How many different epilepsy drugs have you tried?

[Belinda5000]

I'll be trying my 22nd drug when medicaid decides I need it.

Belinda

[Jackson]

Hi

I am new to this forum. I have been on dilantin and depakene from age 17 to 35 and then removed of off depakene. Still on dilantin. Is being on one drug to long a problem? Has anyone been on one drug for this long, I am 42 now.

[RobinN]

If it works, I would consider it not to be a problem... that is unless you see signs of a problem. Some folks have problems switching from one to another, and some have organs that over time start rebelling to particular meds. Hopefully your doctor is taking tests at regular intervals so that you can compare one test to another, and see if you have signs of a problem.

My daughter had trouble on the four meds that we tried. So she remains med free.

[CathyAnn31]

3 different meds.

When I was 4 and diagnosed with psycho motor epilepsy, my dr gave me some kind of med that made me crazy hyper. My mom said I'd climb the chain link fence and take off, or run off while shopping with her. She doesn't remember what the name of that particular med was. They then changed me to Dilantin and I outgrew the seizure disorder not long after that.


Then at 39 I've had 2 grand mal seizures in the last 4 months and now I am on the 1st med (Lamictal XR) this dr has tried. I hope it works. Been on it 2 weeks and so far so good, no noticible side effects yet.

3 is my answer, and I'm sticking to it...for now anyways.

[stilldancing_98]

I have been on everything. But I love my Vimpat. I have not had a tonic clonic in atleast 3 mo now. Durring my menses is the only time I feel off. Or cold. And it does not control my nighttime myoclonics. I have a lot more energy. I get a lot more done. Im on the PTSA at Alexs middle school and he is doing much better. Should I dare say it? I'm happy. Teresa

[Kayleesmom]

There have only been four meds, but five different combos. Right now Kaylee is one three meds and so far so good. It is definitely trial and error when it comes to epilepsy meds.

[darcness]

Well my wife officially has joined the multi-med club. She started on Depakote which controlled the seizures well, but gave her night time myoclonics which she never had before. It also gave her just about every side effect in the book.

She's now weaning off that and going on Keppra. So far so good with that. Only 5 more days of Depakote left!

[Eve]

I was on tegretol, Dilantin then carbatrol , then topomax and then Zonegran and then Keppra XR and now I am being weaned off the Keppra XR and on to Keppra 1500 mg. I found out that the Keppra XR wasn't worth the high prica $318 a month. Now I am paying $60 a month with the regular Keppra , that is 2 750 mg tablets a day. My itching has gone down a little. I dont know if it was the Keppra xr that was causing the itching or not.

[seizingbeauty]

Dilantin (walking zombie rash), Tegretol (headaches/migranes), Epival (shakes) + Rivitrol to control the shaking (depression) was put on an anitdepressant and something else and told the Dr. to "GO Bleeep Yourself I'm not a bloody guinea pig",many years no drugs, now Keppra 2000mg (not fully controlled)+ Topamax 100mg(weight loss, tingles, metalic taste)

[stilldancing_98]

I have never heard of Depakote starting myoclonics. That is very interesting.Maybe she has been on it to long.I know lamictal can cause them., and help them.Darcness, keep me up on that will you? I have nocturnal myoclonics to. Depakote is a very scary drug.I was on it when I was pregnant.

[vtsammy]

Hi Stilldancing..why is Depakote a scary drug for you? I currently take a combination of lamictal, depakote and keppra. Now by myclonic seizures, are you guys referring to your fingers sometimes shaking a bit? Not alot, but just slightly. And for the rest of the people out there...haev you had problems w/ your body growing a tolerance for certain medications so they no longer work for you even after increasing the dosage? I had that problem w/ Lamictal but now since I'm on other drugs I've been seizure free for the most part. I'm just concerned that my body may become tolerant to the medicatino w/out me knowing one day while I drive and I may have a seizure. Any input would be appreciated. Thanks.

[stilldancing_98]

No. I was with a doctor at a time that did not check my levels. And every time I had a seizure He just upped it. Then I was told I could not get pregnant. ta da!I had just changed Dr.s we were about to get me off of my dep. and I was pregnant. It did terrible things to my son. I took lamictal too and it caused more myos for me than stopping them nocturnaly. It may be good for you really, but for me it did not work.If it works for you YEA!!

[lureswinger]

the first 6 years of my seizure life i was put on valium and epilim,
when i was 18 i was sat talking to a social worker and i remember saying to him " i dont know whats happening here i can see what looks like cathrine wheel fireworks going off "
I woke up a week later in the sheffield hallamshire hospital
while in hospital the neurologist asked me "who the hell put you on vallium and how long have you been on it"
when i told him his reply was "well he wants striking off putting anyone on valium at that age"
thats when i was put on tegratol retard and epilim

[dumbspouse]

My wife has been on Dilantan, Lamictal, and Tegretol. She's been off the Dilantan for 10 years. This new doc we saw in OKC was wanting her to start taking Keppra since we are trying for kids.

[Inaara]

Depakote and Topamax. The way they keep trying to push the depakote back on me, though, it does make me wonder if they get some kind of massive discount from Abbott Labs, teehee (I do know the military does have a contract - or did have one when I was still medical - for laboratory supplies and equipment, because that was what we used in the lab, Abbott & Kodak).

[stilldancing_98]

I am sueing Depakote makers for when I was pregnant on it. There were so many things that went wrong and it was not ok to be pregnant on it yet.

[dumbspouse]

My sister was on depakote for depression. I hear it's some nasty stuff.

[stilldancing_98]

Yes, it's suppose to be good for moods. But there are other things. It is Nasty stuff and if you are on it to long it can do damage to your liver. it did me.

[Jackson]

What type of damage did it do to your liver? The reason I am asking is because I am on dilantin and keppra. The neurologist wants to take me off dilantin because of the liver. I would like to except that it meens bumping up my keppra and I do not know if I like that to much. But if there is a chance of liver damage then I might.

[Inaara]

Yes, it's suppose to be good for moods. But there are other things. It is Nasty stuff and if you are on it to long it can do damage to your liver. it did me.

Personally, I think the stuff is Satan in the form of a little pink pill, but that is solely my personal opinion.