Hi I have been diagnosed with epilepsy 18 years ago. I have been relatively seizure free with a combination of Dilantin and Phenobarbital. Recently for some unknown reason I had a seizure while driving. Fortunately no one was harmed. My doctor wants to phase me into taking Zonegran 100% and slowly take me off the other two medications. Does anyone out there have any experience with Zonegran? It is a new drug that has just recently won FDA approval in the beginning of 2000. However, it has been used in Japan since 1989. Your reply would really help. Thanks.

Ajay

Hi! I was diagnosed with epilepsy 4 months ago and have been on Zonegran for 3 months now. I am not taking it with any other drugs. At first I did notice some strange side-effects...drowsiness, lack of coordination and what I can only describe as a slowed thinking process. I feel a lot better now. And the Zonegran is working. Before I was having 5-6 partial seizures per week and have been seizure-free since mid-January!! Definitely drink lots of water, at least 64 oz. per day to avoid kidney stones. (They are a common side effect.)

Hope this helps!

Thanks for your input! At first I did notice the coordination problem and the slowness but over time does all of that go away? Or do you just get used to these side effects?

Hi Ajay! You're asking the exact questions I was a couple of months ago. The side effects, in may case, definitely decreased. I still experience them occasionally but they are not nearly as bothersome. For example, part of my job includes writing a 2 page summary of weekly news events for our website. Before the website this would take me about 30 minutes. For the first 2 months on Zonegran I'd struggle to get this done in an entire workday! Now I'm almost back to normal! So my anwser to your question is that the side effects you mentioned do decrease once your body gets used to the medicine.

It's nice to talk with someone else on this medicine. According to my pharmacist I'm one of a few in Houston on Zonegran!

Good luck!

Hi Bryce,
It is funny that you mentioned that about your pharmacist. I was speaking with my primary doctor and told him my neurologist is putting me on Zonegran. His response was what medicine? Can you spell it out for me? When I went to get my blood levels checked they haven't even developed a code for Zonegran. But as long as long as it gets the job done. I have been on Zonegran for about a month now and I really feel no side effects except the coordination. Hopefully this will make me seizure free!

Zonegran controlled my sz at 400 mg, but I couldn't tolerate the side effects of tinnitus, memory probs, weakness, fatigue, emotional volatility, and a funny taste in my mouth. There were no guarantees that this would pass, and other meds available, so I start phasing in Lamicatal this eve with my phenobarbital. I gave it a good try for 3 months.
Annie http://www.healthboards.com/ubb/confused.gif

My son has been on Zonegran (in addition to other drugs) since 12/2001 and is doing well as far as seizures but has lost his appetite and is losing a tremendous amount of weight. Since my son is mentally disabled and unable to relate the side effects of this drug, has anyone else experienced appetitite loss and does it eventually go away?

[This message has been edited by NancyR (edited 04-18-2001).]

My grandson, Brandon, was on zonegran---at that time 10mths old....he took it 100mg...for 3 months...we were told not many side effect...watch for rash blah,blah,blah...well NOW he can not sweat...the zonegran apparently shut down the nuro-transmitters that tell his glands to sweat...he isn't taking zonegran in 4 mths and he still doesn't sweat...don't know if he ever will again...one of the side effects we found out later(and not by his neurologist) was possible heat stroke...due to the reduced ability to sweat...also, the drug is NOT FDA approved for anyone under 17. The drug company told the Nuero that it wasn't the zonegran....the encridolist and the dermotolgist both found 3 articles (2 in Japanese) where small children stopped sweating...the one article in English was on a 2 year old that after a few weeks started to sweat again...so far not my Brandon, but, we will keep hope'n. PLEASE beware of this drug...Brandon's seizure control wasn't much better on zonegran and now we have other complications....he's on tompamax now and doing much better on his seizure control. We are also trying to alert the drug companies as to what happened with our young man. Good luck to all Susan