Epilepsy & Seizures Support Group

You seem like such a loving person, I wish we could answer your questions to your satisfaction.

When we have seizures, we can be in danger depending on where we are and what is around us. For example, if we are swimming and a seizure comes on, we are in danger of drowning. That's not what you want to hear, I know.

I bet you husband's doctor would give you an honest answer to that question. For the vast majority of us, epilepsy is not a life-threatening condition.

The answer that first popped into my head when I read your post was "we are all in danger", and by "we" I don't mean epileptics, but people. Is this not one of the reasons we pray? For protection?

Well here is a big prayer for all of us, with your husband as the leader, that as we live, may we be protected from danger and suffering.

It's our responsibility as seizure patients to do what is necessary to keep our lives safe. I agree with Chris.. danger is a variable... not a constant. I'm sure you are doing what you can to keep your husband safe. It's a tough time... alot of adjustments. Getting the right combination of meds in the right doses is always a journey. Nothing that love can't bring you through.

You should probably just keep in touch with your nuero and make sure his meds are in check and the side effects aren't too bad. He might just be one of those people who needs high doses of medication. What kind of seizures does he have? If I may ask...
My cousin has gran mal...they tried all types of meds, the strongest they could find, and the highest doses. And they worked for awhile, but he built up an immunity to them. So now he's not on anything. They're considering surgery. So, just keep trying the meds and maybe they'll work. You're doc would never put him on anything that would endanger his life...

No your hubby life is NOT in danger!

Many people have seizures that are not treatable by medication - I'm not sure what has already been replied to you, because I'm just lazy - and these 'intractable' seizures fall into a couple of categories.

Some of them can be treated quite definitively with surgery. Some are psychogenic and not caused by electrical overstimulus - and thus meds have only a placebo effect. Some are truly intractable and can only be moderated through lifestyle choices and never actually controlled.

I fall into that category (so far, anyway, can't afford to even talk to a nuero about surgery)and my meds are always getting upped and yet my seizures continue to increase bit by bit, both in frequency and intensity.

Yet I live a pretty normal life, I have a pretty dangerous job, and I have a pretty wife. Limitations are what they are - seizures are almost never fatal, unless the person happens to be juggling chainsaws or wing-walking or whatever. Just something to adjust to and cope with.

He's lucky to have a gal who cares about him. There's no perfect gauruntee in this world, I'm sorry to say, but so what. A jet could crash into your house while you're reading this anyway.

Good luck and cheers -

Thanks for your replies...Sorry, I wasn't clear in my question. I wasn't meaning danger in terms of drowning or walking in front of traffic (That one he's done..Thank God, an army of police and his twin brother were able to stop traffic until they got him off the road about 30 minutes later. Being out of it, he fought off everyone trying to help him.) What I was meaning to ask...is his life in danger if he doesn't get control of his seizures so that they get more and more frequent and the meds keep being raised higher and higher.

I was asked a couple of questions. First, he's been through med after med. He is currently taking daily 9 tablets, 200 mg each of carbatrol plus 1 tablet 100 mg of carbatrol, 7 Keppra a day, each at 500 mg, Zonegran so far 200 mg...just starting so could continue to be increased, and Ativan as needed for repetitive seizures.

I was asked what kind of seizures he has. His first seizure was a 30 minute!!! grand mal seizure. He had another one around the same length of time that same night. Thirteen months later he had a grand mal and totalled our car, but survived. :) He has gone into repetitive grand mals, but that was years ago. He has petit mals sometimes. For the most part, while on meds, he has temporal lobe complex partials and is out of it up to an hour at a time now.

Trophy...unlike everyone else...I would suggest that you contact your local local or national epilepsy foundation for information on this one..specifically request information on sudep and status epliptic... i also am on 4 different meds and am not controlled...and am seen by a epilepsy neuro out of a epileptic unit in a hospital...for the last 8 years...
call your local foundation hon..that is where you are going to get your answers...that you are looking for...sigh

hugs
heather

hi trophy,

As Chris eloquently mentioned we are all at risk of possible danger depending on the circumstances.
It sounds like your husband has temporal lobe E which , in the past, has gone into secondary generalized seizures.
Have you ever searched out information on possible surgery to correct his seizure problem? Moreover, I'd very strongly suggest you see an epileptologist - a neurologist that focuses their practice and education on E. As one who saw many neurologists, it wasn't until I saw an epileptologist that I became controlled.
Epilepsy is just one small facet of neurology and ,truth be told, not all neurologists are competent in the area.
best wishes to you and your husband,