Anyone else take Zonisamide?

[chad273120]

Two weeks ago I started on 100 mg a day of Zonisamide and I felt calm and great with no tremors!, but then I started to get used to it so I doubled it like instructed. Then I had to take 1 in the morning and 2 at night to have my dosage at a total of 300 mg a day but now I feel like complete crap and feel like I used to. Tremors are back and I can have the occasional complex partial seizure like I'm used to

 

[Nakamova]

I took it to control my tonic-clonics. But it suppressed my appetite and irritated my stomach. I couldn't eat, and since low blood sugar is a trigger for me that was a big problem: Zonisamide ended up triggering a a nasty seizure. Switched to Lamictal...

One thing to remember is that you need to drink a lot of water when you are on it.

Have you tried taking magnesium for your tremors? It might help.

 

[chad273120]

I have not tried taking magnesium for my tremors, but i should keep on top of my water. But I feel like I'm actually more hungry than usual on this medication and if I don't eat I can have a complex partial? Mine are mainly stress/exhaustion triggered.

 

[KarenB]

Jonathan just started this med about 3 weeks ago -- he started at 50 mg and now is at 100 mg. But he also started Diazepam at the same time, so sorting out the side effects is a little tricky.

At any rate, the biggest side effect we've noticed (probably from the Zonegran) is extreme lack of appetite. And this the kid for whom mealtime is usually the highlight of his day, and gobbles down his meals in about 10 seconds.

We were giving him the Zonegran with his breakfast and supper, but now are waiting til he finishes eating, and then give him the med -- with a full cup of water.

As Nakamova mentioned, the water is important -- not only to keep it from irritating the gut, but also to prevent kidney stones and metabolic acidosis (both side effects of Zonegran).

If you're feeling like crap, you might be experiencing a little acidosis. Make sure your neurologist is checking your CO2 levels (bicarbonate) for that. You might find that a little baking soda will help.

 

[chad273120]

Thank you very much for the feed back, I don't feel very good right now that's why I posted, it only started once I got on the biggest doses, I've never been really on top of my water drinking, since i'm an 18 year old!

 

[Nakamova]

If your neurologist hasn't checked your bicarb levels as KarenB mentions, he definitely should. More info here: http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm

 

[KarenB]

Because Jon is already on the Ketogenic Diet he takes Cytra-K (potassium cytrate) to head off kidney stones and acidosis, and now that he's on Zonegran, his' dose has been upped to 1 1/2 packets (from 1).

However, a lot of medical centers use just plain ole baking soda for the same thing.

 

[Paint Master]

Zonisamide vs Zonegran

I was taking 200mg Zonisamide twice daily since September 2011 up to August 15, 2012. At which time I was switched to "name brand" Zonegran. When I first started with Zonisamide I would have stomach problems in the morning, @ 06:30, but I shortly found if I ate cereal soon afterwards it would settle my stomach. I am sure to eat something every morning and it continues to work with no upset stomach problems. I take my other 200mg @ 18:00 which is after my supper time and again I do not seem to have any upset stomach problems as long as I take my meds on some food. Drink plenty of fluids during the day as these meds will dry you up. I found water is good but not sufficient, Gatorade once or twice a day helps a bunch. Everyone is different and I am older but you must not dehydrate. The change to Zonegran has not made a difference other than possible memory. I am also taking 100mg of Lamictal with the Zonegran twice a day. I hope this helps.

 

[KarenB]

I would think that the potassium and chloride in Gatorade would be helpful in regulating tendency to acidosis with Zonegran. It's high in sodium, however, which might be an issue with kidney stones (a Zonegran side effect). Not sure, just thinking...

One side effect of Zonegran is that some people who take it don't sweat (this also happened with Jonathan on Topomax), so you have to be really careful not to get overheated.