Topamax + Zonegran

[bams1414]

Hi all. I am new to the board but old to epilepsy!

I have been off of drugs for several years now and it is time to go back to the doctor.

I have an appointment on Monday and I imagine that she will put me on the same as before which was topamax and zonegran.

I was curious as to if anyone else took these two together? It worked really well to control my seizures but I got very thin very quickly.

I couldn't really find anywhere where it is a recommended treatment, and someone mentioned that they weren't "approved" to be used together whatever that means.

Any input would be great!
Thanks!

 

[Bernard]

Hi bams, welcome to the forum. :hello:

Stacy (my wife) could not tolerate Topamax at all. She seized worse the only time she tried it.

I don't remember her ever taking Zonegran, but some member here have complained that it upset their stomachs.

I don't recall seeing a post from anyone claiming to take both of those at the same time, but everyone has different tolerances for AEDs and one person's perfect drug (or drug coctail) may be another's nightmare. It seems like the epilepsy treatment game is really about trial and error with the drugs, so if the combo worked for you in the past, it may work again.

When drugs are approved by the FDA, they are usually approved for specific use(s) - ie. monotherapy (to be used as the only drug therapy for seizure control) or adjunctive use (to be used as a secondary drug in addition to other specific drug(s) or drug class(es)). In the real world though, I think doctors are pretty lax with the rules and willing to try the drugs in whatever combos they think may work.

Approved use for Zonegran (.PDF file)

Approved use for Topamax (.PDF file)

It doesn't appear that the FDA has tested the combination of the two from what I see on those pages.

 

[BIGMAN131307]

:evil: Because topamax and zonegran along with keppra I had severe stomach and groin pain. Those meds damaged my insides to the point where I had to have surgery.

Now I'm on Trileptal & Lyrica, and without a gall bladder.

 

[Bernard]

Hi bigman, welcome to the forum. :hello:

Ouch. What kind of damage did the drugs do?

 

[BIGMAN131307]

Hi bigman, welcome to the forum. :hello:

Ouch. What kind of damage did the drugs do?

Thx for the welcome. Like I stated those medicines caused me severe stomach and groin pains. I couldn't eat like I did prior to taking them. Often the thought or smell of food would cause me pains. My neurologist changed my meds several times trying to fix the problem.

But by the time he put me on a Trileptal & Lyrica mix, it was too late. My gall bladder was shot. I had it removed about 4 months ago. I've been on a string of meds, and med combos.

Here is a general idea:

As a Child:

Phenobarbital
Tegretol

As an Adult:

Tegretol
Tegretol & Dilantin
Tegretol & Neurontin
Tegretol & Lamictal
Dilantin
Trileptal & Dilantin
Trileptal & Depakote (severe stomach/groin pain)
Trileptal & Topamax (severe stomach/groin pain)
Trileptal & Zonegran (severe stomach/groin pain)
Trileptal & Keppra (severe stomach/groin pain)
Trileptal & Lyrica (bloating / weight gain)

 

[bdkelly]

Hi. Sorry to intrude on your thread. I don't get how to start a new one yet. Because I got THE rash last week from Lamictal, my neuro today started me on Topamax. I read some pretty crazy stuff at crazymeds.org. Have any of you had these side effects? Jarod said you either love it or hate it. I'm just trying to figure out what I'm getting myself into. Any responses?

Denise