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TheHam

Undiagnosed seizures or "fake" seizures?

Hello, and thanks for reading this! I feel silly asking for help, and am half expecting no response.

Anywho, I'm having these odd episodes.  Basically, I feel very, very tired and my tongue feels heavy (?) then my eyes deviate upwards and I get head drops (my head drops backwards).  I become almost drunk~ I can't balance and I have little control over what I'm doing; I wander from room to room, on unsteady feet of course, repeat things, sway back and forth... all sorts of odd things. There's no twitching or jerking involved, other than the head drops and occasional odd movements that aren't nearly as quick as the tonic clonic movements I've seen in videos, and I remain fully conscious.  I can even talk, but it's an effort and my words are often slurred.  I sleep for an hour or more afterwards, and sometimes am "drunk" when I wake up.

I'm a 23 year old female with depression that is being succesfully
treated with cymbalta.  I had these "incidents" before the cymbalta,
however, and was even tested with a waking eeg when I was a child as I
was thought to have absence seizures.  The eeg proved to be
inconclusive.  I don't have a copy of the results now. :-(

Honestly, I'm a  bit worried that I'm "doing" these on purpose because I'm conscious during them, and have discovered psychogenic seizures.  It scares me a bit that I fit the profile in gender and age, but I'm clinging to the knowledge that I was suspected to have seizures when I was younger. That last bit actually makes me think maybe they ARE psychogenic, since why would I WANT to have real seizures? I hope you see where I'm going here.

It'd also help if you shared information about your episodes if they are similar. Basically, I'm a sponge right now. Please give me things to soak up and consider! :-)

Comments

Re: Undiagnosed seizures or "fake" seizures?

ok spounge.  there are several things.  1.  there is non-epilectiform seizure.  pseudo-seizure, psycohogenic seizure.

the being aware stuff is not that uncommon.  do some research on simple partial, and complex partial serizures, the post ictal phase of the seizure. you may not be remembering everything that is happening.  not unusual either. just for starters.  check the side effects of the meds you are on.  the idea that you were checked when you were young is a good reason to have this checked.   many new diagnostic tests are available that may be of help. 

things to consider.  talk to the doc. tell them what is happening, but not that you think you are faking.  i don't think you are.  let them figure that out.  you tell them what is happening to you. 

i have simple partial, complex partial, and other types of seizures.  i have had them for over 40 years.  one more thing is that depression and seizures can be related to each other, and some of the treatments are used for both.  Remember that both seizures and depression are problems of the brain,  not of the mind.  you are not crazy.  feel free to e-mail if you have other questions.  ish4031eagle@aol.com  rikk

Re: Undiagnosed seizures or "fake" seizures?

Rikk,

 Thank you for your response.  I will certainly check the side effects of cymbalta, but the episodes were occuring before I took it.

I think it's wonderful advice to keep the possibility of psychogenic seizures unsaid... I tend to wear my heart on my sleeve, but in this instance (as well as in many others :-p), it would not be a benefit in any way shape or form.

Do you know of any studies about the relationship between depression and seizures?

~hams

Re: Undiagnosed seizures or "fake" seizures?

Hello Hams, nice meeting you. Maybe I can shed some light on this subject as I just came home from the hospital after being there for 7days for a VEEG (video eeg). It did show some (spike n wave)epilepsy of (jerks)but not alot. Mostly it was pretty normal meaning NES = non epileptic seizures = "fake"? Stiffening n Flopping. I do have the auras of smells and strange feelings in my head. I am semi concious and very sleepy afterwards. I am told that With NES that it is a deep rooted problem that you are not even aware of and it is your bodies way of releasing the tension that is built up inside,so you have the seizure. No I am not crazy and neither are you if this is what is happening to you. These are very much REAL seizures just not from abnormal brain activity (electricial). Epileptic and Non epileptic seizures look the same and many people have been misdiagnosed because of this. When you get a chance ,Google " NES " you will find alot of info. Hope this is helpful to you. Good luck and your in my prayers as this is a long hard journey to go through but you can do it with the faith in God. People here on this site are always willing to help and listen. God bless you

"Guard me as the apple of the eye; hide me in the shadow of your wings." ~Psalm 17:8

Re: Undiagnosed seizures or "fake" seizures?

i have complex partials that can go into secondary generalized sz's. I know how you feel about "Am I making this up, why would I want to?" because your concious.  I would have minutes to hours of zoning out and saying or doing odd things repetitively. I would feel as if I was stoned- staring at things and seeing the world very distorted. I felt disoriented and weird. Sometimes I wouldnt recognize people and my surroundings and try to run away. I also can have pretty violent convulsions. I have had my family say it's psychogenic too just because they don't want me to be epileptic- but my doctor assured me it was epileptic in nature and my first EEG five years ago came out abnormal even though my video EEG came up with nothing and all subsequent EEG's came up with nothing. If you read what is not "normal" for an epileptic seizure it can scare you. I'd read about psychogenic sz and I'd say "But I do bicycle kick, I do scream, I do seize for a long time, I do respond at times..." but then I'd read about frontal lobe sz and it would talk about bicycle movements, screaming...things that were signs of fake siezures. All seizures are different. Being conscious isn't neat and tidy. It messes with your perception of the world. Read up on psychogenic, but from what you say I don't think that it is.

Re: Undiagnosed seizures or "fake" seizures?

Thank you very much for your input. The most useful bits, to me, were these:

I'd read about psychogenic sz and I'd say "But I do bicycle kick, I do
scream, I do seize for a long time, I do respond at times..." but then
I'd read about frontal lobe sz and it would talk about bicycle
movements, screaming...things that were signs of fake siezures.

 You're so right. There was definitely overlap, just in the little bit that I looked into it.  The first link that came up was this: http://www.aafp.org/afp/20050901/849.html, and table two in particular struck me. I mean, some of the "signs" that a seizure is "fake" are just absurd.

*associated (often multiple) psychiatric disorders* Really? Comorbitity means one is not real? I think they're MEANING to say *if the person appears to be a hypochondriac* or *if the person is a known borderline personality with manipulative tendencies* but that's not at ALL what is said.

*Avoidance behavior during seizures* mmk... So, if I know I have a seizure coming on, and I take myself a little more private instead of making a fool out of myself, I'm faking it?

*ictal crying, weeping* If this means crying after, then yes, I do! Not all the time, but sometimes I'm so frustrated and embarassed, I just cry. :-(

*Flurries of seizures or recurrent
pseudo-status epilepticus that lead to multiple emergency department visits or
hospitalizations* So so... if I have a bunch of seizures, and they scare me enough that I go to the hospital, I'm faking?

And on and on. This "list" seems so arbitrary and prejudiced!

All seizures are different.

YES! I mean, this is only logical, is it not? Not only is everyone's brain wired differently, but also the electrical activity is different too! So, say if there happened to be the same TYPE of activity in the same PART of the brain for two people.  Seizure would still manifest differently, because, well, brains are all sorted differently!

Being conscious isn't neat and tidy. It messes with your perception of the world.

 YES YES YES! I *think* I'm fully aware, but my perception of reality is skewed during the seizure.  So, even though I think I see everything, my brain itself isn't able to see that I'm not seeing. If that makes any sense. And I'm not talking in the visual sense :-p. 

So... in short (after the long), thank you. Your response helped me come to terms with the possibility of having "real" seizures and also to prepare for the possible battle I have ahead of me.

~hams

Re: Undiagnosed seizures or "fake" seizures?

because I have a diagnosis of Bipolar Disorder and Generalized Anxiety Disorder (along with PTSD) my Neurologist has often insinuated that my seizures are "psychogenic" because the only 2 EEGs I've had have come back normal - though she acknowledged that a lot of people with epileptic seizures have repetitive EEGs that are normal (this after I point blank questioned her).  My MRI did show a imbalance in the Temporal Medial Lobe.

I started having them within a year of a horriable car wreck where I suffered a head injury.

I can remember bits and pieces of my Partial-Complex Seizures, I'm always either in a brain fog for several hours later or fall into a deep sleep, I come out of them confused and disoriented and yes sometimes panicky and I have cried after 1 or 2 of them due to the panic of being confused and disoriented and once - I didn't even know what my name was (which created lots of panic).

I'm not faking them because, as you said, why on earth would I want them?  They are frightening, I don't know when they will happen, and I'm not legally able to drive.  None of my symptoms meet the supposed guidelines of "psychogenic seizures" and yet because I have those psychiatric disorders already on my history - the Neurologist won't look past them.

Re: Undiagnosed seizures or "fake" seizures?

Pewter,

Thanks for the response. :-)

 ~hams

Re: Undiagnosed seizures or "fake" seizures?

You do not have a problem, your neuro does.  In running support groups for over 30 years I came to conclusion that the biggest single mistake that neurologists make is in diagnosing emotionally driven pseudo seizures.  I have seen over a dozen people diagnosed that way, and all of them were later diagnosed with real, but hard to read seizure conditions.  And in each case, had the neurologist paid any attention to the factors that would show a real seizure from a fake one, none of these diagnoses would have been made.  They were made by lazy neuros who were tired of looking at non descriptive eegs and did not want to make any effort.  

I am sure there are cases of pseudo seizures.  But to show you the travesty of the entire thing, not one of the people I know who was diagnosed one way then the other was told "gee I made a mistake" when it was realized that the seizures were real... the comments were more like "gee you ALSO have real seizures too". 

 I was lucky back in the 1940's because people back then they were not looking for pseudo seizures.  Here I was a kid with seizures which were not showing up on the EEGs.   And I had had undiagnosed fear seizures when younger... TLE driven.  Some smart alec today might look at that and say "ah ha.. .this kid has pseudos"   In a humorous song I once wrote about neurology I used the line "he's not partially complexed, he's just over sexed".

People who have pseudos, I understand from people who have really studied it, do not have many of the classic movements and reactions... so there is a list of typical symptoms that a traditional seizure would have.  Just knowing that a patient has some of these should tell the doc something.  For example, when blinking lights set the seizure off.  There are too many tell tale clues to a real seizure, but in the cases I observed, the neurologists had discarded them, not even considered them. Someone having typical nocturnals is not faking.  Also someone have a variety of classic types certainly isn't faking.

Thank goodness, I did not have to put up with some neurologist telling my mother that I had emotional problems.  But then again, it was the pre dilantin era, and the meds they had then were enough of a nightmare.  I might have preferred the psychiatrist.

WALT