Anyone on zonisamide?

[ekalina]

My epileptologist is weaning me off Lamictal and I have been started on zonisamide, the generic Zonegran. I've been on it for about a month. So far I've noticed I get really irritable relatively easily (and stupidly). I've looked up the side effects but I was wondering if anyone had any real life experiences. What can I expect with this med? I did not tolerate the generic Lamictal (lamotrigine). How good is zonisamide?

 

[kostareyna]

I din't take zonisamide but i read real experiences of other people and the bad thing i can say about it that it works just like topamax and therefore it got similar side effects.The good thing i can say about it is that usually when people can't tolerate topamax they switch to zonegran because it works in a similar way but they got much milder and less side effects.Of course everyone reacts differently but usually that's how it goes.If the drug will help with your seizures but you won't be able to suffer the side effects,try switching to topamax and see what happens since it work similary which will mean you will have similar control against the seizures.

 

[Nakamova]

Hi ekalina --

I was on Zonisamide, and it made me irritable too. I'm ordinarily a very mellow person, so when I got cranky it was clear the Zonisamide was at fault. Zonisamide is an appetite suppressant, and was hard on my stomach, so I became irritated in part at least because of low blood sugar. Low blood sugar is also a seizure trigger for me, so I did eventually switch off of Zonisamide (to Lamictal).

Since I was on it, they've come out with a warning that it can cause "metabolic acidosis." I don't know if that's what was happening to me, but I do know that my stomach was so acidic that on my own I was searching for foods that were antacid/alkali, and I was ready to give up on Zonisamide after 7 months. Your epileptologist should have tested you before you went on it, and after, to make sure it's not affecting you:

The FDA recommends that healthcare professionals measure serum bicarbonate before starting treatment and periodically during treatment with zonisamide, even in the absence of symptoms. If metabolic acidosis develops and persists, consideration should be given to reducing the dose or discontinuing zonisamide (using dose tapering), and modifying the patient’s antiepileptic treatment as appropriate. If the decision is made to continue patients with metabolic acidosis on zonisamide, then alkali treatment should be considered.

The above is from: http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm

One more thing -- Zonisamide also can have cognitive side effects. When I was on it, I couldn't remember vocabulary, was slow coming up with certain words. That went away after I went off of it.

Best,
Nakamova

 

[Becci90]

My epileptologist is weaning me off Lamictal and I have been started on zonisamide, the generic Zonegran. I've been on it for about a month. So far I've noticed I get really irritable relatively easily (and stupidly). I've looked up the side effects but I was wondering if anyone had any real life experiences. What can I expect with this med? I did not tolerate the generic Lamictal (lamotrigine). How good is zonisamide?

Hi Ekalina,
I'd love to be able to give you the side effects that I got from Zonisamide but I was only taking it a little while before they took me off it because I got a rash. Although they told me because it's relatively new they weren't sure what kind of side effects might occur. Sorry your having problems with them though.

 

[ekalina]

Yes, Nakamova! I'm having trouble with vocab! Last night I asked my husband what that thing with the big fire was (bonfire). It happens quite a bit, that's just an example.

I lost 4lbs almost immediately (but hey, I'm not complaining about that). A lot of labs were drawn while I was in the hospital a week before it was started, I don't know what all labs. I know they drew blood after each seizure to check prolactin levels while I was admitted.

 

[Nakamova]

I remember not being able to come up with "post office". I kept trying and trying, and the best I could come up with was "mail house".

FYI, Zonisamide is sometimes called the "Supermodel" drug -- because it makes you thin and dumb. Losing weight is a nice side effect for many of us, but be careful that you don't start losing too much, and that you are eating properly.

 

[Rockstar0777]

epilepsy

I know this is an old forum but oh well.

Ive been on zonisimide for probably 4-41/2 years now. Have had epilepsy since i was 13. Zonisamide along with many other pharmacutical drugs have many side effects. I experienced major weight loss from Zonisamide. My 8th grade year/Freshman year I weighed a little over 200. My senior year now, I weigh around 130-135. Pretty big drop aha.
I think also its easy to build up a tolerance to the drug. My doctor has neber known what triggers my seiuzes. A week before school started i have an extermley bad grand mal. And ive had 2 abcense seziuzes in the past two weeks. I also smoke marijuana. Theres known medical research that shows cannabis helps epilepsy

Nakamova i do agree with you also, sometimes thinking of a specific word to finish a sentance or something.
Heres a link that talks about some side affects, mostly the weight loss; htt.p://art icles.chicagotribune.com/2012-10-17/lifestyle/sns-rt-us-epilepsybre89g1s3-20121017_1_epilepsy-drug-side-effects-weight-loss[/url]

 

[Rockstar0777]

I'm also on 100mg pills and have to take 7 a day now.

Also I had to put a period in the HTTP and a space in the link so I could post it

 

[Sophieflude1]

My experience

It's funny I used to get really irritable when I was only on lamotrigine. I would get angry and the smallest things and sometimes cry cus I was so emotional but didn't want to be violent.
Since zonisamide that's happened once and it was much much more mild
When I have smoked w on lamotrigine (and zonisamide) my legs have become shaky, I was scared I would die of over-hydration if I had a drink, I couldn't talk and had throbbing/pins and needles in my brain :s
I have given up alcohol and wondered if I could start smoking w more instead but my side effects seem to match with what others have said when they're high so seems weed and lamotrigine go as badly together as alcohol :/
bad times.

 

[Suman]

Zonisamide worked to control seizures for my son, and boy it did come with very heavy side effects. My son who has autism, began to have strange fears, became irritable, depressed, and angry. We did not catch the side effects immediately, but it crept into his system slowly and stayed. He was on 250 mg of Zonisamide at that time.
Now he is on 50 mg of Zonisamide and 150 mg Vimpat and just began 10 mg Briviact, he's much better but not the same happy kid he used to be.
Make sure you drink plenty of water as this med is known to cause metabolic acidosis.
Hope that helps some.

 

[txtiger]

I know this is an old thread, but here is my experience for anyone who is considering Zonegran. It has been 15-16 years since I came off of it, but this is what I remember:

I think my neurologist at that time switched me onto it from Topamax, because I had extreme weight loss on Topamax. Anorexic-looking weight loss. I did not know until reading this thread that the two are related. That might explain why I was switched from one to the other. The main thing I remember was that my complex partial seizures got worse. My cognition and memory were pretty fuzzy during that period of my life, so I don't remember how long I was on Zonegran. I would guess maybe a year to a year and a half at most. It obviously did not work for me, but as we all know, everyone's reaction to medications is different.

Just my $.02 Maybe it will help someone.

 

[Elaine H]

Hi Ekalina I have been on Zonisamide for a long time, and I completely lost my appetite, even to the extent of loathing the thought of eating, and being around people who were. I was taken off of this med towards the end of last year, and OMG... I am now eating anything that isn't nailed down!!! It's not a bad thing really, and it's good to be enjoying life again, and I also feel and look healthier don't worry, you may be ok, we all have different side effects for the meds, and the most important thing is that it controls your epilepsy.

 

[seagull]

Why are they changing it on lamac myself just wonder if something up with lamac