Zonegran

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Anyone here ever taken Zonegran? If so, can you tell me a little about it? did you like? side effects? Can this drug be taken alone...as a mono therapy?
 
I was on Zonegran for monotherapy, for about 7 months. It's called the "Supermodel Drug" because it makes you skinny and dumb (no offense intended to any of the supermodels here at CWE). I found that was the case for me -- I had problems with finding words -- I couldn't think of "post office" for instance. Zonegran works as an appetite suppressant. Not only was I not hungry, my stomach felt pretty sore all the time, which in turn made it even harder to eat. This gave me low blood sugar, especially in the mornings, and I started to have secondary side effects related that -- moodiness, depression, dizziness, etc.

This all happened very gradually, but when I started to snap at people around me (I'm usually very mellow and laidback), I realized that the Zonegran had become a problem, especially because low blood sugar is a seizure trigger for me. I was waiting for my regularly scheduled appointment with my neurologist to ask to change meds, but my brain couldn't wait and I had a big ol' tonic-clonic. The post-ictal period was especially long and unpleasant because Zonegran dehydrates you, and in the confusion afterwards, I was told by my neuro's office to go ahead and take a second dose right away, plus I was too zonked to drink a lot of water the way I would normally do. I ended up extra-dehydrated, and went to the ER twice to get fluids via IV.

Zonegran is related to sulfa drugs, so if you're at all allergic or sensitive to those, it's not the drug for you. In addition,you shouldn't eat grapefruit or drink a lot of grapefruit juice while on it.
 
Speaking as a Super Model myself:roflmao: I accept your apology :bigsmile:
 
A bunch of the AEDs affect both memory and appetite, so "Supermodel Drug" is probably a common nickname...
 
And all this time I thought 'skinny and dumb' was from the Lamictal. So its the Zonegran that is doing that to me (I am taking both, 600/300mg) all this time. It's so frustrating - I have gone back to school, and I am in a field where it is expected that you should be able to respond quickly and intelligently, but when I am asked anything... it doesn't matter how recently I was reading about it... I go to open my mouth and nothing comes out. I feel like such an idiot. It's like I have to read things so many more times than other people just to pound it into my brain enough that I can recall it when I need to.

Also, when I first started at the school, I told the assistant dean about my disability, and he knew nothing about it, which tells me that no one with same, had ever approached him with the matter before. Likewise, with the disability assistance center, they could not remember anybody with epilepsy ever asking them for assistance. I do feel a little bit like a freak there. So the Zonegran gave me my sweet GPA. sarc/off
 
zonegran

I was on zonegran but I don't remember anything about it. Don't worry though, it's not like topamax.

As for the skinny and dumb...

I was really sick of medications affecting my cognition, I've worked with my doctor a lot on taking medications that don't affect my cognition. If you notice any dumbening go to your doctor right away, you don't have to live with that, you have to live with seizures. Keppra, if you can tolerate it, doesn't affect your cognition. That's what I take. I still don't know what to do about the mood swings though. (laughs crazily)

Oh, and I had a lot of trouble on lamictal... I was taking a lot of it, it was the first drug I tried, and the neuro I had at the time, not my current one, just kept ramping it up. My cognition was horrible. It really hurts when you're an honor student. Sort of like, "My brain powers! Diminished!" But at normal doses I think it's okay. I was taking so much of it, I had a bunch of it around the house, and I ended up giving it to a friend who has epilepsy but was having trouble with insurance. She's a writer from France, she was like, "So much lamictal!" It was funny.

Good luck, I don't remember anything completely horrible about zonegran.
 
Keppra - if it had controlled my seizures maybe - but my family could not take the irrationality and rage issues and still no seizure control. I think Zonegran has reduced my partials, it's so hard to tell which meds do what now though. And yes, I am no honor student. Again, I don't know which drug to attribute that to.
 
Ah Keppra! My favorite new AED drug which has turned me into Mr. Potatoe head! I can't remember words, names, and heaven forbid someone ask me a question about something we discussed a week ago! I'm guessing people at work are getting used to the blank stares as I try to remember what they are talking about! I'm in agreement with epileric!
 
Worth the risk?

Hello.
So I am currently taking Keppra 750 mg twice daily along with 25 mg DHEA suppliment once daily and 100mg 5HTP twice daily.

I had my 2nd resection done this past march on my right Anterior temporal lobe and my right parieatal lobe. And the surgeon also did a procedure on my right frontal lobe to stop the spread of seizures to my motor fucntions.

So I haven't really been myself since these second surgeries. Unlike my first surgery in 2008 which was a right temporal lobe ectomy in which my personality wasn't affected at all infact I felt myself much happier. Compared to this time where my quality of life is essentially a 3 on a scale of 1 - 10.

After my second surgery the tonic clonics and the complex partials stopped completley for about 2 months but then at about 3 months out I have begun to have simple partials now instead.
Basically these are really annoying and I can go about my normal business except I still can't drive according to PA law so I can't really take care of myself. Anyways. I saw my neuro yesterday and his solution to my current problem is to switch drugs.
I dont really want to do that though because i've really tried all of them before and had the best success and least side effects from keppra (Ive taken it for almost 13 years).

He wanted to put me on zonegran because of the depression iv'e been having and mitigating with the 5htp which he thinks is probably enviromental in conjunction witht the side effects of the keppra.

Thing is though iv'e never really had these symptoms from keppra after my first surgery so I don't know if it's really the drug or what. I mean I defintely felt alot better one day I missed a dose but I am reluctant to switch to a new drug especially since it is related to Topomax and I turned into a literal zombie when I took topomax. Im also highly allergic to sulfa drugs which I discovered Zonegran is part of.

In my life ive taken
Phenobarbital - not available to adults - made me fat
Dilantin - Didn't even control anything
Tegretol - bad mood side effects
Keppra - inital keppra rage but adapted to it over a long period of time
Vimpat - couldn't think
Topomax - zombie
Depakote - can't even remember but it wasn't good.
Lamictal
Valium
Neurontin

So I don't really know if it is worth the risk at this point. What do you guys think?
Cheers Rourke
 
Hi Rourke, welcome to CWE!

Im also highly allergic to sulfa drugs which I discovered Zonegran is part of
Does your neuro know this? With the sulfa allergy you should definitely give Zonegran a pass.

5HTP can helping control seizures in some people, but can cause them in others. You might want to go off of the 5HTP to see if that helps.

Do you keep a seizure diary? A diary can help you look for triggers. The ideal scenario would be if you were able to identify (and avoid) any triggers.
 
I've been on the generic of Zonegran - Zonisamide, since May of 2011, 400 mg daily as an add on to my Depakote ER 2000 mg daily.
The results of going on the drug caused me to lose about 80 lbs., I had trouble sleeping, so was on Trazadone for about a year, then had to go off that as it didn't work anymore, so tried different sleep aids none worked until I recently came across Cymbalta. It is used for anxiety, depression, which I was dealing with, and it helps to for back pain.
I still have issues with reading, comprehension, getting the right words out, and I am constantly thirsty so I drink lots of water, which is a must on it.

Terri
 
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