Well, I am new to this board. I used to post on BT but have been off of meds for 3 years. Recently a whole host of things has caused my seizures to return and I am back on Zonegran.

My doc is having me double once a week on the dosage which seems pretty quick.

Last time I took this half of my hair fell out and half of my body melted off.

Hi bams, nice to see you here too.

Hey Bams and welcome!

My doctor will double mine every 7 days, too. I lost hair with Depakote, but haven't tried Zonegran. I'm on Lamictal now, but it's just my 3rd week. Had an increase, but I forget to take my meds on time more often than not.

By half of your body melting off, did you mean like a rash or skin loss? Did they make sure you're not allergic or have the tried something else?

I'm sorry about the seizure return, that always stinks.

No I mean like 60-70 pounds!

I was on lamictal and struggled with that drug for a couple of years. I just lost too many words on it. I hope you tolerate it better. It is so odd how these pills work so differently for different types of people.

Ummmm - I'm on Zonegran / Zonisamide, but I never lost that
weight, maybe 10 pounds tops, but if I lost that much weight,
I'd have to rename myself to Invisible Woman.

Exactly what do you mean by "doubling" of the Zonegran?

I am currently on 500 mgs Zonegran / Zonisamide daily along
with another AED.

I mean that I take 100 mg for 7 days, then 200 mg for 7 days, then 400 mg for 7 days, then 500 from then on after.

i have a technical job. this seems like it might be rather difficult.

Oh, hah. I feel kinda stupid now. I had an awful visual of your skin melting off! I sat there thinking, "And here I complained about a mood swing." lol

Anyway, I'm underweight as it is, so I doubt they'll ever test me out on anything that may cause my losing weight (around 100lbs and will be 30 in a couple of weeks). That sure stinks, though. Lamictal seems to be different so far, I lose my appetite then gain it back with force. So I'm either starving or not hungry at all. I also had an aura increase, where you kind of hang there without having a seizure (which at that point I'd rather just have one and get it over with than hang for 3 hours).

Have you asked them if you could try something else?

I felt like that on lamictal. I get myoclonic jerks and i went a year feeling like I really really needed to have one and just couldn't. It made my absense seizures stop but by making me permanently absent really. I was a zombie.

I think that the medicine will be fine in the end. I just think it is funny. If a doctor was prescribing medicine for anything else those side effects would be unnacceptable but in the world of AEDs just losing your hair and all extra weight means "tolerated well".

LOL.