Fluctuating Topa symptoms - Epilepsy Message Board

Travis from MN · 08-15-2007, 08:02 AM

A few weeks ago, after Four weeks on a lowered dose of Topamax, my eating had grately picked up. Now it semed to have gone back down to previous :/ .

Has anybody else had minor reductions in Topamax, held there for over a month and eating improved then returned to the "impaired" state it was at before?

Thats the best way I can think about describing it. I was eating 2 Lbs of meat a week + other foods (compared to almost nothing before!). This was a huge increase in my food intake from one meal and snacks to two meals PLUS.

It is just the last 4-5 days I seem to be dropping in eating I'm getting worried again. If that bump was just temporary

. Topa may be getting hold again. I'm having levels drawn this week so I'll know shortly where Topa sits... if that 50mg drop helped lower my levels.

--Travis

TopamaxKillsMe · 08-15-2007, 03:57 PM

Just the fact that you can intellectualize a conversation so well on topamax is baffling to me. I experienced so many wacky symptoms while on that stuff. now weaning, i have ringing in my ears and join pain ---symptoms I never experienced while at my (what's that word?) dosage.

Definitely talk to your doc about what you are feeling and see what kind of feedback he offers. What kind of levels do you have drawn? I was under the impression that topamax was a drug where you didn't have to get levels checked.

Travis from MN · 08-16-2007, 09:31 PM

I can tell you my Topa levels had been holding at 10.5 at 400mg/day Unsure if we did levels when I was at 450. If we did they held at the same for results for what I have in front of me from the lab.

I'm one of the over educated when it comes to my meds and levels. What the ranges are and what **my** normal results should be. When (last test) the Teg level came back in the 10's (almost 2 points high) but the Free Level was only 0.1 higher than normal we paid attention to that (free level) for the results and viewed Teg as normal.

Not sure if they narrowed the definitions of Topa's range. In the past it HAD BEEN published at 2-25. My prior doc told me my therapy on Topa was about as high as it should go (for me? not sure what that statement could mean).

Topa has been a wildcard for me. It works well in controlling the seizures, but the sideFX of appitite supression are what annoy me. It's one of those, debates do I want to go back in the trenches for more years, or deal with this one side effect and have my seizures controlled. I'm at the point, for now, where I'll deal with the eating issues due to it controlling the seizures.

That was why I changed Dr's when I lost my last one (that I liked so much!). The first new one wanted to (suggested) try changing my medication therapy when I was (am) well controlled. Yes I'm on three meds, and I'd in the long distance like to be on less. However, why rock the boat if I am not toxic and controlled.

I've never really had the "dopamax" symptoms of it after titrating to my initial dossage when first starting. Lucky I guess.

I'm also picky on levels. It had been over a year since levels and we had made two adjustments. I was nearly demanding levels to see where they were sitting. I'm VERY active in my therapy. I want to know whats going on in my system.

--Travis

TopamaxKillsMe · 08-17-2007, 05:29 AM

It worked for me w. the seizures but what made it so unbearable was the memory/cognitive/ADD type systems. Literally felt unbearable and like my life was in a downward spiral. I also experienced insomnia, headaches, eyepain plus the appetite suppression. If all you're feeling is appetitie suppression and this is working for your seizures then you are one of the lucky ones and you might want to stay on it. Unfortunately, I think we're a long way off till that "perfect medication minus any side effects" is on the market for epileptics.

Travis from MN · 08-17-2007, 03:22 PM

Very odd for it to *cause* headaches when Topa is also used to treat migraines. A friend of mine was placed on it over the narcotics she had been on (that make a person drowsy after administering them). I gave her the full warning on it and amazingly her Doc had warned her in full detail. Suprised me that there are a few docs that warn in depth (from past experiences).

I know meds are not that lucky yet. It's somewhat like fly fishing. You don't know if it will be a pan fish or a large mouth bass.

--Travis