Hi - My dizziness started in Janurary and I was diagnosed with migraine associated dizziness in April by a neurotologist who doesn’t treat it, so he referred me to a neurologist. He started me on 25 mg Topamax. He said the goal was to get up to 100 mg, and I could either do it in increments of 25 mg a week, or stay 2 weeks at each dose before increasing. A friend of mine is an MD and he advised 2 weeks at each dose, having some familiarity with the drug, so that’s what I’ve done. The neurologist wanted to see me when I was “comfortable” with 75 mg - so I saw him 4 days ago.
I might mention that “comfortable” in my case meant that I got really constipated with each dose increase, and had to figure out how many prunes and how much Citrucel to take in order to keep things moving (found out the hard way that Dulcolax and Miralax were cramp-inducing overkill); plus I get occasional tingling in my fingers that I decided I can live with; and Pepsi tastes yucky (which is actually fine because I wanted to cut back or quit the stuff anyway!). I’m not sure I can attribute what feels like a slowness in the way I think to the “Dopamax,” because I feel I lost a few IQ points when the near-daily dizziness started 5 months ago.
Anyway, I haven’t had any severe dizzy spells or tunnel vision since before I started on Topamax, so I can’t really judge if it’s helped in that regard or not. (And I don’t have a long history of migraine headaches - just a few since I started perimenopause 3 years ago; I probably had some as a teenager, which I thought at the time were sinus headaches.) So now I’m on 100 mg. My near-daily mild to moderate dizziness continues, and I didn’t expect it to go away immediately. But I was wondering if anyone else who’s had success with Topamax had near-daily dizziness and if so, when did the dizziness stop being so daily?
hi, im new here, but i just started Topamax as well, my nuero prescribed it the same way…
starting at 25mg then working my way up to 100…
did he prescribe that for the dizzies??
is your a constant lightheadness/brainnfog/confusion/surreal feeling??
i too am lookin for the magic pill to take this away!!!
i myself dont get alot of headaches either!!
ive been on meclizine for two week, 75mg a day, and nothing!!!
Wouldn’t a magic pill be great? Just pop it, and be DONE with this!!
Yes, Topamax is for dizziness. A lot of us don’t have vertigo, in the spinning sense, so I like how my neurotologist called it “migraine associated dizziness” instead. As I just learned myself in the last few months, migraine manifests itself in many different ways, and headache doesn’t have to be linked very closely in time with the other manifestations, like dizziness. So a medication that prevents migraine, like topamax, will hopefully reduce frequency and intensity of all manifestations of migraine.
I might mention that “comfortable” in my case meant that I got really constipated with each dose increase, and had to figure out how many prunes and how much Citrucel to take in order to keep things moving (found out the hard way that Dulcolax and Miralax were cramp-inducing overkill);
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Might try this …I have had problems with constipation my whole life…and just started using it about two weeks ago and it has made a huge diff…only one teaspoon is all it takes.
I am curious to hear more personal stories about this. Keeping in mind of course, that ANY med can affect people differently and you do have to tirate up slowly, I would like to hear your experiences on Topamax. My doctor says it is great for headaches and the aura, with the balance issues secondary (as in you likely need a different med for that.) Thanks.
I plan to start Topamax this weekend, after a 3 month trial with Verapamil didn’t give me any releif at all and I started retaining water with my ankles becomming very swollen and sore. I know Rich has had success with Topamax for MAV type symptoms and I am very hopeful for the same!
I too may be trying Topamax very soon, so you and I may be the guiena pigs! LOL.
I do know it is important to tirate up slowly. The amount that docs use to begin and tirate varies, but 100 mg seems to be the end goal. Would like to know what mg people started off at and how they tirated up and how far they got. Doc also says you have to give it a number of months to even start feeling the results (for the lower doses aren’t likely to do much, except maybe with the visual aura.) Also, as with any med, you have to get through the intial bad feelings (which can vary) until your body adjusts. If you quit too soon, you don’t know if the med will work. (I hope I don’t have to remind myself of this when I go on it!)
bcrelief - I hope your doctor is mistaken, because headache and aura are the least of my problems! I guess the tunnel vision was aura, and that’s happened to me exactly twice (both times during severe dizzy spells) and it would be really nice not to have that ever again; and my headaches, while they can be bad, have never been horrendous (my husband has to put eyeshades on and I have to whisper when I speak to him, he’s that sensitive to light and sound during his headaches, while I just find light and sound to be painful but not excruciating).
But the dizziness affects my life more than the headaches and aura, both more in frequency and severity. When severely dizzy, I can’t walk or drive - fortunately, a dizzy spell has not yet hit me during driving. But once I was at a restaurant with my husband when I became very dizzy, and we had come in my car - he had to adjust the driver’s seat (he’s a foot taller than I) so he could drive my car home since I was disabled at that point.
And the mild “wobblines” of my daily life means I have to slow down my walking pace or I feel like I’ll lose my balance; and the “head motion intolerance” means that I can’t move my head very fast back and forth from my computer screen to the page I’m writing on, or else it will feel like my head is still moving and I’ll get dizzier than I already am. I now describe that as being like just stepping off a rollercoaster. That’s how I feel pretty much all the time. I have some parts of the day when I don’t feel it, and a rare full day when I don’t feel it, but since January, it’s been that just off the rollercoaster feeling for the majority of the time!
It’s now one month on 100 mg of Topamax. That’s only 1 month at the therapeutic dose and I know it can be up to 4 months before you see results. At least I can say I’ve had no aura and no severe dizzy spells since before I started on Topamax, but that could be coincidence since I haven’t had many auras or severe dizzy spells in my life…
Hi MaryAlice - I am not trying to scare you, so don’t fret. Keep in mind one thing here - the doc I dealt with is a neurologist who deals more with MIGRAINES. While she is aware of MAV, she is not as familiar with the balance/dizziness. I am also seeing a different neurologist (who recommended her to me for my migraine/aura issues) who deals with balance/MAV. So what I am saying is while she did specifically say that Topamax is highly recommended for headaches and auras, and not as much for balance, she didn’t say that it WOULDN’T help balance issues, which as you know are connected to migraine. Do you understand what I am saying? Of course, as always, we all just have to try a med to see if it works. That never changes, so keep going and make decisions based on your needs/experiences and consultations with your doc.
Best, Bonnie
PS. MaryALice - have you had any cognitive side effects (or other major side effects on the Topamax? If so, did they go away?)
Bonnie, I was given the 15 mg capsules and supposed to start with 15 mg per day for 1-2 weeks then progress to 90 mg by 6 weeks. I may do 1/2 of the dose to start but since they are in capsules it may be hard to figure out how 1/2 of the 15 mg capsule is…I will keep you posted. Ben
Thanks for your explanation about what your migraine doc said! I’ll stay hopeful that my wobbliness will in time respond to the Topamax.
Since January, when the this whole thing started, I began to feel that I’d lost a few IQ points, so I can’t say that adding Topamax changed much in that department, though my neurologist warned me it might. Perhaps a little word-finding at first, but again I’d say I’ve been feeling I’m “not myself” since January. My own explanation has been that when I’m walking, some of my focus is on avoiding falling, so I can’t fully focus on whatever else I’m doing - and even when I’m just sitting, if I move my head at all, I start to feel that it keeps moving even after I’ve stopped it, so I get distracted by that. So all of this is really very distracting: it’s hard to keep focused on anything unless I’m sitting very still, not moving my head! I think this may be similar to what others call “brain fog” - you’re just not “sharp” and I think it’s because being off balance demands a lot of attention.
I had horrible constipation at each dose increase, but I’ve always been prone to that anyway - this just made it worse. I have occasional tingling in my fingers; less often in my toes (mainly when I ride my bike). I get the little “visual trails” when it’s semi-dark (like in the early morning light in my bedroom before I turn on a light).
Bonnie, I was given the 15 mg capsules and supposed to start with 15 mg per day for 1-2 weeks then progress to 90 mg by 6 weeks. I may do 1/2 of the dose to start but since they are in capsules it may be hard to figure out how 1/2 of the 15 mg capsule is…I will keep you posted. Ben
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Hi Ben,
Well I too will be starting this weekend, at 15mg a week, tirating up each week by 15 mg until I get to 100 mg by week 7. Am going to make a separate post regarding Topamax on the forum, so please post there (or feel free to PM me) about your experiences. I wouldn’t break open the capsule and try to take less unless the doc specifically said to do so, btw. Maybe we can both tough it out at 15 mg and go up. They say the first weeks are the worst as your body adjusts.
Thanks, Bonnie. Good luck to you also! I am having a very bad day today for whatever reason…maybe stress related to knowing I am about to start Topamax or the result of a tough work week. I plan to pop the first 15 mg capsule tomorrow night…
Right back at ya, Ben! Funny you mention feeling a little worse today - me too! I do think it is mental though due to the concern. I did start a steroid today that I take for 3 days to try to break the cycle. It has me really wired/hyper, but it’s kind of nice to have that energy! The crash will happen this weekend. BTW, my doc said take the med at night as to sleep through some of the side effects.
Best to you and keep in touch, Bonnie
PS> What part of PA do you live in (if you don’t mind me asking)?