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Old 04-09-2009, 06:04 PM
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Hi Elaine,

I guess it was my first Neurologist that used the term "progressive" and "degenerative" and after watching my father it seemed to fit. I think it is that term that makes me worry. I guess I thought each seizure destroys a little more brian. Degenerative makes me think of Parkensons or Multiple Sclerosis.

My father was never diagnosed and refused to talk about it to us or a Dr.The best way to describe them was that he looked like Joe Cocker in concert. When he died the Er Dr's and coroner said it was heart failure. He was over weight and had had the flu all week. However I was the first to get to him that night and started CPR. I always just felt it was a seizure. At that time I had never heard of Sudden Unexplained Death in Epilepsy but am aware of it now and feel my dad fits it. He was definitely presenting Tonic Clonic behavior and had lost his bladder. Our family had watched him have episodes our whole lives. My sisters believe he had it also. Last year I was visiting my uncle in Liverpool and read my grandfathers death certificate. It stated he has passed from a seizure following a long bout with pneumonia. He had been in a nursing home for several years diagnosed with Alzheimer's. My Nana refused to believe he had Epilepsy - I guess it was the stigma. That was 1982.

I am currently being considered for surgery. I've been on three different medications in the last year. I have a cavernoma in the right temporal lobe with some scar tissue. I've had the week long video EEG and the WADA. So far it shows that I still have very good memory in both sides and my seizures are focused there (where the cavernoma is). My case goes to the surgical conference next week and I'm meeting again with the surgeon in May.

I was so glad to hear how well you're doing. I've read many of your posts and love the way you write. I'm not sure if its your picture, the way you write or just being English (I love all things English) but I've given you my Aunts voice and can almost hear you talk as I read. I would love to read your book.

Thanks for everything. God Bless and Take Care.


Last edited by flinnigan; 04-09-2009 at 07:54 PM.
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Old 12-02-2009, 08:18 PM
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i hope this is ok to post here

i think some auras are seizures and others arent. Im guessing this is best place to post how my auras are. I generally get either this weird feeling sensation through my body and only way i can describe it is I feel funny during it. the other is a halucnation I see things that arent there. I could with feeling funny could get either a tonic-clonic or complex partial with the halucnation ones its the halucnation then complex partial that generalizes into a tonic-clonic and really only reason know on the second one because of what people and notes tell me I have no reloctoin of it all i remember with first is that funny feeling and no clue after till get after feeling and what people tell me. I only ever had a smell and taste aura once it was both together and nothing happened after
When life spins out of control i hang on for the ride and remember that i'm still alive and can walk wich reminds me that life isnt always as bad as it seems.

hugs amanda-beth
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Old 12-03-2009, 08:59 PM
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I have never had to deal with tonic clonic seizures luckily. I just got back from my week 48 appointment in the neuropace RNS clinical trial. The doctors showed me the way that my brainwaves look in comparison to people without epilepsy. Rather scary the activity, and the doctors are amazed that I don't show more simple partial seizure symptoms. However they did show me the timeframes when I reported my auras such as muscle spasms, eye twitching, hallucinations, and the weird taste. each one of them showed some sort of seizure activity, and I actually saw how my implant delivers therapy and the effects it had on the seizures, it would stop some amazingly. This does make me think that all of my auras are seizures.
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