Pseudo seizures for 2 years and getting worse

flinnigan

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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.

These "silly" frustrations send me into major emotional breakdowns and seizures too. Computer and work stress were my worst triggers. My worst day ever was 6 seizures at work. I was switching between the computer and clients and had severl in front of them. I was already on Depekote at the time. I no longer work and my computer time is mostly for pleasure. I haven't had a seizure at the computer since. Still other trivial things set me off. This isn't advice but I wanted you to know someone else know how you feel.
 

Ruth

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Hi SJLCOPE, welcome to the forum.

I read at the bottom of your comment that nothing puts you in a relaxation mode. Every one is different. It does not have to be a female voice, it can be a male relaxing voice. Men relax too. I recommend you find what works for you.
 
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Update 4/23/09 No seizures since Good Friday

Thanks everyone for the feedback and support. I started scanning other threads in other forums and realized with disappointment that I would like to answer them all with some kind of comment, but lack of time makes it impossible.

So those of you who have replied to me, I give you a sincere double thanks, as there are so many people out there hurting...makes me wish I had some generic wisdom to pass on that would make everyone happy, but I suppose that only happened on LEave it ti Beaver & Father Knows Best...

Anyhow, the good news is no seizures for about 10 days now. It might be the resumption of Prozac kicking in, the addition of chlorazepate, maybe te new phsychologist I am seing, or just lucky not to hit too much stress from work. Whatever it is, I hope it continues, as the longer the time interval between seizures goes, the better I feel about it.

There is some sad news that migt be related - I had to put my dog to sleep on good Friday - heat failure - it WAS the right time, but it still hurts as to me she was not a dog but a true friend for 12 years. It may be that the grief I feel from this loss is just plain trumping anxiety...but no point in trying to analyze it.

For the record, is the pain I feel from losing the dog worth it ? Yes! It is worth it. The dog brought me love which can be hard to come by these days.

I am not quite ready to get another dog yet, but someday I will.

The new psych basically confirmed I have both panic attacks and PNES and that they can be learned to be controlled, but we have not gotten to "how" yet, or if we did, I guess I just didn't get it.

So for me, it is good news, because I am beginning to believe that there may be an end to this madness. For awhile I thought I might be actually on the verge of some kind of major breakdown, and felt powerless to stop it.

So the only thing I think I can offer all of you right now is to remember to keep the word "maybe" (as in "hope") in your vocabulary...as in "maybe I can get better..." "...maybe I can get just a little better at least...", or "...maybe I can find some combination of activities, thought patterns, pursuits to give me some sense of joy and purpose..."...just keep open the possibility in your mind that maybe tomorrow can e a little bit better than today, and that somehw this trend will continue and become cumulative.

Good luck all.

Steve
 

Ruth

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Hi, I am truly sorry your dog passed on. They are true friends. When I had dogs, and they died, I grieved. That is a normal process.

Have you had a Video EEG? One person in the forum did and it turned out he had epilepsy. Give it a try. Pseudo seizures are also known in Europe as NEAD. Non Epiletic Attack Disorder. Sometimes I have had them, even though I have epilepsy. The fact that it is called an Attack Disorder tells me that it is not all in your mind. In Europe, it is diagnosed by a Video EEG.

You control them the same way you do epilepsy. Stress, caffeine and anxiety are all triggers. Exercize, checking to see if you are photosenstive to computers and television and other things that are related to epilepsy are also the same thing as NEAD. Depression is also a trigger. Look at the bright side. You may not have to take AED's.
 

matchu

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I was just released and was told my seizures are non epileptic. It is an odd diagnosis, but indeed not taking epileptic drugs is a good thing in my opinion. I know the seizures happen and they are really happening. I am also always on edge and have anxiety most of the time. I found the only thing I can relax on and be coherent is marijuana. I was told this is a good relaxation medication at home, but out in public it can cause more anxiety. I was only monitored for 3 days, but was told someone actually spent 21 days in the monitoring unit. Bless there heart, that must have been horrible. I live in Houston, Texas home of the Texas Medical Center and was told it is one of the few epilepsy monitoring units in the country. The largest to boot, hmm had no idea that the treatment is just as rare as the research.

My fear is that I have made lots of friends here, found lots of help and wonder if I am still welcomed as a non-epileptic?

I have deppression.. trigger!, anxiety trigger!, I am up to try any solution to get better, and am very happy to be home and not have my head attached to a human leash.
 

Ruth

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Hi matchu,

Anxiety and stress are a trigger for the seizures. Find music and other things that relax you. Look for the triggers in epilepsy and they are the same. I agree, 21 days, they must have been determined to find epilepsy.

Would you please tell me why someone would rather have epilepsy? NEAD is a Non Epileptic Attack Disorder. The brain is complicated. It can have so many things that go wrong. I would rather have NEAD completely and be off of medicines. It would have made my life easier. I have both epilepsy and some NEAD attacks. My NEAD attacks were diagnosed in the hospital. She said that I did not have epilepsy at all. I fired her.

I have absence, complex partial, simple partial, tonic clonic, Status Epilepsy and NEAD. I am thankful I do not have to have brain surgery or have a tumor. I treat all of my Attack Disorders the same. Epilepsy is an attack disorder as well as NEAD. I try to relax, eat right.
 

matchu

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I have no idea why someone would want to have epilepsy or psuedo seizures for that matter. I hope I did not sound like I was meaning that. I feel really good not taking the seizure meds, I have not experienced any jerks of the body as much as they seem to have been caused my the medication. My road to recovery is still ahead of me, it is just going to take a different route. It is comforting knowing a little bit more about what is going on with me. I am interested in getting the results of the nuerophyc testing.

The neuro I see that placed me in the hospital did not know of PNES when he was saying my eeg did not show any seizure activity. I was puzzled by this, but the Doctor in the hospital was aware of this and talked about it, and was sort of dancing around it thinking I might be upset that she was telling me it was not epileptic. I told her I don't want a disorder or care which it is, I just want to get better.
 

Ruth

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I agree with you. Having any disorder of the brain is not good. The brain controls our body. What medicine are you on? I know some NEAD people are on medicine. What is neurophyc testing?

You would be surprised at how many people do get upset when they are told they have NEAD. They believe that the doctors have made a wrong diagnosis. Having seizures, the first thing people think of is epilepsy. Most people do not know that it can be something else.

I believe that NEAD is a more accurate term than psuedo seizures. You can use the term that you feel comfortable with. There is also the term non epileptic seizures.
 

matchu

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I am on lexapro and serquel. My release paperwork said I was admitted for seizures and released as Non-epileptic seizures. I really am not comfortable with psuedo seizures term either, as it sounds very ackward and I have actually not contacted some relatives as I really don't want to go through all the explaining just quite yet, as I really don't have any answers. It was not upsetting to hear, but it was not a fix per say, and not much else was said about treatment. I assume this is because it is not the epitoligist thing.

the testing was something to build some physcological profile, the test was 5 hours long or so and involved the doctor telling me stories and me having to repeat them at different times and make shapes from blocks, repeat a list of words at different times, listing words that begin with letter x, a, b, c, d, etc. It was interesting on the words he stopped me on were all emotions, I could feel this guy inside my head! I was shown pictures for 10 seconds then had to draw them.. without seeing them. all basic stuff but it was so extremely difficult. They test what part of the brain might have memory damage or something. OH Then there is a 300 yes and no questionaire to fill out about your personality. I was frustrated because I could not remember what I was just told! I also learned some things about myself and was open to the testing as it was really interesting, but exhausting the same.
 
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Ruth

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Hi Matchu,

Five hour long test. That is exhausting, I am glad you were open to the testing. Wow, 300 questions to fill out about your personality. I appreciate you telling me what you went through. You went through a lot.
 

matchu

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I tell you I really thought I did, but I read Brain has had a rough time and feel silly about my problems at the moment, and just hoping she is feeling less pain and getting rest.

doing my research and found this tidbit:
The currently accepted treatment for NEAD is psychological therapy. This is offered at a number of centres around the country by specialist psychotherapists, clinical psychologists, psychiatrists and clinical neuropsychologists. This kind of therapy aims to help you to understand the reasons for your symptoms, and may teach you specific techniques to help you control your attacks, understand your ways of coping with stressful events and view past events in a different way. Many people find that their seizures stop or reduce with therapy, or that they are able to live with them more easily. This can be a long process and it is likely to be weeks or months before your attacks improve. You may referred for psychological treatment by your neurologist or GP

this is from Scottland
 
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Dear Feast (sorry to not direct this msg to you on my original post)

Yes, I had EEG and Video monitoring in a hospital and they concluded in 2 days that I DO NOT have epilepsy - but Panic Attacks and PNES.

I walk 4 miles a day, jog on weekends, see a therapist, but still have anxiety and stress problems. No complaints, though, as I cling to the belief that this will one day be brought under control.
 
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Ruth

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Hi, yes one day it will be brought under control as they do more research.

Matchu, no matter what side effects you have from your medicines, you must continue taking them. Do not stop them without your doctor's okay. That goes for my medicines too.
 

No Shame

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okay now what

Hi Matchu,

You seem to be in the same boat as me. I wonder if your symptoms are constant...? I don't have EP, and was told to check into lyme's, get treatment for anxiety, and i may have a dissociative disorder, or post-concussion disorder. Guess what's true--not the last 2. And i have really been a head case over this...accepting what the professionals have told me. But, there are many symptoms which can be anxiety or depression that have underlying causes that are medical. What helped me was to realize what was the most bothersome of my symptoms (for me it was dizziness, nausea, overall weakness) that made me want to get blood work done by my nurse practioner. Mind you--an NP helped me more in the last 2.5 years than any specialist. Maybe you should revisit what was the 1st onset of symptoms like for you?

For me--it could have been easily dx'ed as panic disorder...but it's not. Or conversion disorder. Blah.....Not it...I am glad to say. It's terrible being told its all in your head. That's what the Neuropschy Eval told me...it was all in my head, and that i had no hope for the future. They didnt even bother to consult with me after the test, just sent those really low-ball interpretations in a very carefully worded letter. Don't let that Neuropscyh Eval get you down. I have disregarded it almost completely. Except for one fact--it did show i had cognitive strengths where i thought i had weaknesses, but the therapist thought i had problematic frontal lobe temporal involvement (or lack thereof) haha. Funny becuz my seizures or partials were in the left temporal lobe...so of course that effects your thoughts and emotions. I now know i have Lyme's which has caused the brain dysfunction and the pseudo or NEAD. Get blood work done...and be mindful of what your symptoms were when you really started to go downhill...go to a family doctor for help if you havent yet.
 

No Shame

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Oh and Family Docs aren't absolute

Meaning, they don't know what to test you for anyways...i look at mine as a means to getting referred to specialists, but they will run the blood work like nobody's business if you are specific enough. It took me 2.5 years to think of Lyme Disease test...cuz they didn't. But i can tell you no Epi or Neuro Doc would have ordered the test. They see abnormal brain waves, and they just want to keep sticking wires on your head :soap: Now i'm done.
 

Ruth

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Hi No Shame,

I am sorry that you have Lyme's, was it your idea to check into it? Or did someone you know tell you about the possibility? I would never have thought about that. I have never been tested for Lyme's disease.

You are right, when someone first has symptoms that they have, they need to report it right to the doctor? It is also a good idea to keep a journal of dates, what happened and how it happened. That way the doctor has a better idea of what is going on.

Good for you!! You gave us important information.
 

Ruth

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Matchu, thank you for the important information about NEAD.
 

matchu

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on my release form it says to stop keppra xr imediately and continue with the ativan and lexapro and serquiell
 

Ruth

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matchu

You were all ready on the ativan and lexapro and serquiell?
 
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Hello Matchu,

From some of your earlier posts, it sounds like our experiences are similar. I have had EEG monitoring, rules out epilepsy, and they concluded I have BOTH PNES and Panic Attacs.

I also took at 300 question profile type test - it took about 1.5 hours, not 5, it was just multiple choice, but basically said I had depression and a lot of anxiety.

At one point I was frustrated as my meds were not working, and making me too tired to run or walk. I stopped all meds and after 2 weeks I paid for it with inense anxiety attacks and seizures.

Now I am back on Prozac and Chlorazepate, and walking daily and jogging a bit. I am not cured but improved. Might I suggest to you to take up walking or running or both? Yes, its boring, but at least you can measure progress if you log your workouts and follow one of the many free plans on the net, you can get measurable improvement, and at least that makes me feel better in a certain way.

The other thing I would suggest is a book called the Feeling Good Handbook by David Burns - probably only 5 bucks used from Amazon - it basically tells you what CBT Therapy is all about, having a therapist woul be preferable, buto having this book is preferable to having nothing at all.

Good luck.

Steve
 
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