Topamax advice and suggestions - please help

Hello, folks. First time poster here. My name is Jesse, I am a 35 year-old male and I have been suffering with chronic dizziness/imbalance which has gotten progressively worse for almost 3 years now. I have had the usual workup of doctors visits and tests including MRI, ENG/VNG, audio/hearing, caloric, ECOG, tympanic response, vestibular rehab therapy, TMJ appliance, and several others. Nothing has worked and no one has been able to diagnose me. The only thing that helps even slightly is Xanax. I recently visited a neuro and he thinks it could be migraine-related and put me on Topamax. I have been on it for a week and my big question is, is it common to feel WORSE before feeling better on this drug? 1 1/2 weeks into taking this drug, even on this low beginning dose, the dizziness, malaise, low-energy, etc. are all much worse and I am really struggling to find a reason to continue with it. If I knew there was a possibility that it could turn around and get better in a few weeks (I am on an 8-week trial), I would be more willing to endure this torture. ANY help that anyone can provide would be appreciated. After three years of this hell, I am truly suffering and am so ready to find relief from this, and am hoping the MAV diagnosis is finally “the one”. Thanks, everyone.

Hi Jesse

There are many on this board that are on or have tried Topamax so I believe you will get varied responses…and I think the big thing to stress with MAV is everybody is so individualized, you just have to find what works for you. I will give you my experience with Topamax, I started approx the 2nd wk on June and originally was ordered 25mg in the morning and 25mg at night x 3wks then to increase to 50mg in the morning and 50 mg at night (didn’t happen, was sick as a dog and thank god for the people on this board guiding me to lower the dosage and slow down the increases)…what I have learned from this experience is low and slow with this med. I finally reached 75mg about the 3rd week in July and started to see an improvement, I can actually say I had probably the best 10days I’ve had in a long while but then slowly the symptoms came back but now even with them coming back they are not near as bad as they were in June…saw the doc yesterday and he feels we are headed in the right direction and I will now slowly increase to 100mg. What has worked for me is I only increase by 12.5mg (I know cutting those tiny pills in half is rough, but I know some on the board even went a step slower and cut them in quarters and only increased by 6.25mg), and I only take it at night. Usually with each increase there is a rough few days until your body adjusts to the new dose and then it starts to even out, I also take .5 to 1mg of Ativan a day (on a good day don’t need it) to help quiet the craziness down, so if the xanax helps I would suggest use it as prescribed. Those first 4-5 wks were really rough though…so I know where your coming from. I hope this gives you some insight, and as I said, I’m sure others will drop in to give their input that will also help you out. Best of luck.

Cecilia

I am in week 5 @ 75mg a day (25 morning, 50 at night) with no change in my symptoms at all. In fact, going into stores and walking down the street (two activities that were difficult in the past), have become even more difficult since starting the Topamax. The MAV diagnosis by my neurologist is, in my opinion, an educated guess at this point since I have seen so many other doctors and no one can figure this out after 3 years. Do you know of any migraine meds that MAV patients, in general, respond to well? Is there one or two that are preferred? Maybe the next time I visit him in October I can mention trying something other than Topamax. Thanks.

Hi Jesse,

My name is Donna–I’m on the Topamax ride too. I was on 12.5mg for 7 days and upped my dose to 25mg for the past two days. I’ve been having a heck of a time too–I feel absolutely awful. My docotor wants me to go up to 50mg, but honestly I don’t know if I can do it. I’m feeling this really odd mix of jittery and exhausted, my dizziness and feelings of imbalance are worse, trouble falling asleep, awful nightmares when I do and pins and needles feelings all over my skin for a few hours right after I take the pill. It’s maddening, but like you mention in your post, I would be willing to stick it out if I knew it might get better and help stop my awful dizzy spells. I’d like to get my life back and be able to walk down the street again without feeling like I’m veering all over the place or about to fall over. But for now, Topamax is just making it worse…

Hope you start to find some relief soon! Please keep us posted on how things go for you.

Donna

Donna,

I can tell you that I had the same initial reaction for the first week or so. All of those awful sensations went away after a while. I think this drug takes some time for the body to adapt to, like many other drugs. I am into week 5 and barely have any of the intial side-effects and I am up to 75mg a day. Unfortunately, for me at least, I have yet to see any effect at all on my chronic dizziness. I am still relying on a daily dose of Xanax just to take the edge off and the Topamax hasn’t done anything. I will be going up to 100mg a day next week and from then on so we’ll see but I don’t have much hope at this point. I have been living with this for 3 years now and it keeps getting worse. I am hoping to find some help within the MAV community because I do believe I could be an MAV sufferer but have not found the correct medication that will work for me just yet. Stick with the Topamax, the side effects should go away and maybe it will work for you. Good luck.