’s transferred BACK to VA for psych eval.? i’m so confused. the neuro wrote he was having non epileptic pseudoseizures-which i have never heard of! i have noticed his seizures are now just tensing and not shaking anymore like i first noticed. he is still unresponsive though. he will tell you that one is coming on…and then it happens…he has in been diagnosed with PTSD from his tour. but to go years without anything and this all of a sudden?! is this treatable or will this always be? he of course has stress in his life..who doesn’t but i can’t think of much that is new added/extra stress to cause this…i just feel so lost, overwhelmed, helpless!!
I sure hope you’re still out there reading these messages Dr. I had a fall out of a barn loft as a child…age 5 or 6, 15 feet or so and landed on my head. I know that I cut my nose badly and broke it and that I was a “mess” when my parents found me…I also know that they didn’t have the money to take me to a doctor at that time. I have no memory after the accident, but remember prior to it clear as day. I had 2 passing out episodes as a teenager, my family doctor admitted me to the hospital after the 2nd one but told my mother that he didn’t think I was eating properly. I recall sleeping alot growing up, often I would tell my mom that my stomach hurt or something like that so I could sleep all day instead of going to school. I was a straight A student, athlete and had many friends in school. I went to college after school, but after a year I decided to join the military. No problems until 1998 and then my husband and I bought a new home and I was mowing up our damn and flipped the riding mower over and it came down the hill on top of me. I had constant neck pain after that and saw 2 neurosurgeons and 3 family practictioners and all they did was keep throwing pain meds at me…pretty strong stuff. In 2003 I begged to see another specialist because the pain was increasing…finally this new neurologist looked at my films and told me that my neck was broken all the way through and I was even trying to grow a new disc. I had a C5/C6 spinal fusion in June of 2003…In December of 2003 I had to have a complete hysterectomy. After the hysterectomy, in June of 2004 I started having “episodes” of seeing lights and then vision and hearing loss…if I didn’t sit down or lay down I passed out. Doctors checked for syncopy, vasovagal?, you name it and everything came up normal. The attacks kept getting worse, I would find myself on the floow and notice that I had wet myself…not a fun thing to do mind you! I had attacks like that at least 10 times where I was incontinent. I have been told that some attacks I am just “out” no movement. Sometimes, especially here more recently, when I “go down” I have been told that my eyes are rapidly moving and one or the other hand is shaking…that’s it. When I come out of these attacks I am basically asleep and tend to sleep for up to 3 days straight, only waking up to take a drink or go to the restroom, although I don’t have any memory of doing any of that. My memory, since 2004, is extremely bad and I have actually forgotten things that were simple to me before… I have been told that I get extremely irritable prior to an episode, that my eyes get vacant and glassy, my voice gets very soft and that I am not able to do simple tasks or remember, for instance, my own phone number. I have had EEG’s…one was during an attack and the neurologist told me that it was if I was deeply asleep the entire time, even though my eyes were open and I spoke to him appropriately when asked. The second EEG showed slow brain function on the left side. I also had a video EEG I think you call it and it showed normal, slow brain function on left side. I do know that when I am asleep it is pretty impossible to wake me up. My husband tells me that I prepare food in my sleep state and will eat some and be asleep before the next bite gets to my mouth..he said he has seen me holding a fork halfway to my face and be asleep. One neurologist said normal, one said psuedo seizure with no follow up of any kind. I am now due to have another video EEG at University of Louisville hospital next week and I am wondering if there is anything that I should ask for in your opinion? I am pretty lost here and really confused and I need to understand what’s going on with me. I thought it may be Kleine-Levin syndrome…I just saw a mystery ER and the person did what I am doing, but my new neurologist doesn’t think that’s it at all. He thinks it’s going to be subconscious to conscious brain problem? Do you think that may be so with my brief history and based on the tests that I have done already? I so appreciate it if you’re still out there and can write me on this.
I have neurocardiogenic syncope, depression, anxiety, adhd and non-epileptic seizures. My doctors have done testing since I was 16 (now 31) and have tried various treatments. The seizure activity was worked up about 6 months ago and was diagnosed as pseudoseizures. In the past 6 months the episodes have been increasing and more bizarre. Last week, after an incredibly unusual set of reactions to an antipsychotic, I had an episode in my psych’s office and she seemed incredibly confused. She prescribed a low dose of Keppra to accompany the lamictal and clonazepam I have been on for the other diagnoses. The first day I took it was the first time in years I did not even have a dull headache. I also did not have a single episode while on it. Naturally she wants to very slowly control the dosing of it and it seems to wear off quickly. Would there be any reason someone with pseudoseizures would respond positively to AED’s?
Great question Anneybo. Many patients with pseudoseizures “respond” to an anticonvulsant. The simple explanation for this is what is called the placebo effect. That said you need to maintain follow up with your doctors. I wish you good luck.
Nitin K Sethi, MD
I would just like to say that they events that you are referring to as pseudo seizures are not always due emotional stress. I recently had a grand maul seizure (a week ago as of monday) and have been experiencing small ‘black out spells’ to where my body would seize up, i would collapse, and 30 seconds later I would be fine but I couldn’t recall what had happened or how I ended up on the floor for about two and a half. After my grand maul I was sent to a neurologist and put on the anti-seizure medication Keppra it has helped so far it made them more frequent for the first four days that I was home, but it seems to help now. My EEG showed that everything was healthy as did my CT and MRI but the ‘placebo effect’ has nothing to do with the fact that the medication is working in my case because there are types of seizures that do not show up on an EEG, CT, or an MRI. So please do more research into this subject because there are other causes for this other than psychiatric issues.
Amen to this comment! My wife had brain surgery in 1984 to repair an AVM rupture. Before that time, she never had a headache or seizure on any kind. Since her surgery, she has developed a seizure disorder over the last 10 years. She has had EEGs done during one of her seizures and the EEG was normal! A couple of Neurologists said that her condition was Psuedoseizures which is a load of crap. Just because the EEG is negative doesn’t mean that there isn’t seizure activity deep in the brain. In the case of my wife, I believe they are deep brain seizures due to the trama of brain surgery and the AVM rupture. They are anything but psuedoseizures…
My wife has had seizures since birth, less after she became a teen. When I met her, she thought sh had grown out of them. While pregnant with our 4th child she started having partial-complex seizures, etc (verified with an EEG from strobe lights plus hyperventilation). After 4 yrs of this we finaly got a study scheduled for 1 month later at UCSF (coincidently it was scheduled to be 2 days after her period was over). No change in brain activity the 4 days were were there. The doctor said, (paraphrased) “Good new! You don’t have epilepsy, you have non-epileptic seizures, so you should see a Psychiatrist not a neurologist”. RIGHT…16 hour drive to be told that after only 3-4 days of observation? So now my wife is very frustrated with doctors. She still bites her tongue and cheeks, and loses bladder control in her sleep (just not at the hospital). And she stops breathing. She has had arythmias in the past but when she was tested, the doctors said she was normal, even though the nurse and I saw flat lines periodicly, and irregular beats at the ER (before we did the overnight pack test). BUT, she doesn’t have epilepsy according to some 20-something doctor at UCSF. As far as medicine goes, Lamictol swelled her lymph-nodes and gave her migraines (more than her normal migraines). Phynobarbitol made her a sleepyhead, but did the best to keep away the convultions, but not the blackouts. Keppra and Tegratol stopped the convultions, but made her blackout for upto 50 minutes at a time, several times per day. Now she just takes Topirimate (Toprimax) prescribed by the doc at UCSF. Now she has fewer blackouts, but stil has convultions and tongue and cheek biting.
This article was very informative, and I greatly appreciate the information. I very much hope the stigma associated with conversion disorders in general, and specifically that which those experiencing this condition in particular suffer is overcome soon. It’s actually that hope, and a heartfelt love and compassion which best frames (and motivates) my question.
My question to you Dr. Sethi is how does one overcome a family member’s own prejudices and the stigma they associate with having a disorder that hasn’t any somatic roots, so effective treatment can be sought for the actual cause of the illness?
My wife has suffered seizures since she was a young teen (now mid-30s). The best of care was sought for her, and after a period of “escalating second opinions” evaluation was made at a renowned hospital/university that they were non-epileptic in nature. As the narrative of that final medical consultation was conveyed to me by her family, the neurologist attending her said “it was all in her head” and that she was either “nuts”, or “feigning”.
They turned to homeopathy, using labs and other diagnostics the medical hunt for an organic root-cause provided to design a “course of treatment”. Gradually over a period of years her symptoms became more or less latent, though they do still manifest periodically to this day.
It is held as an “article of faith” by her and her family that there is an organic cause somewhere in the body that causes these seizures. This belief is reinforced by others of her family having had seizures at various times with tests all leading to the same diagnostic conclusion, and the same out-of-hand rejection of the diagnosis. Because the seizures are spread throughout my wife’s family (though only on one side), it is accepted as hereditary.
Sadly, as an “article of faith,” to question that belief objectively (even in the most humble terms) is akin to and is taken as heresy by all.
It must be said that my wife is of indisputable honesty and character, as is her immediate family, and much of her extended family. I have absolutely ZERO doubt about the validity or authenticity of her seizures, or those of other (extended) family members for that matter. Most all are successful and well educated, with very few having less than a bachelor’s degree and several have or are working on graduate or post-graduate degrees. It’s an irony not lost on me that in some respects the character and education I’m blessed to be surrounded by make for, at least in this case, great difficulties persuading a look at an alternative theory.
Objectively (at least so much as a husband can muster), her seizures aren’t terribly disruptive to our lives and we’ve adjusted to and achieved a certain “peace” with them. It would be “easy” to maintain the peace and status-quo, but for two thoughts I cannot expel.
1. I love my wife fiercely, and if these are representative of a conversion disorder then she is at best struggling with some part of her life or experience, and at worst…she’s suffering.
2. The literature I’ve read on the subject strongly intimates that if allowed to continue unresolved, it could worsen with time and age.
These two factors tear at my heart. For now, when the seizures do happen I treat the symptoms as the literature suggests for tonic-clonic seizures as best I can, and hope to find a “safer” approach to addressing the subject that doesn’t involve the “hemlock of heresy” or beheading by protective family members as a resolution.
Dr. Sethi, I know your time is precious to you, and that you’re reading this closing (should you still be getting updates on your post) makes me deeply grateful for your time and interest. It’s a complex situation, and though I’m not looking for a diagnosis, or even a suggestion of one, the tone of your article suggested that you might have encountered a person or people who couldn’t get past the stigma of being ill in this way. My heartfelt hope is that you might have had a success or two getting them from the problem they wish they didn’t have, to having had a problem they overcame.
thank you for your insightful comments and sharing your wife’s history with me. Non epileptic seizures (also referred to as pseudoseizures, non-epileptic attack disorder (NEAD), non-epileptic events) can be exceedingly difficult to treat and “cure”. A study looking at this issue found that only a small minority of patients stopped having their typical attacks after been informed about the non-epileptic nature of their events by the doctor. The way the diagnosis is confirmed (with the aid of video-EEG and showing the non-epileptic events to the patient later)and delivered to the patient and his/her family is also important. Confronting the patient and telling her “it is all in your head” or that ‘you are crazy” seldom achieves anything constructive in my opinion. I usually inform my patients about the non-epileptic nature of their attacks and then attempt to explore the reasons behind them. Is the patient suffering from anxiety/ depression (what is the cause of their anxiety disorder and depression), is there stress at home or at the workplace, is there any history of sexual or non sexual/physical abuse? In my experience the patient at the time of the initial diagnosis (if I am the one making the initial diagnosis of non-epileptic events) may or may not be willing to see a psychiatrist or consider psychopharmacology for their anxiety disorder and depression. I do not force this on to them and merely suggest that seeing a psychiatrist might be something they should consider.
I hope you find this helpful.
Nitin K Sethi, MD
Hello! I have had multiple pseudo seizures in the last six months, but I haven’t had one for about a month. I’m 16 & supposed to get my license next month, but I haven’t done any drives yet because no one knows how long I have to wait being seizure free. Any ideas on how long before I can drive?
I think it has to be a year with no seizures like. I would check with your doctor though or the DVLA.
Take care hope all goes well x
Hello. I first started to have seizures only in my sleep 5 years ago starting in 2009. On the day I had the seizure, I was sleeping on the couch. My boyfriend was on the computer and he heard kind of like a ghostly sound and said, “Babe did you hear that?” He looked at me and saw I was having a seizure. He called his step mom and then called the ambulance. I came out of the seizure and knew something happened but I did not know what. I remember the ambulance attendant leaning over me and telling me I just had a seizure and they were taking me to the hospital. When I woke up from the seizure I was confused and had a terrible headache. The right side of my tongue was bitten and my legs were sore. At the hospital I was told I had a seizure and then sent home. Two months later I had 2 seizures 2 hours apart, again seizures were only in my sleep. I went to the hospital again and was given an anti seizure medication. I also had a CT Scan and it came back normal. The doctors never really told me why I was having seizures or what type they were. They diagnosed it as a seizure disorder. I was told to follow up with my regular dr. I had to do all the research myself on my seizure disorder and found out what type of seizures I might have. I only have my seizures when I am sleeping. I came to the conclusion that I have Nocturnal Seizure Disorder. This seizure type is when the person has grand mal seizures only when they are asleep. My boyfriend has witnessed me having seizures and he says I have grand mal seizures because he has woken up with me seizing and has seen my face and lips blue and he says I stop breathing when I have seizures. Those are classic signs of grand mal seizures. Months later I followed up with my regular dr. and we told him about my seizures. When we told him I stop breathing during seizure and that my face and lips turn blue he said they were grand mal seizures. He put me on Dilantin 100 mg 3xaday. During this time he ordered an EEG and MRI. Both came back normal and showed no seizure activity. After taking the pill for about a week, the three times a day was just too much and we changed it to 2xaday. Even taking the pill 2xaday was just too much. I also have stomach problems and nausea, have had them since childhood. About 5-10 times a month I have stomach flu like symptoms and throw up after eating. Months before I had the first seizure I was having stomach flu like symptoms and it was like I had a stomach flu. I took the seizure med. for about a year. Then I started to notice I was losing my memory. I could not remember my cell phone number or my aunt’s last name. I decided to wean myself off the seizure med. I did not want to lose my memory any more than I had. Alzheimer’s runs in my family and I did not want to risk bringing that illness on faster. Weaning myself off the seizure med. I went through withdrawal symptoms of having crying fits, anger problems, and sleep problems as well. After getting off the seizure medication I noticed my personality was much better and I was happier than when I was on the Dilantin. Right now I still have seizures only in my sleep. I have a seizure about once a month, sometimes 2 a month. Other times I go one maybe 2 months without a seizure. I wake up after a seizure feeling like crap. I have a terrible headache, the right side of my tongue is bitten, I have peed my pants, and my legs are weak. I am also confused when I wake up from a seizure. I also have auras before I have a seizure. I have 3 types of auras. I have what I call the icky feeling aura. This one is hard to explain. The icky feeling is like an icky feeling that comes over me. I feel like a hot flash type feeling from my head down to my feet. My body gets tingly. My vision goes dim as does my hearing. I look at my arms and hands and they don’t seem to be mine. I also have the thought aura. This is when the thought “You’re going to have a seizure tonight” pops in my head and then later that night I have a seizure in my sleep. Then I have the smell aura. This is when I smell the smell of like a sauce cooking. This aura has lead to a seizure. I was taking a nap one day and smelled the sauce cooking smell and woke up later and had a seizure. Recently I had a dr. appt. and now the dr. thinks my seizures are psychosomatic. I looked up info. on this seizure type and I can say the dr. is wrong in his diagnosis. First he should not have diagnosed me with this seizure type without having seen me have seizures. I only have my seizures when I am sleeping. People with psychosomatic seizures do not have the seizures in their sleep. When I am seizing my body is stiff as a board and my eyes are blinking like I am being electrocuted. During psychosomatic seiz. the person’s eyes are tightly closed. I pee my pants during my seizures. With psychosomatic seizures the person does not pee their pants. I am also confused after seizure and it take me 30 minutes to over an hour to come out of the seizure. I also have auras before many seizures. Psychosomatic seizures have no auras. Well that is about it. Sorry if this post is long and rambling.
Are you still monitoring this? I would love to know how you are and correspond if possible. I’m in the same situation as you. I started having “episodes” when I was 55 years old. At first, doctors thought it was a stroke. I had a sharp pain in my head, half my face went numb, had a panic attack, a dark veil came over my eyes, the room started to spin and I was very disoriented. We rushed to the ER and after many tests, it was determined not to be a stroke, but for three years despite much, much testing (CAT, MRI, EEG, blood, stool,) nobody knows what it is. I feel like this started in perimenopause and now that it’s three years later, I’m in true menopause. I feel like I’m almost dead at this point. I’ve had many “episodes”, have constant daily migraines, my body is somewhat paralyzed (it’s possible it’s hemiplegic migraines), my body is full of pins and needles and a bubbly feeling, my brain feels dead, have absolutely no energy and am in bed much of the time, cannot think, have had tachycardia, have had so much panic, hot flashes and the regular stuff of menopause, but mine is so much worse. During these “episodes”, I do not thrash around, it is more of a focal seizure situation, but I’m disoriented for days and these happen so often that I’m disoriented almost all the time. I think it’s related to hormones. I tried progesterone therapy with disastrous results. My body went three-fourths numb and I had a migraine that I truly thought would kill me. I also have become histamine intolerant and ended up in the ER three times. I can hardly eat anything and have lost 50 pounds. I’m praying that once the hormones settle down, my system will settle down, too. The hormonal epilepsy you’re referring to is called catamenial epilepsy and I considered that, too, and still wonder. The “remedy” for that is progesterone, but like I’ve mentioned, it was disastrous for me. I’ve explored my emotions and stress level. It is definitely elevated from menopause and, yes, I have some emotional baggage that I’ve now dealt with. I feel like my body and brain cannot handle any stress at all–even a bowel movement will send me to the brink of an episode–so I mean any stress. So, yes, these “episodes” may be pseudoseizures, although I prefer the term stress seizures, because stress can come in many forms, either from a physical situation of menopause or a body that’s not functioning properly or an emotional cause, or a combination of both. My neurologist wants me to try Cymbalta. I’m hesitant, but might if it will help. Also, I’m seeing an Integrative MD, who is testing me for SIBO, Leaky Gut, etc. as problems here can lead to problems in the brain. I’m also seeing a therapist and a meditation life coach, both of which have help immensely. I’ve seen an acupuncturist, who I had high hopes, but I had an “episode” right after a treatment and it was a very bad one. It took me a month to get through that one. However, he did give me some Chinese Medicines that did help some. When I asked him if I could just take the meds and not the needle, he said no that they had to go together since one helps the other. Anonymous, I’m wondering how old you are. When this first started, I too, was still having periods. The first episode happened one week before my period, so it might have been catamenial epilepsy–I had my hormones tested in the hospital and was told they were ok. I also had them tested a year later and was still told they were ok. BUT, when I had them tested six months after that, I had a huge amount of estrogen and no progesterone (and that’s what causes catamenial epilepsy–the imbalance of estrogen/progesterone). Then two months later, I had no estrogen or progesterone! At that point, my periods stopped for good and it’s been a year with no period. I’ve been thinking that once I go into true menopause, I’ll get better, but having two “episodes” this week, I’m really worried. I had counted on this happening, and it still may as I go along. But, this situation is very upsetting. I have no life. When I’m in a migraine or disoriented state, I can barely communicate with my husband or my son, I can hardly go anywhere and stay at home most of the time. I used to be a bright, energetic woman and now I’m just a shell of my former self. Please, when is this going to end? I honestly feel like it will end. I have actually had a spiritual visit with God who told me that my serotonin level is very low and that an anti-depressant will help. It makes me scared when I read your experience, though. All through this, however, there have been some high points. I’ve become much closer to God and the universe, I appreciate life so much more and I love my loved ones deeper and appreciate them for seeing me through this. Without this illness, I may never have attained this depth of feeling. Life is precious and every day is a gift. Every day, I wake up with fear about what this day will bring in terms of pain or malady, but I lie still and breathe and calm myself and see what I can do about making the situation better. Sometimes, I cannot do anything except lie in bed and deep breathe. But, I am still alive and that is a true gift. I feel like this illness could have taken me several times it has gotten so bad, but I’m still going and I appreciate every breath I take. I really welcome any advice or comments to my situation. Thank you so much.
Hi Doctor Sethie
I was wondering if you can point me in some direction. Today was the third time in my life i had a syncope episode with digestive tract issues. About 9 years ago i had one episode with sudden severe abdomnal pain and passed out before boarding a plane. no further investigation. Not sure what exactly was happening as there was nobody to ask what it looked like. Then last year severe diarrhea and passed out again. Husband said i was rolling eyes, twitching, stiff, throat was making weird sounds like i was struggling to breath for about a minute. Felt horrific afterwards, awfull headache when coming around, weak etc. Went to ER where there was lots of vomiting but no passing out. Was told this was due to a stomach bug. Today had sudden abdomnal pain and nausea again, ran to the toilet and passed out on the toilet. Actually managed to get on the floor as i felt weird. Then remember calling for help and being semi concious with awfull headache and trying to figure out where i am, feeling something bad is happening having confused thoughts in my head. Felt like breathing was a struggle but got better as i came around. There was a big mess after me. Daughter called my husband and he found me stiff, then twitching, eyes rolled. I am down with cold at the moment, not sure if it is related. Anyway i am wondering if this needs to be investigated. It is quite rare and i am worried the general practitioner will fob me off. Maybe not neccessarily neurological issue but would like to know the cause. This last episode i thought it could be related to bee pollen i consumed (health supplement) so i thought i had a reaction to the food as this happened about 20 mins after i consumed it, but then there were no other allergy symptoms and i had this supplement once before.