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Anyone Else??

Mon, 08/28/2006 - 22:04
I have been having seizures for about 10 years now. I am 32. Everyone else seems to know the type of seizures they have and why they have them, etc. I've been to several different neuologists, I don't like any of them, but they say I have Idoiopathic (excuse my spelling) seizures, meaning no one knows why I have them. I just started having them out of the blue. No doctor has ever told me what kind of seizures I have or what part of the brain they come from or any of the stuff you guys talk about on here. They act like I just don't need to know or wouldn't understand anyway. I've only had maybe half a dozen grandmal seizures, but I have these episodes (especially when I wake up or am very sleepy) where my right hand draws up and I can't control it and I feel scared or just plain bad all over and it usually makes me cry. I don't pass out from this. It might be better if I couldn't remember the feeling I get or the people staring at me. Last week when this happened, the muscle in my arm was "pulled" from this. It hurt so bad. It doesn't usually draw up that hard. Is this a seizure? Its been happening since the first grandmal. It usually happens when I start my period too. (or lack of sleep) When I have had a grandmal seizure, it always started like this, with my hand drawing up and it would move up my arm and when it got past my elbow it would be a grandmal and I would pass out. I would have this horrible dream that my body was melting. Its the worst thing I've ever experinced. I hope I haven't ask too many questions. If someone is similar to any of this, I would appreciate a response, as I feel alone in this. Thanks, Beth

Comments

Re: Re: Anyone Else??

Submitted by pookin on Tue, 2006-08-29 - 17:54
I don't believe what doctors tell me. I had a doctor tell me that my seizures didn't have anything to do with my menstrual cycle!! This was supposed to be one of the best neurologist in town! I thought boy am I screwed! Every month, the day before I start my period, I have a seizure. I knew there had to be a connection. At least I found a doctor that knew better than that anyway. Thanks for replying. Beth

Re: Anyone Else??

Submitted by Bloodyrose on Fri, 2006-09-08 - 18:02
Hi Beth, I completely understand how you feel. I was diagnosed with having grand mal (the easily identifiable ones ;P) when I was 15, and my mum put two and two together and realised some of my odd behaviour in childhood was actually simple partial seizures. I have been on medication before (am currently med free) and have been officially diagnosed with epilepsy, have had MRI, EEG, PET, the works, but have never been told where my epilepsy originates, or had types of seizure discussed with me. Now, fast forward to the here and now, at almost 25, and I KNOW I have many Simple Partial Seizures as well as some Simple Complex Seizures. Like you, I have the weird taste in my mouth, but I have many other experiences, like auditory hallucinations (calling out my name) and things like that, as well as a lot of deja-vu and feelings off going out of reality. I think many of us have different types of seizures, tbh. And if anything, we know better what is happening to us in terms of actual experience - we have to vocalise THAT to the doctor who makes the diagnosis, after all. It's just a matter of trying to get someone to listen, I think. I hope it works out for you. I know how frustrating it can be. I am trying to be put on different meds now, because lack of sleep, my periods, and stress, are just making them more and more frequent, so I can really understand where you are coming from. If you wish to talk more, feel free to drop me a line. Rachael

Re: Re: Anyone Else??

Submitted by pookin on Mon, 2006-09-18 - 21:37
Rachael, Thanks for the response. I swear I can't talk about this stuff with my husband or anyone. They would just think I'm plain nuts. I've heard a voice call my name a couple of times. The first time I was ready to check myself in somewhere. My husband just doesn't understand. All he says is "well go to the doctor". I'm just trying to tell him what I'm going through, I'm not trying to get him to fix it. If I ran to the doctor for every little thing like that I would just have to move in there. Anyway, Thanks for listening. Beth

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