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Zonegran/zonisamide for MAV?

I tried searching but only saw old posts and wondered if any of the newer members have any experience with zonegran?

I gave a second try to nortriptyline and again on day 3 headache came back and it’s very strong, yesterday I saw neuro-otologist and he said he think I’m part of that small percent of patients that react the other way to this med and told me to not take it anymore, at least not until headaches are back under control and we can maybe try again (lately headaches are worse than ever so he said maybe this contributing to the med giving me this side effect and maybe it won’t be like that when the headaches are back to their usual sporadic self).

We went over what I’ve tried so far in the past for my bad migraine pain flare ups and I told him the only thing that’s worked great was topamax but stopped it because lost too much weight (wouldn’t mind that now since I’m not the skinny minny I once was) and lost half of my beautiful hair on top of the sporadic topamax brain moment and tingling on hands and fees so he said we should try zonegran then since it’s very similar to topamax but the side effects tent to be less, I’ll see him in 3 weeks again and if I don’t see any improvement my next step will be Effexor.
He doesn’t seem to think that I need to be on a medication for the 6 week or more to know if it’s going to work which seems so against popular opinion.

Any word on this medication? Since the MAV started I’ve become overly scared of side effects and overthink it.

It is topomax lite with lesser side effects. My neuro recommends it for weight loss as i have gained a lot. I am still faithful to effexor.

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I wanted to jump right onto the Effexor wagon since ive been very anxious/panicky since starting suffering with MAV but what he said made sense about trying something similar to what once worked for me for the migraine pain

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I’ve looked at this one too. Just in case. It doesn’t seem to be commonly used for prevention. Anticonvulsants are popular for MAV in UK. First choice of some migraine specialist neuros, Guess you need to go with it if that’s the recommendation. It’s an option. Dr Hain only makes one mention of it.

Interesting. I am very glad I didn’t quit Propranolol after six weeks that’s for sure. It took alot longer to control my constant dizziness (eight months in fact). I think beta-blockers are notoriously slow to work but it was easy to stick with because it did me no harm until It did me some good. It may well have stopped my acute attacks almost instantly unless none were due in which case it was pure coincidence I didn’t have another for over three years (unlikely). I imagine your neuro sees sticking with drugs that produce side effects at such low dose as a hiding to nothing. Helen

Here we go again, day 6 of new med/zonegran and feeling like a zombie …a different type of dizziness, feeling like I had too many shots of tequila (not my normal swaying) and just so out of it & again but the head fullness that I’m familiar with is all the way up today …wondering if it’s the so mentioned “getting worse before it gets better” or if it’s the “zonegran made me feel so bad I had to stop it” kind of thing.

This is physically and emotionally exhausting, it’s days like today that make me so afraid of this illness, I don’t want to live like this

I feel for you i really do…its a long hard struggle and trial and error. Hope you can push past it and feel better soon