Different meds

[Scrunch1974]

Hi all I have just come off acetazolamide and spent six weeks going on topirimate.has anyone else been on this medication before? Not really enjoying the side effects ☹️

[ddmagee1]

My neurologist put me on topirimate over a year ago, and it has done wonders for helping me with Ataxia, headaches and a general feeling of clearing my head. Of course, I still have Ataxia symptoms, like I couldn't walk a straight line, if I had to, or I couldn't go ice skating or roller skating, or even riding a bike, because of balance problems; however, I am able to get around a bit better without falling, most of the time. I don't seem to have any side effects. Hope you can get some relief and that the medicine will help you better.

[Scrunch1974 in reply to ddmagee1]

Thanks for your reply,can I ask what dosage are you on? I was on a high dose and getting double vision ,rapid heart rate and vertigo so I'm lowering the dose and hoping it helps.since taking topirimate I haven't felt quite right and this worry me a lot! Maybe just me overthinking things lol😳

[ddmagee1 in reply to Scrunch1974]

25mg - just a small dose. Twice a day.

[majajefferies]

Hi!

My son has been on many AEDs. He didn't tolerate topiramate at all.

What was wrong with Acetazolomide?

Could I ask what type of seizure s do you get?

[Scrunch1974 in reply to majajefferies]

Hi I have ataxia brought on by life long migraine,acetazolamide didn't bring much relief so neurologist put me on topirimate and to be honest the side effects are worse than the ataxia!

[anihol in reply to Scrunch1974]

Hi I had the same issues with both those drugs. I ended up on clonazepam and amytriptiline with gabapentin for peripheral nerve pains.

[Scrunch1974 in reply to anihol]

Hi thanks for your reply anihol.what type of ataxia do you have ? I'm seeing my doctor in a couple of weeks as I'm Lowering the dosage to see if it helps with these awful side effects but I'm thinking of coming off the topirimate and asking for an alternative.i just can't stand it any more😟

[anihol in reply to Scrunch1974]

They are not sure but as well as balance , peripheral pains, speech and swallow issues, I appear to be having breathing difficulties and terrible symptoms of possible meniers disease as well

[Scrunch1974 in reply to anihol]

Oh gosh not good at all!! It's as if we ataxians live in a world that no one understands what it's like! What I would give to be back to normal again😞x