Topamax Gave Me My Life Back

donā€™t beat yourself up im sure u did the best u could in a terrible situation :frowning:

Thanks for this, my neurologist did not tell me of any side effects of Topamax and I have just started a few days ago and was wondering what was going on, I had expected to feel better not worse. I am nowhere near as bad as you I had movement 2-3 times and day everyday for 3 mths before this was prescribed. I am on day 5 of 25mg and not feeling to bad now, my head feels heavy but no dizziness but tired. I am wondering if I should even increase my dose? Did you feel emotional? I have been very emotional not sure if it is the Topamax or just being overwhelmed. I am lucky enough to be getting the weight loss almost 2 kilos in 5 days!

Hi, I am currently on 25mg of Topamax, it has got rid of my dizziness and I feel not bad so am wondering if it is worth going up to 50mg. I have a dull headache and muscle aches but other than that not bad at all. Did you get any of these things, they are tiring more than anything not great having a permanent headache but it is mild. Would I feel better or worse if I increased my dose?

Hi all
I have never posted before but have been reading the board during my last years of terrible illness. I just havenā€™t feel able to share but you have all helped a lot, so thank you. I just wanted to chip in (at this late point!) that topamax made a big difference for me. I went from not working, using a walking stick, being hospitalised a couple times, not being able to bend over or turn my head, and being really quite unwell to being back at work and much improved. I tried sandomigran and it did nothing. It took me nearly 12 months to titrate up to 100 mg. I am not the same person that I used to be - I definitely still have balance issues, feel the waves, get pulled from side to side, sometimes use my stick, occasionally fall over etc but I am much better than I was. Recovery is painfully slow- years have passed. But if I compare myself to this point 12 months ago (when I was on topamax, but not for as long) I can now go out at night for a few hours. I could however still win an Olympic gold medal if only there were a team for sleeping :smiley: But when I started taking topamax I definitely felt a lightbulb went off - or something shifted neurologically. It was a breakthrough drug for me.

Palestrina

Hi Everyone, I am new to this site, not officially diagnosed with MAV, but it has been suggested by a VRT that this could be what I am suffering from and my GP recently started me on 25mg of the generic Topamax. What caught my eye was that Zoology is Canadian and has a Neurologist and I am just wondering where you are from. My GP does not think I need to see a Neurologist, which I will strongly push for. I am near Ottawa, Ontario, but hear that Sunbrooke in Toronto, Ontario has a very good department. I am just getting through some of the feeds, the survival guide etc. I hope there is light at the end of the tunnel and what brought me to this particular page was searching information on Topamax, as after just a few days I wondered if taking the medication is worth while. I will keep reading and learning. Thanks again everyone for your input.

Hi, one thing I have learned here is that what is good for one person is not necessarily good for another. Itā€™s all trail & error. I tried Topomax 25mg & was happy it got rid of my dizziness, the only thing was I felt terrible otherwise with flu like symptoms & terrible muscle aches and pains. Others have said stick with it as it gets better. My numerologist said if you feel like that itā€™s not for you. I was disappointed as I wanted the weight loss side effect lol all the others have the opposite effect. Anyway I am now on Inderal and doing much better. You must see a numerologist not just a GP.

Thanks Nim. I stopped taking the Topamax after 4 days. The light headedness,not the spinning dizziness but I still could not focus normally. I felt really awful on it and missed two days of work. I will look up to see if there are other formus on Zomig (Zolmitriptan) which was also prescribed. It will take up to 6 months to see a Neurologist.

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So glad to hear this success story! IĀ“m so glad you feel better! I started crying when I read this, so good to hear that itĀ“s possible to get well!!

IĀ“m wondering, were you dizzy also when lying down? And looking up/ down? Changing head positions while lying down? Or are these symptom only present in BPPV? BPPV Treatments donĀ“t work for me and the neurologist thinks I have MAV. ThatĀ“s why IĀ“m asking you these questions, I donĀ“t know who to trustā€¦

anne76, I had the dizziness when lying down thatā€™s why my GP thought I had BPV, it was worse lying on one side (in my case the left). I really suggest you get your neck checked out. There is some study done by Dean Watson that has established a link with the C2 vertabre and this sort of dizziness. I had a treatment and it really helped almost instantly. Topamax is very strong and I think it is more useful for very bad cases, it got rid of my dizziness but I did not feel well on it. The more standard medā€™s helped with lesser side effects (Inderal) Good Luck

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Thank you so much for your answer!
I have started to get physical therapy now and I really hope it will work. I will talk to my neurologist about the meds- and tell him what you wrote to me. Thank you for your advice and good luck to you too :slight_smile:

anne76 just remember the physio I received is very specific for migraine related dizziness/headache. Google Dean Watson physio and take it to your physical therapist and ask about it.

I almost started crying when I read the OPā€“I on day 4 of Topamax at 15MG and am sicker than i have been in a few months! I was on 25 mg awhile back for about a week and hated it so back I stopped after 6 daysā€“twice. Maybe third time will be a charmā€¦hope so! I was at a point where my vertigo was episodic (daily, but still had periods of freedom from it) but now back to constant and I am thinking itā€™s the Topamax. I guess it has to get worse before it gets better! Anyway, thanks for the inspiring story!

Nim, did you also have nystagmus- even more when lying down? My oto says thereĀ“s no nystagmus (using the video glasses), but my eyes are moving up and down, from side to side. I know this, because I can feel it with my fingers on my eyelids. The doctors can feel this too and they donĀ“t understand whatĀ“s going on.
I know from reading about vestibule migraine that you can have nystagmus during attacks.

IĀ“m so happy for you that you got rid of the dizziness- IĀ“m hoping the meds will work for me too. But IĀ“m afraid this is BPPV and they never seem to get rid of the crystals- I have had about 30-40 treatments (Epleys, Barbecue, turned up side down in a wheel etc). I think my oto doesnĀ“t quite believe in the MAV diagnosisā€¦ He thinks that people suffers from crystals in anterior canal and get the wrong diagnosis.

Soā€¦.I really appreciate if someone could tell me if they did have nystagmus too- but still got well using medication??

All the best to you

Zoo-

Thanks so much for posting this success story! Your symptoms are so much like mine, including the feeling of being pulled to the right.

I had a trial with Topamax. It did not go very well, as you and others can imagine. But somehow that med always made sense to me. My brains were scrambled eggs and I thought they needed some calming down, for lack of a more educated way to explain it. But I felt disoriented and all of the other symptoms were just too much for me. I ended up getting some help from Verapamil and Paxil. That combo lasted for a while, letting me get back to work but not really getting my life back, which I so miss.

I went off everything but benzoā€™s as needed several months ago. I never have felt perfect, but I was so sick of the constipation that Verapamil caused, and the anxiety SSRIā€™s and SNRIā€™s caused me. Then, here it comes again, sneaking up on me like some scary creature in a B movie. Ears start up first, light and sound sensitivity, now disequilibrium, then headaches and that neck pain again. Yuck.

So I went back to the doc, started Verapamil and about 10 days later almost fainted as (I now believe) it reduced my bp too much. So off to the neuro I go, and just started on Gabapentin. Neuro doc says itā€™s a lot milder than Topamax, I have a lot more control over titration, and it seems to be a better option at this point than trying either Depakote or reattempting Topamax.

I feel weird, symptoms ramp up a bit as usual when we try a new med or increase dosages. But other than a nasty discovery that Gaba does NOT mix with 5htp, at least in my little brain, itā€™s been easy to control anxiety etc with Xanax or Valium on an as needed basis.

If I do discover down the road that Gaba looses its efficacy, I may try a Topamax trial again. So many of us here, have had great success if they can just stick it out for a while! My only concern is this - I will not be able to work. That means disability, which is fine by me but itā€™s hard to make ends meet on it sometimes.

Anyway thanks for the inspiration. I will not be giving up on Gaba anytime soon, barring of course life threatening SEā€™s, and your story reinforces the fact that I need to give the drug a fair trial.

anne76, my nureologist said I did not have the eye movement but never and an ā€œepisodeā€ while I was there. Surely your doc would try the medication and see what happens? it cant hurt. I am on Inderal now and all good pretty much.

ā€” Begin quote from ā€œzoologyā€

Further, he said that Topamax works very slowly, and the positive benefits may not be seen for as long as three months or more.

ā€” End quote

After all these months later, Iā€™ve come back to re read your post once again, Iā€™ve found what I was searching for. Thanks so much zoology. Your post really is one of the best.

Thank you! The Iā€™ve been on Topamax 4 weeks now and my neurologist told me he thought it was ā€œhighly unlikelyā€ that it was the cause of my (co-incidentally timed) worsening disequilibrium and dizziness - I am so happy to hear your story as it gives me a glimmer of hope that maybe if I keep going itā€™ll get better. After 9 months of constant, unrelenting disequilbrium and dizziness and visual ā€œaurasā€ etc. My neuro only wants me to titrate up to 50mg, and to stay on it for another month though - Iā€™m concerned that this is maybe not enough dosage or time to see an effect?? I think I might need to get a second option as I donā€™t really feel like Iā€™m being listened to, or having my questions answered patiently etc. I think he may be angry with me as I asked what Topamax was and if it would be suitable for me as Iā€™d heard other people mention it, when he (my neurologist) wanted me on sebelium (flunarizine). I wasnā€™t keen on going straight for the sebelium as he first tlaked about it saying ā€œit makes people really REALLY fatā€¦ā€ and isnā€™t good for depression (which Iā€™ve had twice already in the past) and was worried it would push me into a relapse, and the parkinsons-like symptoms didnā€™t sound very pleasant either. he is meant to be specialised in balance disorder stuff like this, but now Iā€™m wondering if heā€™s setting me up to fail with Topamax as it wasnā€™t his first choice, as everyone elseā€™s stories all seem to be much higher dosages and for a lot longer than a couple of monthsā€¦?! Any advice?

I am new to this site and posting things in general, but I am so consumed by this illness. I have been dealing with constant MAV for about 5 months now. I cannot drive, had to take a medical leave from work, and heavily rely on my wonderful husband to take care of me and our five children. I have tried several different meds, with topamax being my current one. I have been taking varying doses of topamax for about a month and a half. My doc actually has me stepping down now. After reading Zoologyā€™s initial post, I wonder if I am going in the right direction with my meds. At the start, I was functioning at about 20%. I am now at about 50%. As frustrated as I am, that is a huge improvement. It is still not enough to get back to work and have my life back. Any suggestions are greatly appreciated.

Sorry to hear you are struggling, Amy.

Iā€™ve never used Topamax so canā€™t give you any personal advice on that. Having said that, it seems like that drug helps a lot of people, if they can tolerate it. Some go up to 100mg, so I wonder how high you have gone up. I would say, if you are tolerating it and your dose is not high, keep upping it, if your doctor doesnā€™t think otherwise.

I am struggling for about 10 months non-stop, now, myself and am trialling another drug. I know how it feels, hang in there :slight_smile:

Asli.

Iā€™ve been on Topomax for about 14 months. I initially started on a tapering dose of 25mg and worked my way up to 50 mg twice a day over 4 weeks. I just had my dosage increased to 75mg twice a day. I am not one for medications but my dr told me trust him & Iā€™m glad I did. I treat with a neuro-opthomalogist at an academic medical center. He says Iā€™m on the migraine spectrum. I find it a weird diagnosis because Iā€™ve never had a migraine. My symptoms started 3 years ago as vertigo and were misdiagnosed by an ENT. I basically have a sensitive brain - lights, crowds, noise, busy patterns, eye tracking issuesā€¦ I was so bad last year I thought I would have to stop working. The first week on Topomax was awful. I had bad headaches which is unusual for me, but that subsided and it literally gave me my life back! I have some issues with forgetfulness & some occasional neuropathy in my hands. I believe itā€™s suppose to make you tired, but I actually donā€™t sleep much since going on it. Iā€™ve seen a huge change in what I would call ā€œbrain fogā€ or inability to concentrate. Iā€™m an incredibly active professional woman in my 40ā€™s and I really donā€™t know what I would do without this drug.

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