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Pseudo Fits Annyone Been Told They Have Those? (Page 1)

Dear everyone,
thismorning I went to see a new neurologist, he said that the things that I decribed to him were strange, he said he has a strong beliefe that I am having partial complex seizures and also pseudo fits. I am 21 yrs old female and I dont know what is happening to me. I know that pseudo means that they are non epileptic, now that means that I have had 2 neuros tell me I am like a fake, it hurts why dont they listen I would not do this to myself, why would I want to. I am so sick and tired of it all and I wish that it would all just go away. I wish that I had my old life back and my lisence. Its so not fair I am feeling so down today.
I am just wondering if there are anyother women out there that have this happen to them. I am told that pseudo seizures are more common in women.
I must go I am too upset. They are sending me to have a sleep deprived eeg and a temporal lobe mri.

Well thankyou all take care.
Sami Question will I ever get a full diagnosis.
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First Helper no fake
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replied May 6th, 2004
I had an intern tell me that it was just stress. In other words she was saying they were psuedo seizures. But she knew nothing about me my history or anything about the seizures I have had. She knew that I had a eeg and a ct 1 year before that showed clear. So based on that she was insuating that I was bringing it upon myself.

Just remember that when they don't have an answer they will always say that you are making it up. My friend went through the same thing years ago when she started having panic/anxiety attacks. Now see how prevalent panic/anxiety attacks are? They did not believe her then but now they do. I know that if my Dr. Says it is just stress and blows it off I will get another Dr. Until somebody that has an indepth education in seizures can find something.
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replied May 6th, 2004
I have the same personal feelings as you sami. My head feels funny all the time. The meds don't make me feel better and want I it to stop. Not to mention that the meds don't keep me seizure free.

Yes your stress can contribute to it. That is something you need to try and take a little on at a time. I am. So I know the seizures are not fully stress related because it happens when I haven't had enough sleep and try and have an active day, etc.

I know that having this is depressing and unforgiving. People from the outside truly don't understand unless they can somehow relate by personal means.

But keep your chin up...I think there are alot of us out there that are amongst the 60 percentile of unknown causes. Regard the percentage: whatever the actual percentage is...Different books say different numbers. However, all that I have been told and seen on the net, etc. Is around 60%. Just knowing that there is a high percent that is unknown is what keeps me going. That information came from many Dr.'s and university hospitals doing studies and research. So if there are those Dr.S out there that believe that there is unexplained causes then you should too, okay?

You are not alone. "f" them, it is your body your head. Do not try and change your what you are truly going through to appease the Dr.'s or to substantiate the prognostications the Dr.'s have concluded due to lack of knowledge or care.
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Users who thank Midnight for this post: TooDisabledToSin 

replied May 6th, 2004
Experienced User
Hello Midnight
How are you ?
Atleast this new neuro that I saw didnt tell me that I was a complete fake. He just said that some things were odd. Like how when I have those stare fits, I feel like I just cant stop staring, well thats what I told him it feels like for me anyway, but the ppl around me say I am blowing kisses and touching my body all over or running my thumb accross my fingers. My pupils are also huge when that happens. He also said it was weird how my body is reacting to the medication. I felt like saying hey listen here !**@! I dont take drugs never have so anything works well on me. 1 panadol takes a headache away for me. But I kept my mouth shut. Atleast he is doing investigations on me. I am still scared. I have began to feel traped in my sleep, nightmares out of control. Unrealistic dreams. Me feeling my self lay there in bed not being able to move trying to say something but no one hears me. Is this is fake then !**@!. Sorry for my swareing, I just cant handle it anymore. I read that partial epilepsy is a hard one to treat because it is very much to do with stress. And it doesnt respond well to medication.
Anyways thankyou for your replys.
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replied May 11th, 2004
Hi Sami
Sometimes when I get into a stare I have the same problem. And the kissing thing...My daughter told me I pucker up my lips sometimes when I have a petite mal.

What is really weird is that whenever I start really thinking that I can control this and that maybe it is just a mind over matter thing. I have some bouts that really let me know that this is real. Having you and the other ppl on this bb say simular things makes me feel like I am not alone and I am not crazy this is really happening to me and other ppl, the Dr.S just can't figure it out. But I won't quit, I am going to try and find out what it is and stop this. It is trying to consume my life and I am having to make major adjustments but I will get my life back one way or another.
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replied May 11th, 2004
Experienced User
Don't doubt yourself.... My doc I have now believes I have always had seizures even as a baby.... But they were so suttle noone noticed.
But, when I started to complain about not feeling right..... (i was 19 years old) no one would listen to me. I was told everything else under the sun but epilepsy. Carpul tunnel was one thing because I was dropping everything..... My seizures effect my left hand/arm the most.
The doc back then wouldn't listen at all about anything..... Until the night I had what the er doc said was the worst grand mal he heard about..... I had bit my tongue/cheek so bad they had to put stitches in it.
From that day on they labled me with epilepsy.....I have gone through many doc's...
I refuse to deal with a doc that won't listen to me or explain things to me so I can understand.
I also want a doc that realizes that "yes" I want to be seizure free but I also want a quality of life..... I don't want to spend all my time being doped up and sleepy.
And a doc who realizes that I know me better then he/she does.....And to take what i'm saying seriously.


As for doing something odd I have always, even as a kids picked at my lip, and I remember my mom would comment that I only did it, when I was deep in a thought.

Sometimes I can stop myself from staring off but, other times I know i'm doing it but I can't help it....
Jill
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replied May 11th, 2004
Experienced User
Mickyfan
Funny you say that thing about picking your lip.
I used to suck my bottom lip as a child.
Until the point that I would have a red rach on my bottom lip because I had irritated my skin so bad.
I would wake up in the morning with a new ulcer in my mouth, my mum would say that I was just not careful when I chewed my food. Or that I had to much vitamin c or something like that. I have always felt weird as a young child of feeling of fear, my other siblings have that also. When my sister listens to a certain song she cant move and she cant respond. Soon as the song is over she is fine.
My father did all the drugs under the sun, as I am getting older I am learning not very nice things about my mother and how my entire life may have well been a lie.
My mum told me that when I was about 2 yrs old or younger I would do this weird thing in my pram where I would go all stiff and make a weird noise, she just blew that off as an attention thing.
My neurologist told me that he believes that I have had this since I was a small child.
I would tell my doctors that I felt weird when I would go to sleep some nights, how my entire body would jolt so hard that I would wake up, or just before I would go to sleep, my body would jerk.
I am just very scared if they take me off my meds because I look at myself now and see how much better I am now and I remember how scarey it was back then for me to be having grand mal seizures 7 times a day.
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replied May 30th, 2004
I've just joined this forum because I found this topic through a google search for pseudo fits. I had grand mal seizures for 4 years, sometimes 5 times a day. They stopped immediately my partner walked out on me after 13 abusive years. That had seen me change from a confident woman to someone unable to say no to anything. I too had clear eegs and I now realise that these were pseudo seizures - although they were real enough to me, I nearly drowned once in the bath. I was treated with tegretol, which didn't work (why would it?).

However, I now find myself diagnosed bipolar and strangely, bipolar is treated with many of the same drugs as epilepsy. I wondered if there might be a link????

I got sick of the attitude to pseudo seizures from the epiletic community (this was 10 years ago). I still had fits, I still lost my driving licence and job (and so my home). I still couldn't do anything by myself and I absolutely was not faking anything. These are as real as any type of fit and as damaging to your life. But they do happen and should be acknowledge for what they are. I was treated to rudeness and silence from the british epilepsy association when I rang them for help and told them what was wrong. And I was treated like a faker by the medical profession. Thank god they stopped because no-one was taking me seriously at all. I was never offered a psychiatric referal.

I would be very interested to know if anyone has knowledge of chemical links between what may cause pseudo seizures and bipolar - which is afterall a chemical problem.

Thanks

kfp
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replied May 31st, 2004
Sami (and everyone),

never let anyone tell you that you're 'faking' anything! If any doctor ever tells you that, he/she should never have become a doctor. While I admittedly don't know a lot about pseudo-seizures, I do know that they are real. Just because they're not being caused by a misfiring of neurons doesn't mean you're faking anything. All it means is that a different type of treatment is required.

In general, if you're not happy with your neurologist for any reason, it is vital that you find another one. I saw a number of neurologists over the course of ten years, until I was finally diagnosed correctly with partial epilepsy at age 15 (i'm 25 now). For years they told me it was just complicated migraines and wanted to medicate me for that. They even misread my mri (i had a structural abnormality that no one noticed).

Anyway, I finally found an extremely knowledgeable epileptologist who actually cared about making me better. He didn't rush my appointments, he returned my calls, and he cared about my quality of life. I'm not saying I lived happily ever after (that's certainly not the case), but it made a huge difference. My advice to everyone with epilepsy out there is to find an epileptologist (not an ordinary neurologist). If possible, go to a large epilepsy center. Many neurologists--scarily enough--seem to know close to nothing about partial seizures.

Kfp: interestingly enough, my 23 year old brother was recently diagnosed with bipolar disorder (so maybe there is a genetic link of some sort). He's on depakote now (which i've taken a lot of) and I see him dealing with all the same side effects as i've had to deal with. It really sucks.

Sorry i'm new and have not yet learned to be concise!
Jen
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replied June 13th, 2004
Hello Group
I am glad to find others that feel frustrated as I do. I to don't want epi to be a diagnois. I would just like some type of answers re:pseudo. It's like a curse. The other site I post on is not very active to this subject. People are quick to judge.
If a epileptic has a spell, it's accepted as a medical illness, pseudo spells are looked at as a footloop!!
I was taken to the er in march. First of all, the ambulance took me. My family didn't know what the heck was going on. The paramedics came ,asked my husband a few ?? And hooked me up to I think a heart monitor. Quickly if could feel the unimportance of the situation. I could not speak,problem w/ vision.No control over my body,in and out of reality.
We arrived at the hospital. At this time I was becoming aware of things a bit. I was left in the hall unattened.Im not sure how long. I mumbled for my husband but they said not now.So I waited. When I got in a room(behind a curtain) they ran eeg. I was not having a spell but felt very weak during the test. Im not sure how much time pasted but a seizure began. My husband was in the room by now. I could hear some words clear but they didn't make since. My husband said they made him leave. He said he heard them say if I don't open my eyes ,they were going to stick a tube down my throat, now is this what you want? I was trying to open them but I could not on demand. I guess maybe she got fed up with me and left because when I was finally able to open my eyes ,she was long gone. They gave me a shot(i guess a relaxer) and said I could go home.At least you would of thought my husband would be offered a wheelchair to get me to our truck. My 13 yr old son had to help hold me up. I dont remember much else until the next day. They prescribed lexapro. Boy this was a bigggg slap in the face. Like we would do this to our life, our kids, our job,or independence. Maybe I should have registered as eeyore, he alway has a dark cloud over head (ha ha).
We gota keep strong!!!!!!! Sorry if im rambling on.

Glad to find ya,
no fake
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replied August 30th, 2004
Pseudo Fits
Hi my name is lynsey,i have just found out after 4month I have pseudo fits,i dont really understand what they supposed to be and to be honest I dont think the doctors know themselves what it is,i ave been in and out of hospital loads of times I have actually lost count.I have had eeg and ct scan,and also seen neurologist but tests come back ok,for the first 2 1/2 month my gp put me on antidepressions and betablockers which made the siezures worse than what they are I can have up to 20fits in one and I have been told I pass out and vomit while im out when im coming round my eyes flicker,i cannot remember what has happened.It is fraustrating for my family and myself as the doctor says I just have to deal with it myself I have a carer in for 2hrs a day to give my family a break. My family fought for the carer themselves as the doctors just dont care.I am having these seizures every day,i dont know when they gonna happen or how many im gonna have.

I would be very gratefull if anyone who has had the same symptoms or similar would reply.

Does any1 actually know what pseudo fits are?
Or does any1 no any medication to help or stop them?
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replied September 1st, 2004
Hi Everyone
The correct term for these seizures is called phsycogenic seizures.

The best way to be diagnosed whether you have this or true epilepsy is to go into an epilepsy lab for vidoe taping eeg. I have done this.

Alot can be gained into the insight of your brain. I went to vanderbilt in 1998 for this. I have refractory seizures. They wanted to see if they were true epileptic seizures or phsycogenic seizures.

I to at first remember being freaked out that they must think I was crazy and 'possibly' making myself have them phsycologically. Confused Now after having it all done and my results I kind of wish they had been phsycological. Maybe I could have become seizure free with a phsyhiatric help and the right meds. Sad

i was diagnosed with temporal lobe seizures(which we knew, and knew I had scaring)occipital part of my brain damaged too types. Back then I was having 250 a month. Was very sick. Was schedualed for brain surgery that week. Opted out because the occipital can not be operated on at all. Only the temporal lobe. What was the use! Rolling Eyes I also have 3 type of seizures. Grand mal, partial complex and another type. Can never remember them all.

Phsycogenic seizures affect women more than men.
There are different catagories also. There are people who literally fake them and is why you guys are getting a bad rap from the medical community. It is a form of mental illness. Real like any illness. But people still like to stigmatize. Pathetic really. The people faking them do it purely for attention. Do alot of 'odd' behaviors to get a doctor to believe they really have something wrong. Why on gods green earth they would choose this is sooooooo beyond me. I wouldn't wish this on anyone.

Migraines can cause them. Certainly stress. They are from the subconcious. Meaning you cannot possibly 'fake' them. If any of you can get into a video lab to have documentation of your type seizures I would be running. Then you can carry the diagnosis with you and tell the idiots to cram it where the sun doesn't shine. Wink

i have 21 years of documentation. Have the vns implant also. I suffer from migraines too. Had to go to the emergency room. That doctor tried to tell me I was not epileptic! Shocked well I politely pulled my shirt off my chest and asked him what he thought of that. The scar and battery. He didn't know what it was! I said well for your info I am epileptic. Have been diagnosed at vanderbilt lab. And this defice onlygoes to patients suffering from refractory seizures. That it wasn't implanted just because it could be. I also told him to call my neuro seeing he knew so much of my history. Not! That he was only an emergency room physician and didn't specialize in anything. That 'i' had more education on it than he ever would unless he went back to school. The nurse thought it was funny. He was just a jerk. Never has a doctor spoken to me with such disrespect. And never have I ever put one in his place such as him.

Stand up for yourself and back them down. Educate yourself and then some. I have been educationg myself for 22 years and still learn new things. Empower yourself against morons like that. Don't be afraid. They are only people. Not god himself. Many like to think they are. Rolling Eyes give me respect and you have mine is how I look at it. Doctor or no doctor.

This post has me really angry. I have a friend who suffers from these too. Her life is upside down just as mine is. Seizures are seizures. Plain and simple. They destroy peoples lives!

Good luck to all of you. And don't let this beat you down or make you 'think' you are crazy. Get to a lab. Then you can get the appropriate meds you need for your type of seizures. Counsling to probably. But that never hurts anyone. I have had plenty myself to deal with my disability.
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replied August 25th, 2008
pseudoseizures
Hi everyone, My grand daughter was told by her doctor that she has pseudo seizures, she jerks, shakes and ever speaks in a different language. Would like to know if anyone has had this happen to them. It is so bad at times she has to have someone take her home from work. They say it is all caused by stress. So if anyone could please tell me if hey have had the speaking in a different language happen to them.
Thanks so much. God bless all of you.
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replied September 15th, 2008
frustated with epilepsy
i am 49yr old female diagnosed with left temporal lobe epilepsy (intractabe type. hx of migraines. my primary became frustrated and would ask me why am is having syncope at work. i am an rn not currently working. now am seeing . specialist in epilepsy. i have experienced various types of seizures headace afterwards weak and dizzy. still think this is not happening and i am just nuts. and you are right no one really understands what it is like to experience these events, unless they are experiencing them personally. scheduled for a sleep video am considered a good candidate for left temporal lobe resection. can anyone respond to any of this. also am currently on keppra, lamictal and trileptal. any comments on info in this mumble mess.
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replied December 3rd, 2008
pseudo seizures
i am 20 years old and over the past 2 months i have been collapsing and having seizures, i have already been diagnosed with epilepsy, but they dont think that these are anything to do with that!
i am waiting to see a neurologist, but some dr's and nurses are saying it is psychological or put on, even my family have thought it!
when i found out i had epliepsy i was devastated, because i lost my licence, which really upset me, i still have a problem with my epilepsy, even though it is under control, and could drive, but due to these seizures ive had to surrender my licence again. why the hell would i want to do something that would mean me having to give up something that means so much to me?
i have had a problem with depression over the passed few years, due to a few things happening and they want to blame it on that! i did selfharm, NOT for attention! i hate anyone knowing. the only reason i can write it on here is because you all dont know me! but because of my history, they are just saying it is put on, im even beginning to question myself and feel as though im going mad! i sometimes feel something before it happens, so i keep thinking to myself that i should be able to stop them, when in reality i cant!
ive collapsed in the street on my own, in the middle of town with my mum, when ive been out with my friends, multiple times in hospital, but they are rarely full blown seizures!
i just dont know what to think, im just sick of people judging me without knowing the truth! okay so ive got a bad history, but i cant change that!
last time i was in hospital they didnt even do a ct scan, or mri, nothing!
just a million and one blood tests, then decided that it was psychological or put on!
i dont know what to do, how to get people to understand, would really appreciate some advice! i really feel for everyone who is in a similar situation!
so much frustration!
thanks!
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replied January 29th, 2009
Pseudo Fits
I was admitted to hospital last night and had a numerous set of fits - i was extremely scared - but was then informed (after 4 hours) that they have done all the testing and there is nothing wrong with me - and that I was having pseudo fits. Its a horrible feeling to be told that you are having mental/psychological problems. But to be honest, now that I know, I can start the various things to recover. Don't feel upset if you are told this, just admitt you need help, an outlet for your depression and stress...heres to recovery!
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replied February 9th, 2009
psuedo fits.
hiya, my 15 year old daughter has just been diagnosed with psuedo fits after five months. Her school head teacher thinks that she is faking this and so do some of the children at her school and she is getting bullied because of this. She sometimes does this upto ten times a day. When these happen she is unconcious for about five minutes and her eyes flicker. She just falls straight to the floor and has injured her head a couple of times by doing this and has also done this going up the stairs (which she was told would never happen). She has also been experienceing severe lower back pain since these have been happening. Because of this she has been feeling very down lately and it has been really upsetting her.
I was woundering if there were any treatments for this kind of thing and if anyone else has or knows someone who has had fits like these. Thankyou
x
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replied February 9th, 2009
hi!
i got told i was having pseudo seizures, which im not sure about, because i do have epilepsy!
from what i have read, the best treatment for pseudo seizures is a psychologist!
these seizures arent fake, they are just as debilitating as any type of fit!
people have told me that i was faking my seizures and i too was having a lot of them and have injured myself from them, but for me having the seizures has restricted my life so much! i cant drive, i cant play football as often as i used to, i cant go the gym, i cant take the dogs for walks, and so on! why would anybody want to do that to themselves!?!
the same with your daughter, if she is getting bullied because of it, then surely she wants them to stop!
but pseudo seizures are psychological, they are not voluntary, you dont choose to do them! it is apparently your subconcious doing this, if you are faced with a situation you are panicked by, become stressed, things like that! it is basically your subconcious' way of dealing with things!
i had a fit whilst riding my bike, which i would never want to happen! similar to the stair incident with your daughter!
only one dr out of so many has believed that they were not pseudo, so try going to another dr!
was she told this in hospital? because er dr's arent specialists, your best bet is to see a neurologist! if that turns out to be clear, then try seeing a neurologist!
hope this has helped! take care! x
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replied February 18th, 2009
psuedo fits
hiya, thanx redmuppet. She is currently seeing a neurologist at the hospital and she also seems to think that they are psuedo fits. They havnt yet done the all of the medical tests, she is still waiting for a sleep deprivation test. She has been put on a waiting list for the cairms group. She says that there isnt anything bothering her apart from the fits so i dont really see what it could be. and as i said before the drs said that she couldnt hurt herslef whilst doing this and yet she still manages to. I think that psuedo fits are just what drs are calling them as they dont have a clue what it actually is!
x
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replied February 18th, 2009
psuedo fits
hiya, thanx redmuppet. She is currently seeing a neurologist at the hospital and she also seems to think that they are psuedo fits. They havnt yet done the all of the medical tests, she is still waiting for a sleep deprivation test. She has been put on a waiting list for the cairms group. She says that there isnt anything bothering her apart from the fits so i dont really see what it could be. and as i said before the drs said that she couldnt hurt herslef whilst doing this and yet she still manages to. I think that psuedo fits are just what drs are calling them as they dont have a clue what it actually is!
x
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