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Phil from Oz

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HI to all, and what a great forum to stumble onto !

Brief rundown....54 years young and living in Canberra Australia. Have had three nocturnal seizures, first one 1984, was too young and stupid to get diagnosed !....second one 1997 while holidaying in Canada, diagnosed mild nocturnal epileptic, put on tegretol 100mg, which I took daily until mid 2006.

I then stupidly decided that I might try a week without the meds...anyway a week turned into two, and two turned into 7 years !.....5 weeks ago I had my third (most violent) seizure, biting half way thru my tongue, which I didn't do the first two times, and spasming my back muscles to a point where I was sure I had injured my spine, and went for xrays. I could barely move the first week, and am certainly happy the damage is only muscular, but it is still sore now some 5 weeks later.

I am surely no longer in denial haha and obviously back on tegretol, and I will do whatever It takes to make sure I never have another of these horrible seizures.

It's great to know there are others who have been thru this trauma, and so happy to have access to great knowledge from people who totally understand what a toll these seizures take on the body.

Thanks and best wishes to all members.

Cheers Phil
 
Hey Phil, welcome to CWE!

I'm a struggling 41 year old, also on Tegretol. On Sept 17th my seizures returned after a 10+ year med-free hiatus. It was a short tonic-clinic, but enough to remind me of my mortality (and mow I can't forget it). For me the lack of meds was due to an extended period without insurance -- I just couldn't afford the meds or neurologist visits. But now I'm in a better place... and trying to find the meds that work again. Keppra was nothing but a bad experience but the Tegretol seems to be working if I can deal with the side effects.

This board has been so supportive for me and there are some really helpful folks here. I'm still a relative newbie... but learning everyday.
 
Thanks JeffD for the welcome, and sharing your story !....wow, +10 years, that is amazing...here I was thinking I must be unique having a seizure after 7 years med free....hmmm, just shows how naïve I've been.....but i'm taking charge from this point, and finding this forum will be such a great moral support...i'm very very happy to have found it :)

Sorry to hear about your insurance woes bro...we don't have as many problems re insurance/meds here in Oz, insurance is optional, and meds are still reasonably priced, at least tegretol is anyway ;)

thnx again and catch ya on the forum :)
 
Hi Phil, welcome to the forum. :hello:
 
Hi Phil,

Welcome to CWE. This forum was made out of love by Bernard for his wife Stacy. That love permeates thoughout the whole forum.
 
Hi Phil.

It was a couple years after I stopped taking my medicine that I had my first tonic clonic. Your story sounds familiar. :P

Welcome.
 
Hi N Sperio,

Did you get off of your medicine "cold turkey?" That will cause seizures. Only get off of a med under a doctor's supervision.
 
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