don’t beat yourself up im sure u did the best u could in a terrible situation
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?
I have never posted before but have been reading the board during my last years of terrible illness. I just haven’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 But when I started taking topamax I definitely felt a lightbulb went off - or something shifted neurologically. It was a breakthrough drug for me.
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. It’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 it’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.
So glad to hear this success story! I´m so glad you feel better! I started crying when I read this, so good to hear that it´s possible to get well!!
I´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 don´t work for me and the neurologist thinks I have MAV. That´s why I´m asking you these questions, I don´t know who to trust…
anne76, I had the dizziness when lying down that’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 med’s helped with lesser side effects (Inderal) Good Luck
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
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 OP–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 days–twice. Maybe third time will be a charm…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 it’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 there´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 don´t understand what´s going on.
I know from reading about vestibule migraine that you can have nystagmus during attacks.
I´m so happy for you that you got rid of the dizziness- I´m hoping the meds will work for me too. But I´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 doesn´t quite believe in the MAV diagnosis… He thinks that people suffers from crystals in anterior canal and get the wrong diagnosis.
So….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
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 benzo’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 SSRI’s and SNRI’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 it’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, it’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 it’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 SE’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 “episode” 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.
— Begin quote from “zoology”
Further, he said that Topamax works very slowly, and the positive benefits may not be seen for as long as three months or more.
— End quote
After all these months later, I’ve come back to re read your post once again, I’ve found what I was searching for. Thanks so much zoology. Your post really is one of the best.
Thank you! The I’ve been on Topamax 4 weeks now and my neurologist told me he thought it was “highly unlikely” 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 it’ll get better. After 9 months of constant, unrelenting disequilbrium and dizziness and visual “auras” etc. My neuro only wants me to titrate up to 50mg, and to stay on it for another month though - I’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 don’t really feel like I’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 I’d heard other people mention it, when he (my neurologist) wanted me on sebelium (flunarizine). I wasn’t keen on going straight for the sebelium as he first tlaked about it saying “it makes people really REALLY fat…” and isn’t good for depression (which I’ve had twice already in the past) and was worried it would push me into a relapse, and the parkinsons-like symptoms didn’t sound very pleasant either. he is meant to be specialised in balance disorder stuff like this, but now I’m wondering if he’s setting me up to fail with Topamax as it wasn’t his first choice, as everyone else’s stories all seem to be much higher dosages and for a lot longer than a couple of months…?! 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 Zoology’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.
I’ve never used Topamax so can’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 doesn’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
I’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 & I’m glad I did. I treat with a neuro-opthomalogist at an academic medical center. He says I’m on the migraine spectrum. I find it a weird diagnosis because I’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 issues… 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 it’s suppose to make you tired, but I actually don’t sleep much since going on it. I’ve seen a huge change in what I would call “brain fog” or inability to concentrate. I’m an incredibly active professional woman in my 40’s and I really don’t know what I would do without this drug.