Pseudo seizures for 2 years and getting worse

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Hello everyone, I am new here and this is my first post.

Problem Description:
I have been having pseudo seizures for about 2 years. The pattern is the same.

I am working, doing computer software development, which I like, and something frustrates me and impedes my ability to go forward. Usually it is a forgotten password or being locked out of some application I need. Other times it is as simple as forgetting how to perform a routine task, and then being unable to locate a document that describes the process. I am usually in a pleasant and rather upbeat mood until this “spell” comes over me. IF you could read my mind while these episodes happen, it would not be a flood of negative or angry thoughts. I remain rational, logical, and even try to maintain a sense of humor, as well as distract myself by talking about things I like such as woodworking or running, but even so, the shakes come and my voice stutters.

During these spells, I feel a sense of hopelessness and depression, though these feeling are not there under my normal state.

In any case, I suddenly get this jerk, like being tickled unexpectedly, or like getting an electric shock, a jolt without the pain of the electricity going through you, and fall from my chair to the floor. It is usually but not always accompanied by uncontrolled shaking or jerking or the arms and legs, lasting only for 1 to 3 seconds then stopping, only to repeat the cycle after a minute or so.

Along with this is a feeling over complete overwhelment. Even a simple task like searching an email folder becomes a mountain…much to difficult to do in this “other state”. I do not black out, forget where I am, or wet my pants.

I do feel slight nausea, and feel a heavy pressure on my chest. I stop working, close my eyes, breathe, try to relax, but it gets more intense. Eventually I get so fed up with the discomfort, with :”creating a scene at work”, or just being exhausted by the jolt-shake-release cycle that I go for the prescribed Benzos for relief. The worst case required six .5 mg on Nirvam (XANAX) to make the shaking stop,(taken one at a time at half hour intervals) but by that point I was intoxicated and could not even drive myself home, let alone work.

For the record, I take no illegal drugs, do not drink, and never had a head injury. I have had a lot of work stress for years, followed by a tragic death in my family that required me to discontinue life support. I realize we all experience loss, and my pain is no worse than anyone else’s, but I suspect my brother’s death was the primary cause, but the final straw that broke the camel’s back after years of job stress, sometimes approaching a hostile work environment. But I never had a seizure problem until about a month after my brother’s death.

Also for the record, I have never been sexually or physically abused, though I had a rough childhood – we were at the low end of the economic scale.

Attempts to Fix:
I have been to the ER 3 times for this, where after lying there for 4 hours, they released me giving me a shot of Ativan or an antihistamine and the word “follow up with your doctor”.
I have seen 4 neurologists in 32 years, including having continuous video and eeg monitoring at the UAB Seizure Monitoring Unit. They all said “You do not have epilepsy”. I is a conversion disorder:” with an anxiety component. They said to follow up with a psychiatrist and a therapist. I already did that.

I have seen 3 psychiatrists and 2 therapists, been on about 10 different SSRI’s and 3 different Benzos {Valium, Xanax, Clonopin, also for awhile took 3 different anti epilepsy drugs {Topamax, Equetro, and Lamictal), all following doctors orders precisely. So far nothing has worked, al least not for more than a couple of weeks. There are clusters – sometimes I go 3 weeks without an episode, sometimes I have 5 or 6 in a week, and even 2 or 3 in a day.

I took 2 Yoga lessons, but had a seizure during the second lesson with no identifiable trigger.

During this entire period, I walked 4 miles a day during lunch, and ran 5 marathons (slowly, like 4:40 to 5 hours). Yet I still get this problem and it is unpredictable. MY running and walk has since stopped, as I am so tired all the time I don’t have the energy to work out. I even tried going off ALL MEDS under doctor supervision, and it got worse, so now it is back to Prozac and Valium.

For a one month period I spent about 2 o 4 hours a day listening to relaxaction CDs from various New Age types, using guided imagery, binaural beats, positive affirmations, etc, and still I have the problems, also the frequent seemed lesser then, but I was on a short term leave of absence, and my episodes are triggered almost 100% while doing work related tasks.

My current shrink says it is Panic Disorder and maybe PNES. The therapist agrees. Yet after 1.5 years under their care I am getting worse.

I will probably try another therapist and continue to get my meds tweaked, though I would prefer to be on no meds. This is wearing me down big time, and I am asking for help and prayers if you are so inclined.

I feel that I have good, optimistic, and consistent attitudes towards life and people in general. No big conflicts that I know of. I have mentally forgiven people who have wronged me in the past. Overall, my life is good, and I am thankful, yet at the same time, bummed out to see myself melting down before my very eyes, and thus far being unable to stop it, despite many deliberate efforts to do so.

I have tried TM, Acupuncture, and hypnosis in the past for other problems, and never had positive results.

I am beginning to seriously wonder if one or more of the SSRI drugs I was on may have broke something that has made me MORE susceptible to falling under this spell. Yet going off the blasted things, which was quite unpleasant for PAXIL and EFFEXOR, rsulted in my feeling worse, even after being off for well over a month.

Any and all feedback is welcome. Thanks for listening.

Steve
 
I can relate to your problems Steve. I am heading out to do a EEG with new neuro, but will write you tonight. Keep your head up and know you're not alone kay!
 
Thanks for the reply, No Shame. I do hope that your EEG provides some insight for the doctors. During mine, they flashed a strobe light at varying frequencies and I DID have a seizure or pseuo seizure at a certain frequency. They repeated thesequence again and I had the seizure again at the same frequency. Desite this, though, they said it was not epilepsy.

So it is good news that I do not have it, but bad news becuase I still have the problem. I try to look at it philosophically that this is just one of those curveballs that life throws at you, and that it is there for me to solve or learn how to deal with.

Still learning...still not succeeding,,,,still not giving up.
Good luck in you efforts and lease post your resuls.. Steve
 
EEG and other things

Hi Steve. I wanted to tell you that i am new, and pretty green still whereas you have done much work, research, and made lifestyle changes. I am yet but a novice, but the EEG today showed no abnormalities, and the doctor was sure that Ep was not the issue. I will start a new thread so i can share this with everyone.

What i do know is that your attacks sound like mine as of recent, but the Neuro said its not epilepsy in origin, although the seizure activity in the past was noted by a respectable Epileptologist which this Neuro was not going to disagree with. However, my brain is irritable and prone to seizures, but i dont think medication is the answer for me. Maybe its not for you either--i can't tell you what is. I am in new territory as of today. Hell, everyday is new, but i hope you find your rock to sit on, ponder the possibilities and actions you can take to make yourself well, and then go in that direction. Don't give up on yourself kay!
 
Reply to NoShame

No, I won't give up, but sometimes I may need to kind words of someone like you to give me that little feeling to keep going...I hope I can return the favor to you. Thank you for your support

Steve
 
my brother finally let the words out "I don't think you are having seizures", He said it is stress... man I just wish he would read the things I give him. I told him yes, I am ok with the chance of having psuedo seizures. I told him stress is a trigger for my seizures. my tonic clonic have been controlled, but I also have abscent seizures and not sure I have any meds for that.
 
Hello everyone, I am new here and this is my first post.

Problem Description:
I have been having pseudo seizures for about 2 years. The pattern is the same.

I am working, doing computer software development, which I like, and something frustrates me and impedes my ability to go forward. Usually it is a forgotten password or being locked out of some application I need. Other times it is as simple as forgetting how to perform a routine task, and then being unable to locate a document that describes the process. I am usually in a pleasant and rather upbeat mood until this “spell” comes over me. IF you could read my mind while these episodes happen, it would not be a flood of negative or angry thoughts. I remain rational, logical, and even try to maintain a sense of humor, as well as distract myself by talking about things I like such as woodworking or running, but even so, the shakes come and my voice stutters.

During these spells, I feel a sense of hopelessness and depression, though these feeling are not there under my normal state.
Steve

Hi Steve,
You can have those symptoms you describe for a lot of reasons. Did anyone do a very throrough workup for possible cardiac disorders before making a diagnosis of psychogenic seizures? Some other possiblities you might explore are looking into gluten sensitivity, often misdiagnosed and which could cause the symptoms you talk about. Another possibility to explore is magnesium deficiency. Another biggie that can trigger your panicss is caffeine, if you use it a lot you need to withdraw slowly. Even half a day without caffeine can trigger awful headaches.
When I did have seizures, the symptoms included sudden panics, dissociation, and mood changes. Most of this cleared up when I got on a lactose free and gluten free diet.
Past a certain point, I don't think it really matters if the "spells" get labeled epilepsy or mental illness. I have very severe and irreversible brain damage from strokes, surgery, and spinal meningitis. Brain surgery for epilepsy failed. Years later I started seeing a psychologist to learn self-hypnosis to control my panic episodes etc.
During that time I also learned about the diet factors and changed my diet. I learned breathing techniques to control my breathing when a seizure started, which can abort them. It changes your brain blood flow, helping you relax as you take more conscious control over your nervous system. After about five years, I became seizure free.
I was a "bona fide" epileptic, having been monitored for 21 days straight prior to my failed surgery. But if behavior modification led to me becoming seizure free, we have to ask, did I overcome epilepsy or epilepsy behavior (psychogenic). I hope you take the labels with a large grain of salt-maybe a whole box. What you experience is very real, whether the docs you see can identify the cause or not.
There are many options to explore. Couldn't your drugs be triggering some of your symptoms?
The drugs, for seizures, "mental illness," etc. served to make my symptoms chronic and worse. Below are a few links for you to explore. Try not to despair too much. You're not alone and there's much you can do to work with your symptoms.

Gluten sensitivity is now clearly linked to seizures and brain damage. It may be you are having the seizures from chronic inflammation due to gluten sensitivity and have not yet become brain damaged by it.
--------

Gluten Free Diet Should Be Considered For Everyone With Neurological And Psychiatric Symptoms
[Health-and-Fitness:Diseases] Brain disease and neurological and psychiatric symptoms are strongly linked to gluten even in the absence of celiac disease or the abnormal blood tests for celiac disease. This physician author and celiac expert suggests that everyone with neurological or psychiatric symptoms should be tested for celiac disease and gluten sensitivity before a trial of gluten free diet. Even if tests are negative for diagnosis of celiac disease a trial of gluten free diet is suggested.
http://ezinearticles.com/?Gluten-Fr...urological-And-Psychiatric-Symptoms&id=450571
-------
The Importance of Magnesium to Human Nutrition - Michael Schachter ...... SAD, Schizophrenia, Sciatica, Seborrheic Dermatiti, Seizures, Sexual Health ... What are some of the symptoms of magnesium deficiency? ... anxiety, hyperactivity and restlessness with constant movement, panic attacks, agoraphobia, ... Magnesium deficiency symptoms involving the peripheral nervous system include ...
http://www.healthy.net/asp/templates/article.asp?id=541
---------
Misdiagnosis of epilepsy: many seizure-like attacks have a ...As many as 20% to 30% of epileptics may have been misdiagnosed. .... attacks before enrollment in the study was 20, and the median duration of symptoms was 36 months. ... One patient had a classic panic attack with hyperventilation, .... Differentiation of convulsive syncope and epilepsy with head-up tilt testing. ...
http://content.onlinejacc.org/cgi/content/full/36/1/181
 
Response to Zoe

Zoe,

Thanks for the detailed reply. I had NEVER considered gluten sensisitivty ( I don't even know what it means) but I will look into it and follow the links you supplied.

I DO drink coffee, and tried reducing the amount without success. I am really hooked on coffee to get going in the morning.

I have only ONE CLUE in all of this, but when mentioned to doctors seems to go unheard, or maybe that means it is irrelevant....but these spells are always triggered by some simple frustration like forgetting a password or even mistyping my user id - something trivial I admit, but nonetheless brings it on.

I even "talk to it" in my head, and say "bring it on, baby!" to not be intimidated, but it comes on anyway and suddenly all the computer tasks I do on a routine basis like searching email become overwhelmingly complex...and I am someone who really likes computer technology.

But anyway, let me look into the links you provided.Thanks

- Steve
 
Zoe,

Thanks for the detailed reply. I had NEVER considered gluten sensisitivty ( I don't even know what it means) but I will look into it and follow the links you supplied.

I DO drink coffee, and tried reducing the amount without success. I am really hooked on coffee to get going in the morning.

I have only ONE CLUE in all of this, but when mentioned to doctors seems to go unheard, or maybe that means it is irrelevant....but these spells are always triggered by some simple frustration like forgetting a password or even mistyping my user id - something trivial I admit, but nonetheless brings it on.

I even "talk to it" in my head, and say "bring it on, baby!" to not be intimidated, but it comes on anyway and suddenly all the computer tasks I do on a routine basis like searching email become overwhelmingly complex...and I am someone who really likes computer technology.

But anyway, let me look into the links you provided.Thanks

- Steve
Hi Steve,
Two more links for you below. You can do a Google search on "gluten sensitivity" "seizures" and turn up a lot more info on that. The diet might help, even if it turns out you have frontal lobe seizures-much to learn on this. It's easy to get overwhelmed with all the information, unfortunately, so we need to pace ourselves when exploring all the options for gaining control of our seizures. It might help to think in terms of something going on that's triggering your symptoms, and not get locked into one or the other. That's because if it proves to be some kind of seizure, the caffeine, etc. will make you more suseptible to having one, and so on. Hope these new links are useful.
:mrt:

Challenges in frontal lobe epilepsy - Zagreb Epilepsy CenterChallenges in frontal lobe epilepsy. Christoph Baumgartner, MD ... to their hysterical appearance they are frequently misdiagnosed as psychogenic seizures. ...
http://www.zagrebepilepsycenter.hr/default.asp?iID=IIMHH - 21k - Cached - Similar pages

The frontal lobes and neuropsychiatric illness - Google Books Resultby Paul Malloy, James D. Duffy - 2001 - Medical - 264 pages
Prefrontal lobe seizures are frequently misdiagnosed as psychogenic ... nocturnal events were psychogenic seizures, and his family sought a second opinion. ...
http://www.books.google.com/books?isbn=088048800X...
 
Zoe, I also was looking at some of the symptoms, and hypoglycemia is also a possibility. It is on my mind and my radar these days. Coffee is a red flag. Says it helps to keep the sugar levels in the blood. So of course we crave it. It can even mimic mental illness.

I can understand if blood sugar imbalances might cause an organ to malfunction, this could have the appearance of a seizure too. Sugar and yeast in the body can also have intoxication behaviours. This occurs when food sits too long in the intestines.
 
Zoe, I also was looking at some of the symptoms, and hypoglycemia is also a possibility. It is on my mind and my radar these days. Coffee is a red flag. Says it helps to keep the sugar levels in the blood. So of course we crave it. It can even mimic mental illness.

I can understand if blood sugar imbalances might cause an organ to malfunction, this could have the appearance of a seizure too. Sugar and yeast in the body can also have intoxication behaviours. This occurs when food sits too long in the intestines.

Robin,

YOu are right on about the caffeine! I was diagnosed with frontal lobe seizures, but now can see that caffeine was one of the major triggers, and the symptoms are also those being called "psychogenic." I think the diagnosis boils down to the opinion of a physician, not any concrete difference between a "psychogenic" or "epileptic" seizure. The difference is in the mind of the diagnostician not in any external reality.
:mrt:
 
Thanks again everyone.

I will followup on all these leads. I just started seeing a new doctor who claims he can help me, based on data from various tests already done and he has expertise with pseudo-seizures. I will follow his instructions to the letter (he hasn't given me any yet so I don't know what the approach will be) but whatever it is...,meds....no meds...diet changes...changes in thought processes....whatever...I intend to stick with this suggestions and see what happens. He said to expect to have positive results withinin about 8 weekly sessions.

I may not post for awhile, but eventually will let you know hoow things turned out.
Best wished to all of you
Steve
 
That is really encouraging Steve.
I am glad that you found someone that has a plan for you.
I will be thinking good thoughts, with a positive outcome for you.
 
Thanks again everyone.

I will followup on all these leads. I just started seeing a new doctor who claims he can help me, based on data from various tests already done and he has expertise with pseudo-seizures. I will follow his instructions to the letter (he hasn't given me any yet so I don't know what the approach will be) but whatever it is...,meds....no meds...diet changes...changes in thought processes....whatever...I intend to stick with this suggestions and see what happens. He said to expect to have positive results withinin about 8 weekly sessions.

I may not post for awhile, but eventually will let you know hoow things turned out.
Best wished to all of you
Steve

Good luck to you Steve! Go with whatever feels right to you.
Best wishes
 
:cheers:

Welcome to CWE Steve. I see you have found two of our members that are very well versed in some of the dietary and chemical causes of seizures. Robin and Zoe really look at this closely. I would look into this and discuss with your doctors.

One thing I noted with these activities happening at work and on the computer is photosensitivity. Strobing or flashing lights in a work place or the computer itself may be a source of the issue. Think about that one as well.

Again, welcome to our site.

:cheers:
 
Hi Steve, welcome to our forum. It is friendly here.

In Europe pseudo-seizures are called NEAD. Non Epileptic Attack Disorder. They diaganose it with Video EEG. You said that you have had that test twice.

You are on caffeine. The way I got off of it was by drinking herbal tea, without caffeine. I did not notice the difference. I am completely off of caffeine. Another thing you mentioned was the computer. A lot of us have problems with seizures and the computer. What I do, is wear polarized sun glasses. That works. You can get them at WalMart or another store. When I do not wear them, I start having abscence seizures after a short time on the computer.

Stress is also another big one. My doctors from the time I was a child told me to avoid stress. This is not a stress free world. I listen to melody music, watch old movies and lie down when I have to. Instrumental music is another type of music that I find relaxing.
 
Thanks for the comments, Feast. I have been using an LCD monitor for a year, ,while the seizures have been at me for 2 years, so I don't know if there is any correlation. Under the olderer CRT monitors, I used to get headaches of the refresh rate was too low, like 60hz, but the better video card usually supported higher. MY CLCD monitoor has only one choice available - 60 hz, but it is clear and flicker free.

I had a near seizure today; at work, in a good mood, beging quite productive, and simply trying to save a downloaded datafile from Excel 2007 to a CSV file. IT kept hanging up my computer and I had to reboot. I could feel the frustration building and the overload coming on; I took a Valium, but still felt quite "at risk".

I think EXPECTATION has a lot to do with it. I figured it should take 10 or 20 seconds to save a file into a CSV format so I could import it into another application, but over an hour went by...why had something so simple become so difficult? I dunno but found a work around by forst converting to Excel 2003 format, then doing a "save as". But I could feel the overload trying to get me and no matter how much I tried to make light of it and make a joke of it to myself, as well as remind myself that it really didn't matter - in spite of this attempt to keep a good attitude I could feel my body wanting to just drop and shake on its own.

PRobably the Valium saved me today, but on other days, even larger dosages do not control it, and the frustration can be much less like a locked out password...

I will keep you all posted when and if progress is made. I agree that I should cut down or eliminate coffee. Very difficult. Harder than quitting smoking which I have done.

MY own theory is just that too much stress for too many years broke me down to the point that a trivial amount of stress can trigger a seizure.

I have run 4 marathons in the past 3 years, and as expected, the forst 2 to 5 days after the race I was pretty sore and not able to run. But after a week or 2 I was back out it. For some reason, I seem to have no resiliency to he sress, which is mostly gone by now.

I have tried listening for a half hour or longer per day to relaxation music, new age binuaral beat stuff that is supposed to put you into alha or theta states, and plain basic relaxation with a calm female voice walking you through a garden, etc. but this has not helped.

The journey continues. Thanks again all.

Steve
 
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