new to forum...lots of questions

[justcantunderstand]

Hello all, my name is Ted...a little about myself...when I was 17 I began having seizures--grand mal type. Since then I have them once every 3 to 4 years. Usually things that bring them on are lack of sleep, sometimes high doses of sugar or caffeine or a combination of both, video games, and emotional stress. I drink coffee most every morning--with sugar, but actually have never had one after. Orange juice is another story however. I have stayed up many times all night and have never had one, and I have taken in alot of sugar before and havent had one. However, when these are combined, they are prone to bringing one on. They hit me from out of nowhere and usually happen in the morning. I requested my doctor put me on medication and he did against his will. He said that me having them so rare was not worth putting me on dilantin but I pursuaded him to do so. I have since had one while on the dilantin and now have changed doctors and meds. I started taking --on his directions--tegratal--which then caused me to have two siezures on the same day...highly unusual. I also had to symptoms which I never had before...nose bleeding and nausea...while having it. He then added keppra to the tegratal--a drug I cant find much info on. I havent had on since, but now Im walking around feeling like I could at any moment. Im risking losing my job, and wondering what company would hire someone with my strange condition. Does anyone have any answers or comments that might help me understand what in the world is going on. By the way, they have done a MRI, CAT scan and an EKG and all have come back fine. Ted

[Bernard]

Hi Ted, welcome to the forum.

Sounds like the meds are making things worse, not better. Have you tried eliminating the coffee/sugar/oj from your diet? Maybe you wouldn't need any drugs at all (like your first doctor indicated).

Do you have any non-grand mal seizures? BTW, eeg tests come back normal all the time for people with epileptic activity - just means they didn't catch any at the time they did the test (ie. it can prove conclusively that epileptiform activity is present, but not that it doesn't exist).

[justcantunderstand]

Hi Bernard, like I said, I have actually never had one while drinking coffee. only on days when I havent. Might be something to try though. I am willing to do anything at this point. This new dr thinks I should definately be on meds, but like most people these days, I think he might be covering his self legally. who knows. I am going to seek out a second opinion. Now I am afraid to quit taking the meds as most folks on here are. Just changing the meds was bad enough. these things are aweful and I wouldnt wish them on my worst enemy. I really feel for those that have them more frequently than I do. The day they find a cure cant come fast enough!

[Bernard]

For what it's worth, my wife is very sensitive to caffeine, but it takes 12-18 hours after ingestion before the seizure activity starts.

The way it has been explained to me (by more than one doctor), everyone has a "seizure threshold" - even folks who have never had a seizure. Most people have a threshold high enough that stress, disturbed sleep, wacky blood sugar, etc. will not trigger a seizure. Other folks have a lower threshold and many combinations of triggers (to different degrees) can lower the threshold enough to cause a seizure. Understanding this, it only makes sense to try and eliminate or reduce exposure to activities (bad sleep, stressful situations/relationships) or substances (sugars, recreational drugs - stimulants like caffeine, etc.).

[justcantunderstand]

Well thanks a million Bernard. I think I will look into getting a second opinion from another doctor and try definately another diet. It cant hurt. I have heard this same info from doctors too and I just wish they would focus more on how to prevent this like they do for cancers and other diseases. I do appreciate all your info and just the fact that you are devoting your time to this cause. I will let you know if there are any changes. Thanks agian. Ted

[Bernard]

Sounds good Ted. Let us know how you get on.