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Looking for a little support

Thu, 04/06/2006 - 12:23
I just joined the community searching for some people to speak with who may make me feel like less of a weirdo :P . I have been having nocturnal seizures for about 5 years now. I've tried 7 or 8 different medicines to control my seizures (with the least amount of side effects). Now, I've switched from Tegretol to Trileptal. I got off schedule on the medecine ONE day (yesterday) and I had a seizure in my early morning sleep. This time was a little different because I actually got up after the TC part of it and started to undress for no apparent reason. My husband couldn't figure out what I was doing and I don't remember anything (never do). Apparently, this was more of the seizure or another seizure maybe? I have heard that performinmg activities like this while you're sleeping could be a Partial Complex. Also, in the last year he says that I've started screaming with my seizures and looking at him with wide-bugged out eyes and seeming like I'm having trouble breathing. The thought of this really creeps me out. Anyway, I just wanted to touch base with some others who may have similar experiences. I have my first Video-EEG (!insurance problems = had none!)scheduled for the end of next month. If anybody would like to share their experiences here, I would love to get a feel for what to expect. Also, I'm dealing with some big mental stress in regards to having epilepsy (and this is where I was looking for the support). I just laid claim to the fact that I do actually have it in the last year or so; before I was pretty much in denial. I hate the sense of lacking self-control. I hate not knowing WHY I suddenly started having these things. I hate putting my husband under so much stress. I hate taking daily medication and I feel like the medications (or maybe the seizures themselves?) have affected my memory and my verbal speech. This has been a pretty big problem being as I'm trying to get my M.A. and am a mother of four. When you can't recall a name or formulate a sentence, people automatically think you're stupid. Also, with my studies, my sleep patterns can be somewhat irregular. This may have contributed to this last one I had . . .

Comments

Re: Looking for a little support

Submitted by stariel on Thu, 2006-04-06 - 19:26
Hi, I understand how hard it is at times. I have been working on accepting my epilepsy for the past few years. I hope you know that it's really a part of you that's okay and you can accept yourself fully just like you are. I have nocturnal seizures also. I am new to this site also and have been really looking for support in knowing others have the similar condition. My epilepsy started when I was 12, out of nowhere. I have Tonic Clonic Seizures while sleeping in the morning. I have been on Depakote for 3.5 years and have been seizure free that whole time. Yay! I am wondering if anyone else has a similar type of nocturnal epilepsy. I am now 25, and I tried Dilantin and Tegretol before Depakote, but Depakote seems to work well. The only thing is that the side effects of the Depakote are that I am really really tired a lot and I gain a little weight and my digestion is a bit off. Better than seizures. Well, good to talk to you!

Re: Re: Looking for a little support

Submitted by rlhartleysmi on Fri, 2006-04-07 - 09:43
My seizures go back and forth - sometimes in the morning just before I wake up, sometimes just after I fall asleep. They may be Tonic Clonic or parital complex. I think that I wake up off and on in my sleep because I have slight sleep apnea. I also have vivid, long dreams. Who knows? I had my first seizure when I was maybe 28. Med side effects are the worst. After Dilantin (which was horrible), I was put on Kolonopin. THAT was like being loopy drunk half the time . . . kinda' fun, but not good if you're trying to finish college. It's nice to hear everyone's reactions and thoughts. I'm feeling like less of a weirdo, are you? :) ~ Rach

Re: Looking for a little support

Submitted by Lynn Maxwell on Sat, 2006-12-30 - 23:26
Hello, I'm sorry to hear that your feelings are so up on the air. I do not know where you are located but I would like to talk to you in more detail about how you are feeling. I'm here in Phoenix. If you would like to talk to someone about your thoughts and feelings so that you do not hold them inside I would love to be a support system for you. My email address is lmusic20032003@yahoo.com - Please email if you wish. Hope to here from you soon Lynn in Phoenix

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