For people on Topamax

Can you please advise what dosage you have found is theraputic & tolerable? Would what you recommend starting on? What is the general titration?

I have read one of Julie’s post saying its a fine balance - so I want to give it my best shot.

I have been prescribed propranolol, but am keen to try Topamax instead as a potential new med in the new year if my other options fail.



Yea, tricky drug, Topamax, hey?

I started at 6.25 mg and went up to 100 mg without a problem. Hain actually wanted me to go above 100 mg just to see, but at that point i had Pristiq in me and the two of them are synergistic in causing cognitive symptoms.

I think the reason Hain has so much success with Topamax is his dosing method:

If you feel tingling - **do not ** increase your dosage until your tingling goes away.
if you feel cognitive symptoms (you’ll know what i mean :stuck_out_tongue: **decrease ** your dosage until they go away, then continue your titration.

Right Rich?

Oh, but nobody told me about the hair thinning. it started about six months down the road, my hair started looking like an old ladies, dry and scraggly. and i realized I hadn’t cut my bangs in about six months - OMG I’m losing my hair! But the PXP has brought it back and it has brought it back brown - I was white without L’oreal Golden Brown.


One more thing Luke. When I mentioned the 6.25 to the people on (take a look over there, they know a ton about Topamax - and they are the ones who claim that too little can give you as much trouble as too much) anyway, they claimed that 6.25 was micro-dosing.

i doubt they would say that that would qualify as “too little” but of course, they don’t understand the migraine brain, because they are always surprised when I present them with a situation.

Cheers Julie

I think the best approach is to start low 6.25 and see how I go with it.


Hey Luke,

So when do you think you’ll take the plunge with Topamax? Sometime in Jan? When are you due to head off on your trip?

Scott 8)

Everyone is different but I am on 52.5mg (not a typical dose) of Topamax and doing great. when I go above that, I can’t breathe lol. But at this dosage, my MAV is well at bay.

Hi Scott

How you holding up fella?

I’m going to see how I am when i get back from Brazil at the end of december.

My big trip begins Jan 19th, so if I’m feeling bad at start of jan I think I will start it then.

I really cant wait to get away & hopefully have some relief from this hellish past year. Its insane.

I do have a prescription for Propranolol, but Topa seems like the answer.



So pleased you are so much better - it seems like Topa has done for you what Pizotifen did for me back in 06. I had a MASSIVE improvement of symptoms where my MAV didnt bother me & it gradually faded away. Sure it will for you too!

Luke - did pizotifen knacker you? How did you handle that?

I’ve got some here I could probably throw back again but it used to leave me wrecked in the mornings.


Hi Scott

It made me feel dopey for a week - but after that was ok. The only side effect for me was massive weight gain. Although, I would rather be fat than dizzy.

Unfortunately mate, you have to give these meds a while to work. I know they really knock you around & make you feel pants, but I think you need to ride the storm until it settles.


— Begin quote from “dizzyrascal1983”


So pleased you are so much better - it seems like Topa has done for you what Pizotifen did for me back in 06. I had a MASSIVE improvement of symptoms where my MAV didnt bother me & it gradually faded away. Sure it will for you too!

— End quote

Thanks very much! What exactly faded away? The MAV or the results? I hope the MAV :slight_smile:


Hi Rich

The MAV faded away :slight_smile: but the bugger came back when I had been off all meds for 8 months. One day 100% - next day 15%! It was insane I was just in car & had a lightheaded spin sensation which left me feeling like I had been in an amusement park. Now I’m back in hell trying to dig myself out.

Its been 8 months since my relapse…oh bring on the years!

It feels great not being dizzy doesn’t it - soon you will take it for granted!

Hi Everyone:

I am new to this site. I have been using Topamax for four years and it works very well on my migraines at 100 mg, however, it took years to get my vertigo to diminish. I continue to get brief spins (very brief) and slight headaches, but they are nothing like they once were. Does that mean that I should be increasing my dosage? I also have ototoxicity which means I have dizziness with that also, so it has been difficult to determine what is happening to me as a result of which problem.

Anyway to answer your question, my dosage has been 100 mg per day for years now, but after reading everyone’s postings I am beginning to wonder if I should increase mine because I did not realize that Topamax could also eliminate vertigo spins completely, too. If that were true mine should have improved years ago. Any suggestions?

Thanks and good luck!


Would you mind if I mention this to Hain next time I talk to him? I find it striking that four years after starting Topamax your dizziness started to improve - have i got that right?

I don’t talk to him for a month, so I can’t get any of your questions answered right away, but that sure is interesting to me. He claims that Topamax reaches peak effectiveness at three months. and my experience was just that. I had a surge of improvement at the three month point and then held there.



Mine is a very complicated case. My migraines markedly improved three months after taking Topamax, however, my vertigo spins continued to worsen and heightened considerably two years into taking it. At that two year point I was diagnosed with ototoxicity (toxic poisoning of the ear) and lost 80% of my vestibular system. That is when severe dizziness along with vertigo spins and imbalance became an even larger part of my life. So, Topamax helped my migraines, but it has not been until recently, after two more years of physical therapy for my balance disorder to regain my balance, that I have seen a vast improvement in my dizziness and vertigo spins. I continue to get them from time to time but on a much smaller scale. The spins are brief and MUCH more tolerable. So, who is to say what the cause of my improvement is, it seems more likely that my PT rehab helped. No one knows for sure.

Until finding this site I even thought the cause of my neck and upper back pain and stiffness was due to my balance disorder and my body’s constant effort to keep me upright. I did not realize that MAV could be the cause! I hope this helps and was not too confusing.


I get it, plus there is another thread going on about ototoxicity. I’ll catch up on it over there.

Thanks Karen.

I’m sorry for all your suffering.


Karen, did you get ototoxicity from Gentamycin?



Sorry for the delay in replying to your question. Our holidays were full and so was our home. The cause that I was given for my ototoxicity by the Head of the ENT Dept at The Cleveland Clinic was Unknown. Then when I learned what it was and how people usually developed it, I visited Dr. Paige at Strong Memorial Hospital in Rochester, NY. After he looked at my history of gentamicin, tobramicin, neomicin and other aminoglycosides for frequent ear infections through the years, he did conclude that the amount of drops that had been administered to me were probably the cause of the toxic poisoning. So unofficially that is undoubtedly the cause. Everyone is worried about lawsiuts, but I don’t need the stress of going through that. I prefer to get some help, that has alwyas been more important to me. Now I try to warn people and often suggest getting the tests done if they have had gentamicin and are now experiencing vertigo.

Take care,


Hi Luke,

I’m fairly new to this forum but wanted to let you know I was on Topamax for over a year and it didn’t do anything at all to help my Vertigo or migraines.

I started out on 25mg/day taken at night, increased to 50/mg per day, and the increase actually made my vertigo worse.

I am currently off Topamax and am doing so much better! I also didn’t like the side effects of tingling, forgetting words and the depression was unbearable to me. But it sounds like it works well for others so I hope you are one of those folks.

I hope it works for you though! Good luck!

Hi Beth,

Have you tried any other meds at all? Anything in the pipeline?

I also had a bad start on Topamax last May. It gave me heavy-duty depression within 2 days and I pulled the plug immediately. I’m about to give Atenolol a shot next … will start on Tuesday.

Cheers … Scott 8)