Hi, I'm new here

[linda_b]

I just stumbled on this forum. It's great to read about other people's experiences. I don't know anyone else who has epilepsy let alone in my own situation.

I was diagnosed about 2 years ago at the age of 51. I've been seizure-free for a year now, but it took ever-increasing doses of Tegritol, and by the time I got up to 1100 mg, I had a lot of trouble concentrating, multi-tasking, remembering things, and was constantly fatigued. My friends and colleagues described me as "zoned out" much of the time. This made it very difficult to perform my management job, so I've been off work since spring. Oh yes, and there was that 30 pound weight gain, too. Yuck.

My neurologist has me doing a gradual switch to Topamax. I'm at 100 mg of Topamax now, and down to 400 mg of Tegritol. I feel more energetic, and alert, for sure, (I'ts nice to have my brain back!) but since dropping below 600 mg, I've started to feel the pre-seizure auras, too. I also feel jittery, with knees bouncing, fingers tapping, a lot of nervous energy, which is not my natural personality at all. I'm wondering if it might be a side effect of the Topamax. Has anyone else experienced that with Topamax, and if so, did it go away in time?

Linda,
British Columbia, Canada

 

[Bernard]

Hi Linda, welcome to the forum. :hello:

Everyone reacts to drugs differently. Several forum members have described bad topamax experiences, but you have to listen to your own body.

From what you described, I'd guess that the seizure control is not sufficient with the current meds/dosages.

 

[Birdbomb]

Welcome linda_b

You are in the same boat as about 3,000,000 other people in this country. Epilepsy isn't all that uncommon, just not vocalized because of the public ignorance.

It's great you are able to keep your seizures under control. Those other side effects are often controled by adding more medication. But the heart of this site is alternative treatments.

Why not begin a diary of everything you eat, and when these symptoms occour and see if they aren't somehow related.

Maybe it's something simple like cafeine or white sugar or wheat that may be bringing them on.

 

[Bernard]

Those other side effects are often controled by adding more medication. But the heart of this site is alternative treatments.

I'd like to clarify that Stacy and I personally are interested in persuing alternatives, so I post a lot about them. That doesn't mean that discussions about traditional, drug based therapy are unwelcome or discouraged.

Something like 30-40% of people diagnosed with epilepsy do not find seizure control with drugs. I don't know what percentage of the 60-70% that do respond to drugs find the side effects untolerable, but based upon what I see around the internet, it's significant. If I understood Linda correctly, she is in that group so far.

 

[Elisa]

Linda,
give the Topamax some time, you may be feeling all of these side effects because you are on the two AEDs togerther. When you're off the Tegretol all togerther you may find the jittery feelings go away.

Although just as a side note.... why did your doctor pick Topamax? If your complaint is...

Quote:
I had a lot of trouble concentrating, multi-tasking, remembering things, and was constantly fatigued. My friends and colleagues described me as "zoned out" much of the time.

Topamax is well known for messing with cognitive skills, and wouldn't be on the top of lots of peoples lists as AEDs to change to, if having trouble concentrating.
Lamcital and Keppra are much better when it comes to cognitive skills.

 

[POSITIVEPERSON]

Hi Linda: Welcome to the board I am going on 52 yrs old have epilepsy since I am 11
yrs old . 24 yrs controlled than had years on and off . One year and half half go ran out of meds started on homeopathy, 2 weeks ago added the gard diet to be able to get rid of the last 25 mgs of mysoline.

Have any questions about diet or homeopathy ask away.

Riva

 

[brain]

:hello: Linda!

Epilepsy is a lot more common than
you realize with now more than 3+
million people having it. And as far
as the medications goes ~ everyone
reacts to it differently. It takes time
of trial and see how it goes. Patience
is the key. I've been on various meds
for years. I was born with it, a genetic
issue which is progressive in nature.

WELCOME TO THE CWE FORUM BOARD!