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starburst70

Pseudo Seizures

Hi there,

Im hoping someone out there can help me out.

I have just returned from the A & E Department of my local Hospital after being sent their by my GP due to my having 2-3 seizures a day and having a real bad headache down the left side of my head and weakness on my right side.

After being treated as what can only be described as a slab of meat I was told that I was having pseudo seizures to cover up my stress that I was under and that the medication I was on was enough to knock out a horse and that I was using these seizures to get out of situations.

I did try to assure the Doctor that I am not stressed and am just a normal 35 year old mother of two wonderful kids, who is happily married and works full time but all he said was that he was trying to give me the chance to "admit" that I knew I was doing this in order for him to help me further. When I assured him that I dont remember going into seizure and that this had been the case for 12 years he then said he couldnt help and that I would have to wait 7-8 weeks for a so called urgent referral. To say I feel totally disheartened and extremely upset would be an understatement and although I am waiting to see my GP on Tuesday and I dont know what to do now.

Any advice anyone can give would be really gratefully received.

Please help as I want my life back.

Star
xx

Comments

Re: Pseudo Seizures

hey sterbu i no your pain and confusing because i been going thru it every since 2000 until now they just told me the name for it or what they is called i been on the same meds for that long it never stop my csezures at all the only thing it gave me was memory loss but they have chaged my meds now after they told me i wasn't having seizures

Re: Pseudo Seizures

Hi Star, I'm sorry to here that your going through this i really understand. I to have pseudo seizures. i'm 29 and a mother of three and have had them for 4 years now. I to was sent home from the hospital when this first started occuring told that i was faking it and i just needed to eat more potassium to keep my body from (cramping) up like it was. Finally a good Dr. did the right testing and asked if I had ever been sexually or phically abused when I said yes she told me that I hadn't delt with it and she was right. Although I still have these episodes at times like when I get to hot or cold, when I'm really scared or evn when I'm just having an emotionally  hard time it has helped to get the right help that I needed it has gone from 4to15 times a day to MAYBE once a month. I really wish you the best sweetheart and I hope you can find a good Dr. that can help you. Just remeber to keep trying and not to let this consume your life like I did because it's to short my prayers are with you.

Re: Pseudo Seizures

Hi Starr,

I just went thru a 10 day stay at an Epilepsy Care Center, my second one in ten years. Roughly 8 years ago, I started having symptoms of numbness down my right side, my pointer finger and middle finger curling in, tremors in my back, my right eye closing on its own and having a very hard time talking. I thought it was seizures, break thru or other wize. My doctor at the time was coming back with no help what so ever. So 2 years ago I fired her, had my primary physician take care of me, diagnosed myself with his help with anxiety because of problems being in large groups, movies, things I used to be able to do when I was on tegretol but now that I was put on zonegran couldn't even walk out of my house.

Anyway, the 10 day stay with the VEEG came up with some very conclusive results, and i had a great team to work with. I have RTL GTC and type of migraine thing not related to my seizures. The other symptoms I have been having are non epileptic events or pseudo seizures stemming from anxiety and possibly PTSD.

So, don't dismiss the psuedo seizure part quiet yet, I will be upping my Effexor XR, and making an appt tomorrow to start seeing a psychologist regarding my anxiety and where this is stemming from. Because my non-epileptic events were actually worse than my GTC's. I quit working, quit socializing, dropped out of college, and quit all the things I love, and became a prisoner in my own home. That is how bad it got. Eight years is a long time to deal with it, don't weight as long as I did to find a doctor that will treat you as a whole.

Take care

Lorelama MN
Well behaved women rarely make history.

Re: Pseudo Seizures

I am so grateful to have found this site. After a very long frustrating year, feeling like I am going out of my mind, finding this site has been a godsend. I am wondering if anyone knows of an ethical, supportive, yet passionate Dr. that truely wants to help me in the San Diego, Ca. area, PLEASE respond to this post. I am the sole provider for my family, and am getting to the point of not being able to work and take care of them. I look forward to your responses and suggestions. I am also wondering what medications have actually worked for some of the people that posted earlier.... Thanks for all your help!

 

Re: Pseudo Seizures

Hi everyone!  My 17 year old daughter was just diagnosed with pseudoseizures.  On average, she has approximately 2 or 3 seizures per day.  She could be at home watching a movie, out with friends having a great time, sleeping or just relaxing a home.  There is no particular time in which I can narrow down her seizures.  She had a normal MRI, CT scan, EEG, 24 EEG as well as video monitoring at an epilepsy center.  She was prescribed anti-seizural medications and recently taken off of them.

We are awaiting an appointment with a neuropsychologist.   However, this diagnosis is very difficult to accept.  Of course, my daughter cannot drive, be alone for long periods of time, go on any amusements, among many other activities. 

My daughter is in 11th grade and has missed more than six weeks of school.  Hospital neurologist advised me to send my daughter back to school and I have done so.  However, I am getting calls mosts days  from the school nurse.  Today, after three separate seizures, I picked-up my daughter from school. 

Any insight or advice would be greatly appreciated.  This has been a nightmare for not only my daughter, but our family!  (Although, please don't misunderstand me -- we are EXTREMELY supportive, compassionate, etc). 

We are extremely desperate for help for my daughter!  She just wants to be what she calls "normal" again.   

 

 

Re: Pseudo Seizures

There is no such thing as pseudoseizures. These are real seizures. It is another case of blame the victim. I was told I had pseudo seizures for years because I have PTSD. They said I was doing it to get out of doing things. I told them wrong diagnosis. That's Malingering.

These are real seizures and cause real damage. I have severe brain damage because of abuse and malpractice and having the nurses tell the other patients to "just step over her" as they left me lying in partial status on the floor in front of the nurses station.

The cocktail of meds is most likely aggravating the seizures or even causing them. Stress will trigger epileptic seizures in epileptics because adrenilin is a cholinergic agonist in the down stream signal cascade.

You need a neurologist. Not a Psycho Neurologist. Not a psychiatrist. Those people almost killed me. I am brain damaged and physically crippled from all of the injuries from my "fake seizures."

Btw, PNEW is not feigning seizures for secondary gain. That is malngering. It is also not a Facticious Disorder where someone says they have symptoms for some sort of secondary gain. It is a real medical condition requiring medical attention.

I am incapacitated from the mistreatment and abuse I received. Find new doctors and get checked out. Your seizures sound a lot like mine. It wasn't until it got so bad that I ended up with a dent in the middle of my forehead from sever convulsions that I finally got a diagnosis of epilepsy. Now I literally can't see straight. I have trouble touching my finger to my nose. I have trouble using my mouse. I have trouble reading. I have trouble writing. The list goes on.

Please do not let this happend to you. "Pseudoseizures" or PNES are temporal lobe seizures/limbic system seizues with hippocampal involvement for the most part. The newer research is confirming this.

Please get yourself new doctors. No one should have to suffer this abuse. My health and my life are in ruins because of this and I have had epilepsy since infancy that was never diagnosed for a variety of reasons ranging from abusive parents to incompetent doctors.

Baruch Hashem. Hoshia na.

Devorah Zealot Soodak www.psychout.typepad.com/ the zealot needs help!

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Re: Pseudo Seizures

Hello Star~Wow this sounds to familar as to my case.Here goes...I was in car accident in '04,at the site I started with seizures the paramedics said.At hospital they said a slight concusion and sent me home.I have never had a seizure before.Went to 4 neuros and they said not epilespy.Had an MRI,EEG,CT scan,VEEG etc.all came back normal.Dx~pseudo seizures.Saw epileptologist also.Was told to see a psychiatrist,he says not psychiatric,saw psychologist he says not psychological.If you have pseudo seizures any anti epileptic med can bring on more seizures.Neuro will not prescribe but psych is but can only give up to a limit on meds then the neuro has to take over and he will not.Psych has me on Lamictal,Klonopin and Effexor.These meds do seem to be working some,maybe with increase they will help more.Pseudo seizures use to mean a fake seizure...seizures are real.Also told that it is an underlying problem that is coming out as a seizure and once that is talked about the seizures will go away.I have never had anything in my past to cause seizures.Well the neuro is so wrong,the meds are helping,the psychologist and psychiatrist say these are not pseudo seizures.Talk about being confused.This has been going on for 4yrs now.I cannot drive,swim alone,take a bath unless someone is home,no climbimg ladder,no riding lawn mower.....OK so tell me what I can do?I feel as though I have done everything the neuro said to do so now it is back in his lap.I will continue to see psych for the meds.Neuro says well,I have to watch you for Parkinsons...Ummm what does that have to do with seizures?He had no answer.I wish you the very best of luck,hun.Try not to be hard on yourself and get other opinions.Sorry this is so long but I thought you might like to hear it from someone that has been in your shoes.One good thing to do is to keep a log book...put...date,time it happened,how you felt before and after,aura also.May God bless you through this rough time in your life.Wish you only the best

*Peace I leave with you; my peace I give to you.I do not give to you as the world gives.Do not let your hearts be troubled,and do not let them be afraid.* ~John 14:27

Re: Pseudo Seizures

i lyke how u quote that it really heip i been fighting this thing to by myself having 3 kids. sometimes i don't think i can go on or live a normal life i have to go back and forth to the physc. cause when im stressed they come on bad. they tell me not to stress how can't i and i can't hold down a job. o and on top of that my dr. was out so i seen another dr he told me i wasn't having them about 2 weeks later he gets in touch with me to tell me i need an MRI so i go get that done came back wit a cyst on my brain these the same dr told me i wasn't have seizures well he said sorry cause my eeg and mri showed differnt

Re: Pseudo Seizures

Hi Star,

I know exactly how frustrated you must be feeling. Having had epilepsy for 21 years, i was generally well-controlled for about 10 years and then began having lots of seizures. My neuro started medication dosage adjustments and then the fun really started, introducing new meds, new side-effects and different combos of meds. I was getting on a greater and greater amount of meds, but was still having seizures and that's when my neuro brought up the possibility of pseudo-seizures.
I want to stress that from my understanding (the way it was explained to me by my neuro) pseudo-seizures are still seizures, they just do not have a medical trigger, but have a psychological trigger. In my case it was a whole lot of childhood family drama stuff that i had not yet dealt with. Pseudo-seizures have certain similarities to "real" seizures, but there are also differences, such as increasing frequency, not responding to medication despite increases and often can be very long in duration. Sorry i can't remember more detail about it, but that was about 5 years ago.
The initial manifestation will often appear the same and we don't remember the onset, they may not be medically induced but most of us would still not choose to do this to ourselves.
However, to make matters more difficult, i was also continuing to have "real" seizures triggered by my identified triggers, such as flashing lights, chemical smells, etc. Therefore, we had to keep playing with meds to try to get those under control while i had to deal with all the family stuff.
There is an end in sight, though! I am now relatively well-controlled with approximately 1 seizure each 2-3 months, and for the past 2 years, they have all had identifiable triggers. Meds have been stable for about that long, as well.
I don't know if this will help you and i'm not saying you have any unresolved stuff that's causing this. But I know i felt like i was the only one who had ever been "accused" of pseudo-seizures so i hope it helps to know that you're not alone. I feel also that pseudo-seizures are presented by some as people faking it, when in fact that's not the case.

Good luck, and just get through one day at a time!!!

Joey

Re: Re: Pseudo Seizures

Hiya Joey,

Well Ive got to say that it is a relief that I am not the only one out here that feels as if I have been accused of having or faking "pseudo seizures".

I came out of the hospital feeling like a total fraud and was so hurt when the Doc said to me that he was giving me "my chance" to "admit" that these were'nt true seizures and that I was having them "to escape situations I wasnt happy in or had got myself into". He even told the on call Neurologist that they were pseudo seizures and that my urgent referral should be downgraded to a normal one so instead of waiting 2 weeks I am now looking at an 8 week wait and then went onto say that he couldnt understand why I was getting so upset as he was only making a suggestion and that he could see how upset I was getting as the monitors I was hooked up to showed an increase in my blood pressure, heart rate and respiratory rate and was I certain there was nothing I wanted to say about these.

My hubby was absolutely livid and it did make me think about coming off meds to see what would happen or if the seizures improved as I do worry that the high dose meds that I am on (2000mg epilim and 400mg phenytoin) is maybe causing the seizures to occur more frequently as I have been told that too much meds can be as bad as not enough.

But it does make me wonder how these Docs have managed to get qualified as their bedside manner is appalling in some cases and to even plant the idea in my head that I had other issues that needing dealing with and that I was basically wasting their time made me feel so low - Im still struggling to get my thinking straight as to what action to take but think I will just wait until I see my Doc on Tuesday morning. But I just cant seem to shake how low I feel at the moment and that it isnt fair on my hubby and kids and Im either snapping their heads of, asleep, having seizures or crying at the drop of a hat - I just dont feel like me anymore if that makes sense.

Dont get me wrong Joey, I have had issues in the past and only lost my dad in August of last year after a long illness but am genuinely frightened to go to the ER/A&E Dept or to a consultant incase the same thing happens again as I know my husband wont deal with it as well next time.

I appreciate what you are saying and it was such a big relief to know that someone else had been through it but any advice on how I go from here would be greatly appreciated.

Speak soon and take care

Star

Re: Pseudo Seizures

Hi Star,

Geez - you sure ran into a "jerk" of a doctor !! I am so sorry you were made to feel that way. Can you tell us what tests were run, and how this idiot came about this diagnosis? Maybe after knowing what has already been done, we can make some suggestions on further exploring what is really going on.

There are "pseudo seizures", but they are in no way "purposeful acts" done to get out of dealing with situations. You should never have been treated that way by that so-called-doctor, and I can't imagine how low that made you feel.

i am glad you posted on this forum. There are many wonderful and caring folks here, who are always willing to reach out an lend a supportive arm.
((( hugs ))),
Barbie

***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Re: Pseudo Seizures

Hiya Barbie,

Many thanks for the reply. I will try and provide as much information as I can.

The most upsetting thing about all of this is that NO tests were run whilst I was in the hospital. I was kept in the resus room and bloods were checked but no eeg or mri scan were carried out. I was basically left in a bed with my husband by my side for over 4 hours with an attending/sho asking us the same questions over and over again to see if we gave the same answers and once she could get no further she then got the doctor who said about the pseudo seizures and that I had unresolved issues that were causing them and that although I was saying I did not have any, he then went on to say that they could be that deep in my self concious that I wasnt aware of them myself.

On top of that, after telling them that when I was first diagnosed an arachnoid cyst was found the attending/sho said it was just a little cyst (she hasnt seen the scan results from previous as this was different from my usual hospital) although I had been told that if the cyst burst it could cause severe paralysis and if I was extremely unlucky, death due to the fact that it was in the middle layer of the brain and couldnt be operated on as it would prove too risky, I was made to feel like I was making a whole big issue out of it. I am now due to see my usual Doc tomorrow (Tuesday) to discuss all of this with her and to see if my meds can be changed as the ones I am on currently are making me feel too drowsy and I have gained at least 30lb since being on them on top of the fact that they are not controlling my fits/seizures.

Any advice would be so appreciated Barbie, or anyone for the matter.

(((Hugs))) and and big thank you,

Star

Re: Re: Re: Pseudo Seizures

Hi Star,

I am so sorry I missed this and did not respond earlier. I am glad you went to your usual doc, and hope you got some answers.

My suggestion would be that you see an epileptologist (neuro specializing in epilepsy) to get your seizures treated. I would also suggest that you avoid this particular hospital in the future if at all possible. if not possible, I would see if you can have your doctor(s) write out a treatment plan and have it on hand at the hospital if possible. If you have to go to that hospital again, and are treated this way, have someone contact your doctor(s), and let them know what is going on. They should then be able to contact the ER and straighten things out. You should never be treated this way, for any reason. An arachnoid cyst is not just "a little cyst", it requires monitoring and treatment when problems arise.

you might also consider writing a letter the the medical director of the hospital, with doctor's records to back up your diagnosis. Sounds like they have a major problem in their ER department, and it needs to be fixed immediately.

((( hugs ))),
Barbie

***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Pseudo Seizures

The worst thing to be without........hope

WOW, I think it's time you found yourself another doctor, how can anyone
be so heartless? I have been on several different med's all with different side effects, keep going the extra mile, educate yourself and the med's you are on, good luck

Re: Pseudo Seizures

Hi Star, I am new here and wondering about this topic as well. My 13 yr old daughter started having seizures everyday in school last year, she was placed on medical home-bound schooling for the first semester. She had tests (mri, ct scan, EEG, VEEG), they told us that she had some abnormality in the EEG and increase in white matter on the mri. They first diagnosed her with Temporal Epilepsy, since we have a family history of Epilepsy. The medications were not working, they tried most of them. She was being taken by ambulance to the hospital at least 3 or 4 times a week. Her seizures were different than the grandmal type my brother has, she would kick her legs and make a clawing motion with her hands (sometimes clawing me, her dad, the floor, wall or whatever was close), sometimes she drewls or kind of snorts, she would have 2 or 3 episodes at a time and would continue for over 10 minutes total.
The dr stopped all medication and she went back to school for the second semester. She had at least one every month, but the last one was in May. The dr. told us after seeing a seizure on video, that they were not epileptic seizures they were PNES. We thought it was because she has alot of difficulty in school and therefore doesn't like school.
But this year, she has done really well and has even become alot more confident and independent. She's been fine since the end of May, now all of a sudden she has started having them again. They called this morning from school that she was seizing, by the time I got there she had 3 lasting a total of 14 minutes. So now I am confused, I don't know if maybe it has to do with her body changing. She is 13 and we have had signs that she is going to start menstrating, and the symptoms and signs have been this way since last summer. The dr told me she was getting ready to start when she had a urine test done last summer, but she still hasn't so I don't know if this could be related or not.
It is very confusing and hard to know where to turn with this, and how to approach her about it. I don't want her to think we think she is faking it or can control it, I just don't really know how to help her deal with it.
Hope you have gotten some answers, would love to know if you have learned anything new with your situation.
Kim

Re: Pseudo Seizures

Hi there, i have been diagnosed with non epi sz, though i think and so do a lot of drs and different people that this diagnosis is wrong. Even if the sz are not epileptic they are indeed REAL sz and there is pretty much no difference between epileptic and non epileptic sz apart from the way they are supposed to be treated...you cannot fake a seizure like this. I was wondering about hormones aswell at the present time ...i am 19 and things seem to be out of balance at the moment and i believ that hormones do play an important part in the sz.
However if you are not satusfied with the drs get a referal to another one, especially an epileptoligist, i heard they are the best to go to, especailly if the old test results came out abnormal
well good luck, if you need any more help find me on my blog.  :o)
(beaniebabs)
x x x

Re: Pseudo Seizures

Hi star :)

Let me give you some information on pseudoseizures.
First off they are properly called Psychogenic Seizures as the cause is psychological as opposed to neurological.
Those wityh PS suffer the same seizure trauma but, physiologically, the brain isn't affected.

Here are some sights:
http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/psychogenic+seizures
http://www.epilepsyfoundation.org/answerplace/Medical/seizures/types/non...

I hope that helps.. (*for more info just put 'psychogenic seizures' on your search engine)
& best wishes
~sol

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