Introduction: Focal Seizures

[jcschain]

Greetings,

Hello, I feel somewhat uncomfortable joining this forum. I was diagnosed with "focal seizures" about 16 years ago. Two years prior to that, I was falsely diagnosed with "panic attacks" and "chronic fatigue syndrome" and was prescribed the drug "Klonopin" which is a benzodiazepine. I'm 15 days "benzo" free, and I want to learn more about epilepsy, and the effects of different epilepsy medications. I was denied disability and I am having a hard time now. I am thinking about tapering off of the Dilantin to see if that will help me recover from the horrible long term effects of seizure medication and the benzodiazepine which i no longer take.

I'm still going through withdrawals from the benzodiazepine and am told by many that the Dilantin prevents recovery and healing from benzodiazepines. Before I started taking Dilantin, I would get focal seizures constantly throughout the day with hardly any time to recover. I have to be honest and say that the Dilantin does prevent me from EVER having seizures as long as the medication is in my system. My main purpose for joining this forum is to learn as much as I can about seizure medications and possibly find out if there is such a thing as a "good" one. If I do the research and find that there is a better one than Dilantin that is safer with less side effects, then I might try to change over.

I hope that my presence here and my reason for joining this forum does not bother anyone. I am no stranger to the worst suffering imaginable for years now. Benzodiazepines and seizure meds have ruined my life...hopefully not permanently. The story is much to long to post here. I can share bits and pieces as I make posts. I do not know hardly anything at all about epilepsy even though I am epileptic. I am fortunate not to get large seizures including grand mal, etc., but I fear this may very well be the case for my future if I try to get off the seizure medication. My heart goes out to those of you who are suffering much worse than me as far as the seizures themselves go. Take care,

chain

[epileric]

Your presence bother us????? Heck no, come on in, kick your shoes off & make yourself at home. We've got the place pretty well set up like a party- kitchen seems to be where everyone gathers (good recipes that help conditions as well), library with some great reference, a nursery to discuss the kids with seizures and so on. Even got a padded room to vent your stresses & angers.

As far as lowering your dilantin dosage, I would advise against it unless your doctor says as much. I would assume that allowing yourself a seizure would be worse than the withdrawl you're experiencing.

As for finding a "good" ant-epileptic drug goes, something I seem to keep repeating here is that every anti-epileptic drug reacts differently with different people so there is no good or bad one, just a good or bad one for you. From the sounds of it you've found the right one. If you want to search the site for more info you can use the drop-down "search" option at the top. You also might want to check out other some treatments besides drugs, most that work well in conjunction with meds http://www.coping-with-epilepsy.com/...ive-treatments and you would probably enjoy reading "the history book" in the "Library" with everyones experiences of various treatments http://www.coping-with-epilepsy.com/forums/f32/. I hope this helps

[neilB]

Hi JCSC,

I would agree with epileric, WELCOME. No need to feel as if you don't belong. We haven't run anyone out of town (well that I know of anyway, just kidding). I've learned a lot being here and just having a place like this was a big help. Take a look around, ask some questions and you'll do just fine. I also agree with Epileric in that I wouldn't lower the Dilantin. I was on it for quite awhile and eventually have switched to several different types and now on Keppra. And yes, each one has it's own "unique" personality and each one reacts differently with each person, the key is just finding the right one. Again, Welcome!

[Nakamova]

Hi JCSC, welcome!

Ditto to what folks have said above. Anyone interested in epilepsy info and support is welcome here.

Talk to your doctor about your concerns with meds, and recovering the benzo withdrawal. Tapering off any anti-epileptic drug med is best done very slowly, in small increments (I recommend even slower than "official" guidelines") and under doctor supervision.

The only official interaction between Dilantin and benzodiazepines is that they can affect each other's blood serum levels. In some cases the presence of the benzo increases the concentration of Dilantin in the blood; conversely, Dilantin can speed up the metabolism of the benzodiazepine so that the benzo leaves the body faster.

Like all the anti-epileptic drugs, Dilantin has a variety of short- and long-term side effects. On the plus side, it has been around a long time (since the 1920s at least), and those side effects are well-know. It's also a relatively inexpensive. Long-term side effects can include bone issues (it interferes with calcium absorption), gum overgrowth, peripheral neuropathy (loss of some sensation in feet and hands), and brain shrinkage. Your neurologist should check in with you from time to time to make sure that these and/or other side effects aren't becoming a problem.

Best,
Nakamova

[Endless]

Hi, Chain,

And WELCOME! I'm so happy you found us here in the CWE Forum. We just love more company - it makes the conversation even more interesting. We truly do welcome everybody. And most especially you!

Question: Did you ask your doctor about going off the medication? It can be kind of tricky to do in the right way. If your doctor isn't being responsive or helpful, maybe it is time for a new neurologist?

How long have you been seizure free? After a certain period of time, some neurologists do try to wean some patients off their anti-seizure meds, but that's a decision we usually leave up to the neurologist, who will base the decision on your history. Some folks have to stay on this stuff forever or risk seizures. Others can get off of the stuff.

About the misdiagnosis - many of us have been through that. A merry-go-round of doctors until we find a smart one who gets it right. Finding a good neurologist who is expert in seizures is really hard. Have you found one you are satisfied with and you think is truly helping you?