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can someone please help me? i don't think that i'm doing this right. can someone please respond ? i have been havin these "so called seizures" i start by getting a funny feeling like a tingley sensation and start to space out i i shake and twitch and either pass out or fall asleep i have a doc appointment with neuro in tampa on the 27 can someone tell me what to expect? nervous in chuluota.


Hi Nervous,Just curious why you call your experiences pseudoseizures? Has someone told you that they are? Have you had any testing done yet (EEG, MRI, blood, bp)? Pseudoseizures are typically exaggerated and dramatic-looking seizures. Your description of what happens to you does not seem to fit that. It sounds like a complex partial seizure. Complex partails don't cause me to pass out, but they are incredibly draining. When they occur as I'm falling asleep, I won't wake up from it (nor will I be aware that one occurred). Anyway...if you haven't had previous mentioned tests, you can expect that after you see the neuro. They probably won't do an EEG and MRI that day, he/she will go over your symptoms and do some basic tests in office. Testing blood pressure, coordination, reflexes, ordering blood tests. They may then go on to schedule MRI and EEG tests. If you could bring an eyewitness to one or more occurrances, to tell exactly what they've seen each time, that would be very helpful in diagnosis. The doc usually doesn't prescribe AED's (anti-epileptic drugs) until the tests have been done and a diagnosis has been made.Try not to worry too much (I know, easier said than done!)...take it easy. Take care!Heather :)

thanks heather for your response. I was in the hospital for 5 days in the begining of june,they did all those test and nothing showed up. since i had a normal eeg the dr. said it was most likely pseudoseizures. I'm on dilantin clonazepam phentoin and zoloft. I'm not allowed to go back to work yet or even drive. I hope they can help me in tampa when i go on july 27,maybe get some answers. thanks again anna [nervous]

Anna (nervous :-),I've got tell you, that doc just bugs the heck out of me! People with E have normal EEG's all the time. Now, I'm not saying that you do have epilepsy. But it shouldn't be ruled out until after you've seen a specialist. You may need to do a sleep-deprived EEG or an extended VEEG in order to capture some abnormal electrical activity. How often are you having these episodes? (daily, weekly,...) Did you go through a traumatic event shortly before the episodes began? Has the dilantin and zoloft effected your episodes at all (less often, less intense, or changed the event)?Hope to hear more soon...good luck on the 27th!Heather :)

hi heather, just posting this here to see if you got my message I forgot how to do it now I think I remember.please let me know if you got it. thanks agian anna

I responded a couple of days ago to your e-mail...did you get mine?Heather

hi how are you doin? I'm doin alright, sometimes.seems like a go a couple of days feeling fine then all of a sudden I start feeling funky again.I had three seizures last I guess one right after another. my 13 yr old son was with me he said he asking if i was all right and i was just staring blankley at him and that i started freaking out and crying like something was scaring me. is this normal or am i just out of my mind?i know it scared him,cause he doesn't know what to do for me. I'm at the point where I don't even want to go out anywhere for fear of having another attack in public its so embarrasing, but I don't have much of a choice do I?I feel like such a crybaby pouring out how I feel on here, so I'm sorry if I'mburning your ears. thanks for listening. anna

Hi Anna, I doubt anyone here is a whiner. Some have it worse than others, but we all know having a sz is rough on us and those around us. I remember before I had my first one, a woman at work had a sz and I felt so stupid not knowing what to do. I haven't heard of pseudoseizures before. What are the symptoms?

hi mark, pseudoseizures resemble E but when you do all the tests nothing shws up. dr. say that its something traumatic from chldhood like maybe being molested or the death of a loved one that you block from your conscionce don't think I spelled that right. But I was at a friends 40th b-day party yesterday and had a couple more seizures one of friends was there who has daughter with E and she said I was convulsing> I felt like such an idiot after I woke up had to lay down for awhile cause I was drained. thats the worst part feeling like a total fool. but I have great friends and they just want me to get better. well thanks for talking to me hope to here from you again hope your doing fine. anna

hi heather, how are you? I'm doin fine.I got the results back from my veeg. I don't have E, what they say I have is psycogenic non epileptic siezures. I guess that a big relief. So now I have to find a psycologist to find the root of my problem. I've never seen a psycologist so I don't no how they can actully bring things up that happend in past to help me. But if it works then I'm all for it. I just want my life to get back to normal. I've cut down on my phenytoin sodium to only 2 at night. And I've had a good week. well I just wanted to let you know how I am doing hope your doing fine. THANKS ANNA

Hi again anna,I'm glad to hear that you got a definitive diagnosis. I hope that you get to the root quickly, so that you don't have any more troubles! I'm sure, that while relieving (that you don't have epilepsy), it must be a little scary and frustrating too (as you question what the problem actually is). did the neurologist offer any insight? or was it just like, "well, it's not epilepsy. go find a psychologist."? my other question is, why are you still on dilantin if your seizures are psychogenic? do you need to be weaned off?hugs to you!! feel free to e-mail me if you need someone to talk to.Heather ;)

Hi nervous, I had the MRI,EEG,CTscan and all came back normal.My old docs said don't worry there is nothing wrong with you.I followed up with a new nuero and he did the VEEG and it showed to be abnormal.Do not give up,get a second opinion if needed.I do have E. I hope you get some good results.When I was told that there was nothing wrong with me I felt like I was going crazy,I knew that there was something wrong but did not know what. Good luck and keep us posted on how you are doing. P.S. Don't be nervous,that is the wourse thing you can do.

hi maggie, my tests came back normal and the dr said it was psuedoseizures caused by something in my childhood, thats a bunch of bunk. I had a very loving family and still do to this day if its know big deal than how come I'm not allowed to drive or go to work it really is a bummer sitting at home every day you can only clean so much now I'm doing cross stitch that helps some but even that you have to take abreak from. hope to find somthing out on the 27. hope all is well with you thanks agian for the info anna

Hi everyone,I have had a normal EEG and two normal MRI's and my neuro didn't even blink at saying I have E...she said it is TLE based on some discussions of things that I have always done that I didn't realize were simple partials...I thought that to have had a seizure you had to pass out or loose time or something like that. But, if you look on this site and read the link to auras, you can find that there are all kinds of behaviors that are called auras here but most people agree that they are "mini seizures"...I appreciated that she wasn't caught up in semantics but after ruling out things like brain tumors or heart problems, she moved on to treating my symptoms!Anyway, find someone who isn't more concerned about the name of what you have but is concerned about how to help you deal with what you are experiencing and how you feel and what you need to help you move forward in life. Good luck,Toni

Hi Anna, I can relate to how you feel.Had to take a leave from work,which I really did enjoy,cannot drive,cannot swim(unless I have a life gaurd)haha.All I do is clean and clean some more,true,how much cleaning can one do? I also have a loving family,but when you are use to being independent and now you have to rely on everyone it gets depressing,to say the least.Some of these docs don't want to believe that they could be wrong.Good luck and don't give up.Please keep us posted on how you are doing.

hi maggie,i really identified when you talked about feeling crazy without being correctly diagnosed. i had this crazy psychiatrist who diagnosed temporal lobe epilepsy, especially after she asked if i had moments of missing time, i replied many times. the crazy part was she never described what the seizure was like and i had complex partials which made me halucinate alotwith them. she prescribed tegretol and an antipsychotic. every time i mentioned a halucination(usually distinct visual, some auditory and one olfactory) she upped the dosed of the antipsychotic leaving the tegratol alone! not knowing the halucinations where a part of the seizure, i thought i had TLE but was also crazy and they couldnt do anything about it. of course she also gave me two other incorrect diagnosis-basil

I also had normal test results. My nuero sent me back to my GP. My GP thought I was having anxiety attacks because my life was a little crazy. Three months later I got a letter in the mail revoking my Drivers license. 5 years later I went to another Nuero, in another city, and although he had never heard of symptoms exactly like mine, precribed first Dylantin, then Carbatrol when the Dylantin spaced me out too much. The Carbatrol works great. Six months later I had my drivers license back. I occasionally have Aura's but never the complete blackouts I did. So hang in there. Pursue the issue until you are satisfied you know as much as possible first about your condition, whatever it is, and second until you are satisfied you have a Nuero who listens, which is very important, and can work with you to find the right course of treatment. Don't settle on the first drug if it zones you out too much. And this is the best site for information and support, the people are knowledgable, and caring. Good Luck. -- Mersix

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