Non epileptic seizures or pseudoseizures

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.

 

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18 thoughts on “Non epileptic seizures or pseudoseizures

  1. (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?

  2. 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.
    Personal Regards,
    Nitin Sethi, MD

  3. 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”?

  4. 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.

  5. Dear Anonymous,
    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.

    Personal Regards,
    Nitin Sethi, MD

  6. 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.

    1. 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.

  7. 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?

    1. Dear Amanda,
      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.

      Personal Regards,
      Nitin Sethi, MD

  8. 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.

    Personal Regards,
    Nitin Sethi, MD

  9. 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!!

  10. 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.

  11. 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?

    1. 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

  12. 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.

  13. 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.

    Best Wishes
    UH

    1. Dear UH,
      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.

      Personal Regards,
      Nitin K Sethi, MD

  14. 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?

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