I'm sure that doesn't make sense. But it's true. My hubby is not an epileptic, but has seizures. He has a brain deformity called cavernous hermangiomas. Blood vessels in his brain were not formed correctly, and they have small holes in them similar to a slit in a straw. These vessels leak, putting pressure on his brain. He has had three brain surgeries, one a 8 yrs old, one at 18, and another at 19. One was for avm's and the last two were for teh cavernous hermangiomas. He was seizure free, without meds, for 12 years from 19-31. Then suddenly last year he began having grand mal seizures. All his seizures are grand mal, and all last 3-5 minutes.

He was taking dliantin, but his body adjusted to the dose too quickly, and he was constantly having to go to the dr for it to be upped. For the last six months he has been taking topamax, and it has done well. Now, just three days ago, he had a grand mal seizure. The dr has combined topamax and dilantin for him.

I fear that there will be no more time of being seizure free for him. I think seizures will be a reality we will have to live with. But praise god, atleast he's alive. I'd like to hear from anyone with suggestions on how to live with seizures. I'd also love to hear from anyone who has this disorder, but since it is evident in less than 1% of the population, thats a long shot!
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replied May 17th, 2005
Update: we are now on topamax and trileptal. Any ideas?
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replied May 24th, 2005
Experienced User
How is he doing on topamax and and trileptal? These meds can be pretty good for some people. (although for some they call it dopamax because they feel very zoned out on it....Weightloss is common too)


is he doing better on them?
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replied May 24th, 2005
He claims not to feel zoned out......But he's always a little zoned anyway. :d
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replied October 20th, 2005
Avm & Epilepsy
Hi everyone I am new to the site, but pleased that I found it. I have been reading the postings and found them a great help, I was diagnosed with a cavernous hemangeoma in may 2000, I was then told that I had partial complex epilepsy, I have had quite a few problems since but still coping. I will be keeping up with the site --my best wishes to you all, chris :)
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replied October 21st, 2005
He Had Repeated Seizures, Then He Is Having Epilepsy
The medication might have controlled the frequency of his seizures (epilepsy). If you discontinue his medication, you can tell whether he is having epilepsy or not.
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replied October 24th, 2005
In Re to Avm Surgery
I started out having petite mal seizures as a pre teen, then turned into grand mal seizures by mid teens... I had the avm surgery january of 1986... They told me to take tegretol for a year & i'd be fine... I still have grand mal seizures to this very day... I'm currently on lamictal & find it has less, if not very little, side effects... I was also on tegretol, of course, dilantin, phenobarbital & a few others thought the names have slipped my mind it's been so many years & so many combinations of drugs... My point is, maybe we can help one another? I find it a rarity to meet anyone else who has had the avm or the surgery...
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replied October 26th, 2005
Re: Avm & Epilepsy
Hi i'm new to this website...About 10 years ago I was diagnosed with avm. Doctor said it was too big to be operated and i've since had an embolization to help controlled the situation. I had my first fit, which was how the avm was diagnosed, ever since i've been seizure free until this year, 10 years later and all of a sudden i've had 3 grand mal in 6 months. Previously been stable on tegretol and now dr increased my dose of tegretol. Would like hear from anyone with the same problems.
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replied November 26th, 2005
I Suffer From Seizures And Just Got Pregnant
I take trileptal, anyone else?
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replied December 13th, 2005
I have been having seizures for around 5 years,started getting them from a stroke,then got todds paralysis from consectutive seizures.I am newto even talking about this,i am taking 3000 mill of keppra , 600 mill ofdilatin, the only problem is they keep raising my dilatin because my levels stay low and still getting seizures ,i dont say much to friends and family, frustrating not driving working,and have so many medicine changes, I get blood taken every week. My doctor follows up constantly, what im asking is ,how do you cope with this, im not complaing just frustrated ,thank you
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replied February 28th, 2006
Male 34 yrs old and had my 1st seizure last yr and my 2nd one last week. Dont have epilepsy but they cant tell me why I had these seizures. I have been taking dilantin since the 1st one and have been switch to trileptal after the second seizure. I want answers and nobody can really give me any, its extremely frustrating!!!!
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replied February 28th, 2006
Hey
I have been suffering siezures for 6 years now.They started after I had my daughter.It was a complicated birth,emergancy c'section.She was 1 month premature and she was distressed,which we later discovered was because I had pneumonia.Once my daughter was born I started having siezures,1 every minuite for 24 hours.Then I went into a coma for just under a week.I was put on a whole coctail of med's,consisting of eppilim,phenytoin&lamictal.I have came off the eppilim and have now started taking keppra.My consultant is also trying to get me off the phenytoin as it is a dangerous drug.This is proving to be difficult,but I want to give it another go.
My point is,i have never bieng diagnosed with anything.I am treated as an epileptic but I am not.What I have been told is that a certain percent of epileptics never get diagnosed as the part of the brain that is affected is so small it won't show any different on the scan's.As frustrating as this is,i can't do anything.If nothing shows on all these scans i'v had then what can be done? :!:
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replied January 24th, 2009
Shelbe, do you have addison's disease?
You crashed after delivery? Did you investigate for Addison's Disease? It's a simple blood test and hormone reaction test (ACT stim test). You should ask an endochrinologists to examine your case and test you for it. People with Addisons need to know what they have, and wear medical alert bracelets because their episodes (seizure-like, but differet) are potentially lethal.

Good luck finding answers!
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