Topamax for vestibular migraine

Hello, I have just been diagnosed with vestibular migraine. I have regular episodes which last non-stop for 5-7 days. My neurologist has prescribed topamax & I have just read all the side-effects, some such as fatigue & brain-fog which I already get & others which sound terrifying. I am feeling extremely anxious about taking this drug, yet am desperate for some relief from these debilitating episodes which are having a huge impact on my quality of life.
Is there anyone else out there who has taken topamax for vestibular migraine?
I’d be so grateful for people’s comments. Thanks! xx Amanda

Hi Amanda,

All of these migraine meds are hit and miss I’m afraid. One person’s silver bullet can be another’s poison. Topamax works very well for some, has no effect for others, and can produce some uncomfortable side effects. The good news is that you can just come off the med if it doesn’t work and move on. There are many here who have a lot of experience with this med. Have a look at these past threads here on the forum:

Good luck and let us know how you go.

Best … Scott 8)

Oh thanks so much Scott! It’s sooo good to have found you guys & not feel alone in the universe dealing with this anymore! xx :smiley:

I’m on it! It works for me.

I’m a success story. Only my neurotologist calls it migraine associated dizziness, and I like that name very much because the abbrevation is MAD.


I really LIKE the side effect of appetite loss because I needed to lose weight, and I LIKE the fact that carbonated drinks taste icky to me now because I was a Pepsi-holic (a big part of my weight problem). So the term “side effect” is not necessarily bad.

The tingly deal - which for me was mainly fingers and even occasionally lips - is mostly a thing of the past now, but I do still have it from time to time.

I used to see ghostly visual trails when I first woke up in the morning, but not so much now.

I had a lot of constipation, so I ate a lot of prunes - but I always tended to be that way - this is less of an issue now.

I do continue to have some word-finding trouble (that’s why we call it “dopamax”) but usually for words I don’t use often - big words that I’d only be using to impress someone anyway, so it’s good for the humility. I’m not doing much public speaking so it doesn’t really affect my life.

The neurotologist I saw diagnoses MAD but doesn’t treat it, so he sent me to a neurologist, who said I could start at 25 mg and go up 25 mg a week. A friend of mine who is a psychiatrist recommended I go up more slowly, like every 2 weeks, and I followed his advice. Other people who post here have gone up in even lower increments than 25 mg. The bottom line: go slow and make sure you’re fine at one dose before going up any more. Good luck, and I hope it takes care of your dizzy spells, like it did mine!

Hi Amanda,

it’s showing signs of working for me. I was perhaps 70% better at 60mg (I’ve been building up really, really slowly: 25 > 30 > 40 > 45 > 50 > 60!). And then a holiday with the family and kids to EuroDisney in Paris recently put me back a bit, progress-wise, so I’ve upped to 70mg now. Fingers crossed…!

Best wishes to you - just take it slowly, and stay positive! :slight_smile:

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Topamax is working for me too!! I take 50 mg in the morning and 50 mg at night and I’m pretty darn close to feeling like my old self again most days. The only exception is when I’m not getting good sleep, overly stressed, or around my menstrual cycle. All of those are the case for me right now, I’m afraid so this week I’ve been feeling rather crappy, but I know the reasons.

Give it a try, and give it time. You have to give it several weeks to know if it’s going to work for you. I didn’t feel improvement until about 7-8 weeks in I’d say, and it wasn’t until about week 10 that I really noticed “hey, I’m not dizzy”!!!

My initial side effects–increased dizziness, fatigue, tingling feet, carbonated beverages taste awful, decrease in appetite. All have gone away except the carbonated beverages still taste horrible and sometimes I get the tingles, but it’s not bothersome at all. And sometimes I do have trouble finding a word, but it doesn’t impact my job.

My newest issues is I am having some heartburn, that is newly developed after starting topamax so I do think it’s related, but not positive? It’s not horrible however.

The positives FAR outweigh any negatives at this point.

Go for it and good luck! And remember, if it doesn’t work, there are other classes of drugs you can try.

Thank you so much for your replies Maryalice :smiley: , I really appreciate knowing that topamax is working for all of you!! So encouraging when I’m on Day 4 & feeling very dizzy & like a zombie & my tinnitus is worse & my mouth is tingling & I’m very very tired. Thanks for your words of encouragement - I’m going to keep them in mind as I persevere through this initial period & hopefully it might help me as much as it’s helped all of you! Thanks a million! xxx Amanda

Hi dizzmanda,

Just been reading through your posts as well as dizzyizzys… I’m sorry that we have to go through this crap. Xxx

I’m on day 2 of Topirimate at 25mg… Feeling on another planet. Fun never stops with this does it?! I can’t even drive :frowning:

Just wondered if you just used a pill cutter to halve your pill from 25mg? Also how long was it til you noticed a difference in how comfortable you felt when you reduced the dose?

Hello missmoss83! How are you going on the Topamax?? I had to come off it as I felt so depressed, dizzy, nauseous, was so forgetful, anxious, spaced out & generally not myself. It culminated in me forgetting to go to an MRI that I had waited 2 months to have & then the final straw was having a car accident where I crashed into someone. I feel soooooo much better off it!
However if you can persevere with it (I was on 25mgs for 1 week but couldn’t cope on that dosage so went down to 12mgs for the next 3 weeks, so a total of 4 weeks) it does have great results for some people. Just not me!!!
I had to buy a pill cutter from the chemist as it was impossible to chop the tiny tablets in 2 with anything else!!
Went to the neurologist today & am going to try vitamin B2 for a while. Wish there was a way of managing this without horrible drugs!!
Let me know how you go! Good luck! xx :smiley:

A lot of people in this forum have said that Topamax has worked for them - this was in 2011 or 2012, for the most part. Yet, when I click on these peoples’ usernames, it seems they’re still visiting the site as recently as two days ago, and it’s April 2014 now! So I’m guessing these success stories were flukes? So disheartening. I hate this site.

topamax made my balance permanently worse and gave me all new dizzy symptoms. the 2 meds i tried after it each progressively took more of my balance and now i am almost immobile- topamax created this new pattern for me i never had problems going back to my baseline before topamax. wtf i wish i never took topamax oh also i think it permanently messed with my memory it has never been the same since.

This an older thread but thought I’d try…MaryAlice (or anyone) you said to make sure you are fine before going up a dose with Topamax…what do you mean by fine? I don’t expect that it will resolve the vertigo yet (I am only at 15mg) but I am hopeful that the symptoms decrease a bit…how did you all know when to go up? I have been told to take my time and do it my own pace. Wait until I am at my pre-15mg baseline (which is still pretty sick, but a bit better than now)?

I am really hopeful that this will work for me, that I will have days in 3-4 months that are dizzy-free! Gotta keep hopeful!

Hi, I have been on topamax for osti artritis for 7 yrs 100mg , with no problems , then 4 months ago I started have joint pain and doc said I had fibo. and raised topamax to 200mg , now I have been having bouts of diarrhea and bad stomach pain went to er one night it was so bad ,so was just wondering if anyone else has had this problem it’s really bad
Thanks aunt d 84

Are you allowed alcohol with Topamax? I have just started it and wondering whether or not you can…it says it may increase the affects of alcohol.
Has anyone had any problems?
Fingers crossed it helps me, constantly getting dizziness and panic attacks/anxiety. Diagnosed with vestibular migraines 4 years ago and was on topamax for a while and it seemed to go away after i stopped taking the stronger doses of medication.