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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: Anyone Else??

Submitted by EllieW on Mon, 2006-08-28 - 22:56
Hi Beth. I'm really sorry to hear you're going through this - and it isn't at all uncommon to go without a diagnosis (from what I have learned, yes, the hard way). Have they done any diagnostic testing on you? MRI, MRA, PET, EEG, etc? Also, I have similar 'episodes' and they told me they were focal seizures which can vary in so many ways. You're not alone at all, I'm typically available a majority of the day and evening if you need anyone to talk to. Hope you feel better soon.

Re: Re: Anyone Else??

Submitted by pookin on Tue, 2006-08-29 - 14:00
Ellie, Thank You so much for your reply. I've had several EEG's. The doctor just said yeah, you have abnormal brain activity and that was that. It took me 7 years to get a doctor to do MRI, I just wanted to make sure I didn't have a tumor or something but the doctor just wouldn't do one. Finally I got one done and I was told it was normal. Is it possible to have more than one kind of seizure? I've been reading and I have symtoms of several of the descriptions on here. Like the one that says Sensory Seizures - ringing in ears, feel pins and needles or feeling like I floating in space. Autonomic Seizures - changes in heart rate (which I'm on meds for but don't always help) Motor- jerking of muscles (in hand) or stiffening. and Psychic Seizures-problems with memory ro finding the right word. A doctor has never went over this stuff with me. He just prescribed Carbatrol and thats it. How do you explain to someone that your having a seizure if your not showing symtoms they can see? I just like to be left alone while I'm having one of these episodes, but how do you tell someone? Thanks so much.

Re: Anyone Else??

Submitted by carolj on Mon, 2006-08-28 - 23:39
Hi Beth I have had seizures for 13 years and up till this date the doctors can't seem to tell me why I get them or from what part of my brain they are coming from. During these years all test have been performed. But I am diagnosed as epileptic...At first I was able to know when I was going to have one but, in the past two years I am just having blackouts anywhere. The doctors have kept me from driving and working and they have changed my medications 3 times this past year. Also I noticed in the past two years that my right arm gets a numb and the pain goes to my right hand. This happens after I get a seizure. So I don't know what is the cause they cannot tell me. Except I know how you feel it is very fraustraiting. All I can tell you is hang in there and try to get information off the internet from other people like us. I don't belive everything the doctors tell me. I believe there are too many people having seizures and there has to be a reason why.... Good Luck Carol

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