Does anyone have any experiences with Zonisamide to share?

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Zara-Newman

Zara-Newman

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I am currently being changed from Topirimate to Zonisamide, and I have read up on it, but I was hoping for some first hand stories.

Anything would be helpful :)

I haven't been online for a long time, so I will just get to replying to my messages now. Xxx

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My doctor told me that topirimate and zonisamide have a similar mechanism of action. Not exactly sure what that means for you, just maybe something good to know.
I did not have a good experience with zonisamide, but I know some people do! There was one small plus - I lost most of the weight I had gained from Lyrica. :)
 
My doctor told me the same, I am not sure the plus of putting me on something so similar to the thing I am being taken off.
I suppose they are hoping that it is just different enough to help.

I think they have exhausted every other idea haha!

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Same happened to me, but the reverse. The doctor wanted me to try topirimate after I got off the zonisamide. I didn't understand why either, but I suppose that's why I'm not a doctor ;). Keep me updated on how it goes. I hope it helps!
 
Well I hope it does something, to be honest I quite liked topirimate, but he says this may be better!

I just hope I am not allergic to the tablets! I am allergic to colourings, it has been a real pain when it comes to medications.

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Actually, I was in your shoes several years back. I was taking Topamax and it was working great for my seizures and migraines. I suddenly developed a terrible side effect... I couldn't sweating. It was awful. So, my Dr stitched me to Zonegran. She called it "Topamax lite". For me, it had no where near the side effects of Topamax. It still worked for the seizures, but unfortunately, not so great for the migraines.

It just so happens, I gave been put on Zonegran again a few weeks ago. I have been having a little nausea, loss of appetite, feeling tired, not horrible, but I've also been feeling very anxious. I'm hoping this is will go away with time.

I hope you find success with the Zonegran!
 
That's unlucky because my doctor told me that it is also used as a migrane cure.
Thankyou for the help, I have never had any side effects from Topirimate except from bone thinning.

So hopefully since they are similar I will be okay. With everything else I always get all of the side effects. It is just a shame the topirimate didn't really help the seizures much x

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YMMV, but I had a bad experience on Zonegran. It's the only AED I've experienced cognitive effects with. It messed with my appetite, which in turn led to painful stomach issues and mood problems. I was on it for about 6 months and had just reached the decision to ask my neuro to switch meds when I had a massive seizure. (At which point I switched to lamictal.)

Because Zonegran comes woth the risk of metabolic acidosis, the FDA recommends that your neuro measure your serum bicarbonate before starting on the med and afterwards as well. See http://www.medpagetoday.com/productalert/prescriptions/13006
 
Did you get an appetite decrease or increase?
I could live with a decrease, since my lamotrogine increases it - it may even me out.

Thankyou for the link, I will make sure I get measured.


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It decreased my appetite. It's actually marketed as a weight loss drug in some countries. Also, sometimes referred to as the "Supermodel Drug" because it makes you thin and dumb.

Because I wasn't eating I got a very irritated (acid) stomach. Low blood sugar can cause all sorts of issues (including seizures for some folks), so if you're not eating as much it's important to keep an eye on your daily calorie intake and watch out for excessive sleepiness or confusion.
 
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I see, well at least it isn't another drug to make me put on weight! That's a plus.

I am pretty good with food generally, so I won't have to worry about too much loss.

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I am pretty good with food generally, so I won't have to worry about too much loss.
Click to expand...

That's what I thought, but I still ran into trouble. :(

I hope it works well for you, fingers-crossed.
 
Oh dear. Well, I will just have to hope that the weight gain factor that I got from the lamotrogine evens it out a little.

Or else I will have to be forced to eat a little extra cake - why me eh?

I will be sure to keep the group updated

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I read that was a side effect :(
Not many people have anything positive to say.

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Ah yes, I drink a LOT of water.
So that is one thing I can say I won't have to worry about haha!

Thankyou x

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Zara, I am off Zonegran after a 2.5 week trial. I believe I titrated up too fast, and I'm a little sensitive to meds. I was on it in the past with no problem with a slow titration. I hardly had any side effects at all. This time, I had horrible anxiety and terrible nausea (to the point where I felt like I was going to vomit all day - not fun). If it's possible for you to titrate more slowly, I think you're likely to have better success.

Good luck!
 
I think we are putting it up 50 ml a day alternating morning and night every 2 weeks, I am coming off topirimate at the same time.

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