Anyone taking Zonegran?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

skyfire322

skyfire322

Stalwart
Messages
335
Reaction score
2
Points
68
My neurologist is weening me off the Keppra, and slowly introducing 150 mg of Zonegran. I've never heard of it before, and have read that most side effects are minute.

Any success/horror stories with Zonegran? I know everybody's body chemistry is different, so what may work for one won't work for another. I'm just trying to get my "feelers" out.
 
Zonegran was one that didn't work for me. I ended up more than a little psychotic. By that, I mean I was constantly enraged, I thought people were trying to hurt me, I was having hallucinations, and it took me a while to realize something was "different." It was scary.

That said, what I experienced isn't a common reaction, and I seem to be really sensitive to drugs which can have those effects. For example, I absolutely refuse to even try Keppra. The rage attacks I hear about scare me too much.

There are people who use Zonegran and feel just fine. I've talked to a few people who use it and feel great. Like you said, everyone is different. Hope it works out for you.
 
Hey there, I've been on Zonisamide the generic of Zonegran since May of 2011 & I really only had a few things going on with it. First off you have to drink lots of water with this medication, Second: I didn't sleep hardly at all at night, which, my Neuro prescribed Trazadone to help with and for a year it did, until my body started not liking it any more, and third: I lost a lot of weight.
As far as the sleep problems, I finally was able to get on Cymbalta, it helps with the mild depression, any anxieties, and because it is a non narcotic medicine it helps with my back pain as well. Other than that, I haven't had any other issues, but I recommend always researching your medications, always!
If I can be of help to you in any way please feel free to write me, alright?

Terri Tripp
 
Hi Skyfire, I'm starting to take Zonegran this weekend. From what my epileptologist told me, it's similar to Topamax (nicknamed Topamax Lite) but with less side effects. I read the SE profile and it sounds similar to Topamax, such as cognitive difficulties, kidney stones, and inability to sweat. I'm switching from Topamax to Zonegran after trying to go med-free (I lasted a whole week and a half lol) and from what I've read, they're in the same family. It's a sulfa-drug, so if you have a sensitivity to sulfas like some people do, let your Dr. know. It's supposed to work well for those with intractable E with mixed seizures.
 
Skyfire, I switched off of Depakote over 2 years ago onto Zonisimide. Depakote was working with great efficacy at controlling my Grand Mal and myoclonic. But after 30 years, my body was not tolerating the side effects as well.

Now, I'm on Zonisimide and I'm not all thumbs up about it. First, some myoclonic head shakes have returned. So, the efficacy was not as great as Depakote. Also, their is a weird numbing-like, tingling going on in my mouth. This is constant. All this for a so-called safer drug. It's a mixed bag.

I'm still on it and hoping for better days. And I can see those coming...but not from big pharma. That being said, and not to hijack this thread, I'm in California and was able to track down CBD rich tincture. It's made a big difference in resolving these myoclonic issues. Problem is, you can hardly find CBD rich tincture in effective doses that are consistent. The Realm of Care people in Colorado have a pretty consistent strain, as everyone has heard by now.

How about that -- plants from the backyard making our lives a lot easier. :ponder:

Good luck with your transition to Zonisimide. Drink lots of water.
 
Just had to get off of it. I was using it in combo with topomax. First, the combo didn't help that much but mostly made me extremely depressed in a way that was so unlike myself. Negative about everything. And it seemed like I had no reason to be either. When I started to question why I was here, I called the Dr. to get me off the drug. I felt better right away. Even my friends noticed the difference. Every drug effects people differently. This one was not for me. Yes, drink water!
 
Hi, Skyfire - I'm taking 400mg of Zonegran. So far, I've had an awesome experience. I've tried Lamictal, Topamax, and Keppra before this, and they did not work out for me.
 
Well, one week in and the only thing I've really noticed is that I wake up feeling like a train wreck. I get about 8 hours of sleep, but it feels like I only have gotten 3.

I have been drinking at least two to three liters of water per day. Why drink that much?
 
People who take Zonegran are at risk of developing kidney stones. That's why you need to make sure you drink plenty of water while you're on it.
 
Zonegran update: It's been working pretty well! I haven't had any activity whatsoever. Not even tremors or auras. The only thing I have noticed is that since I've upped the dosage to 200 mg, I'm starting to become sleep deprived. About 4 or 5 hours of broken sleep. Not sure if it's the medicine or if it's just my new work schedule (they switched me from second shift to first shift).
 
Skyfire,
Like I mentioned earlier, the meds did cause me not to be able to sleep at night. My Neurologist put me on Trazadone, and for almost a year, it did work, then it stopped. I tried all sorts of meds for sleeping but none worked. Then, I approached my General Practitioner about this Cymbalta I heard of, well it is working wonders. Maybe you should look it up? It couldn't hurt.
Terri
 
Zonegran update: It's been working pretty well! I haven't had any activity whatsoever.
Click to expand...
That's great news! Keep an eye on the sleep problems; if things don't even out after a while, you'll have to consider whether the sleep deprivation is an adequate trade-off for the seizure control.
 
You must log in or register to reply here.
Back
Top Bottom