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Hard to Diagnose.
Thu, 06/24/2004 - 10:58Topic: Family & Friends
Is there even one person out there who DIDN'T know what was wrong from the very start? I have seizures, usually, in my sleep. It has been 12 years now. They started 9 months after a serious car accident. After about 5 years one Neurologist witnessed an episode and stated that it "looked like a Complex Partial Seizure" We tried Tegretol and Rivotril, nothing. We have read quite a bit on this type of seizure and it fits my behaviour. I have to live in a ground floor or basement apartment due to the danger of a balcony or stairs. After 9 years they finally put me on dilantin. It seems to work. But we still don't know 100% what is wrong with me. I have met a few people with epilepsy. Most of them were extreme. Without medication it was 100% noticable. Not with me. They happen when they want to. Has anyone else experienced this??? It would help to know that I am not the only one. That I am not crazy. Any response would be greatly appreciated. Thank you Stacey.
Comments
RE: Hard to Diagnose.
Submitted by mexican_fire on Wed, 2004-06-23 - 14:24
Hi Stacey~~You have heard from me in your car accident thing titled: MEDIC ALERT. POLICE IGNORE.As for not having a clue as to what was wrong with me, I had an inkaling about it, but really didn't know. You are NOT alone. There are lots of us in your position in this country.As for the goons who don't take their meds, that is actually their problem, and no one can fix it except them. I feel sorry for them, but there isn't a thing you or I can do to make it any better for people who don't want to help themselves by taking their meds, so they are not always sick.I too have Complex Partial, but Simple Partial, too. I have Grand Mal, and Myoclonic as well.My seizures are not well controlled, but are controlled to the extent I can pretty much function. They happen frequently, when they want, or when they are triggered. Alot of times in embarrassing places like parking lots to restaurants, and in motel rooms. The restaurant one was a Complex Partial, and the motel one was a massive Grand Mal.I had to go through 6 months of tests to get my final diagnoses.I had to have the neuro work up, 3 EEGs, two of which were abnormal, an MRI, 2 CT scans, blood work, and eventually a VEEG so they could unscramble the mess.It worked, and I have what is referred to as a Mixed Seizure Pattern with 4 types.I take the max of Neurontin-3600 mgs, and 500 mgs of Depakote. The low dose of that works just fine for me, because I already have a low seizure threshold, so it responds.Before that, I was on Tegretol XR-800 mgs for 3 years, and they added the Topamx to it, and then the Neurontin.You are nowhere NEAR alone with this.nancy
RE: Hard to Diagnose.
Submitted by momof1 on Wed, 2004-06-23 - 14:53
I was on tegretol, but when I read the doses other people are on I don't know what my doctor was thinking .5mg a day. No wonder I didn't respond. So of course they said it can't be seizures.
RE: Hard to Diagnose.
Submitted by momof1 on Sun, 2004-03-21 - 10:03
Hey Cindy. I'm glad you gave me your email, but it doesn't work. Mine is kdzrcool@yahoo.comThanks, Stacey