I started and stopped Topamax. It's an anti-seizure medication that's used for migraines. Here's my commentary.

This drug has annoying side effects. My taste changed, I felt chilled, my mouth was very dry (which passed after about a week, but the taste issue remained), and I think it caused loose bowels (sorry, gross). It didn't help me at all, so after three weeks I decided it was time to taste my food again and stop the unpleasant side effects that only make my life more uncomfortable.

The other drug I started using is Frova which is for Migraines and used at the onset of strong symptoms. It has to be used conservatively as overuse can increase problems apparently. So we are rationed 9 pills per refill. Anyway, I have used this drug on two occasions. The first time I was having extremely bad symptoms including headache and major dizziness. I found the drug eliminated the headache but also stimulated some serious dizziness when I attempted to run (probably not a good idea when experimenting with new medications like this). I was almost unable to stand up straight. However, on my second attempt with this drug I had no problems when running.

The second time I took Frova I had better results. That was today. It took about an hour and the headache was gone. The buzzy head didn't go away, but did lessen quite a bit. I was also having major balance issues when I woke up. I was having to hold on to things in order not to tip. The drug seemed to eliminate that feeling. So all in all, I would say there's hope for the Frova. It's not perfect, but there was improvement.

I am starting to think of giving up on the idea of something that will remove my day to day buzzy head and so on. I am coping and the idea of having a drug I only take a few times a month when I am really bad is more appealing. The other drugs have such annoying side effects for a runner in particular.

That's it for now. Just keeping those of you with MAV up to date on the drug experiments.
Julianne

Hi, Julianne. I am going through about the same thing with trialing various drugs. So far, nothing is helping. I have episodic vertigo and double vision that typically only lasts 5 to 10 minutes so really only a prophylactic drug does any good for me unless I'm having a really bad day. It's funny what you said about coping. I just hit the 3 year mark, and the longer I have this, the better I cope. I guess while it's a major pain you just learn not to freak out and go with the flow (it helps in some ways when this has happened over a 100 times before). I've tried verapamil (a calcium channel blocker), trileptal (an anti-seizure med), diamox (a diuretic/high altitude med), and am now on toprol (a beta blocker) -- just started that today. So, I'm willing to keep playing the game in hopes of finding a "cure", but really don't think nearly as much about it anymore as I used to. That's great that you've continued running. Exercise is one thing I have not done well with since I got this. Take care, Penny

Hi, Julianne. I am going through about the same thing with trialing various drugs. So far, nothing is helping. I have episodic vertigo and double vision that typically only lasts 5 to 10 minutes so really only a prophylactic drug does any good for me unless I'm having a really bad day. It's funny what you said about coping. I just hit the 3 year mark, and the longer I have this, the better I cope. I guess while it's a major pain you just learn not to freak out and go with the flow (it helps in some ways when this has happened over a 100 times before). I've tried verapamil (a calcium channel blocker), trileptal (an anti-seizure med), diamox (a diuretic/high altitude med), and am now on toprol (a beta blocker) -- just started that today. So, I'm willing to keep playing the game in hopes of finding a "cure", but really don't think nearly as much about it anymore as I used to. That's great that you've continued running. Exercise is one thing I have not done well with since I got this. Take care, Penny

Hi Penny,
Do you have any symptoms other than the short episodes? According to my doc I am a good candidate for the daily meds (but which one, tried Verapamil, Atacand and Topamax already, some success with Atacand but it was fleeting) because I have a stuff going on at some level on many days. I can't possibly take a Frova on every day I have the symptoms because I have them a lot. So I have to be selective about when I break down and take one. But when I have a bad day, (dizzy, off balance, headache, heavy tinnitus) it's pretty obvious that I need to pop a pill and give it a try. So far I've been somewhat pleased with the Frova. It's only been two times, so I am not going to start cheering yet. The annoying thing is the other days of the month when I have less symptoms but no relief in sight other than my own coping skills (which translate to ignore and drive on I guess).

Exercise has been essential for me. I stopped doing it when this whole thing kicked in almost two years ago, but I finally got tired of waiting for it to pass and tried to run through it. And I am now training for another marathon (I did my last about a month before I started having chronic dizziness). I find it actually helps me feel better when I am running. It seems to clear my head.

Have you tried any of this elimination diet stuff? I dread the idea of dropping chocolate. That's just not an option for me! I don't think it would matter anyway, I have been eating it daily for my whole life! It can't possibly be the culprit.

Take care,
Julianne

Julianne, In the beginning, I noticed that I felt bad (off, slightly dizzy, etc) about half the time between episodes. My episodes have become more frequent over the past 3 years, moving from about 2x/month to about 2x/week on average. However, it does seem that my time between episodes has become much more "normal". I don't know if that's truly it or if I've just learned to live in this state.

I really should try to get on an exercise program again. While I've never been a big lover of exercise, I was rather habitual about it before all of this started and I know it made me feel better overall. I've not let this thing stop me from doing most other things.

I have tried the elimination diet to some degree -- just the major culprits and it has not helped. I still don't do caffeine simply because I got so used to living without it that I figured there was no good reason to go back to it (except for an occasional piece of chocolate, which I avoided completely for about 10 months -- that was hard). The other hard part was avoiding MSG simply because I know it's lurking in places that I don't even realize. Will see if the Toprol does the trick (I don't have high expectations at this point but figure it doesn't hurt to try). I remain very impressed with your ability to run a marathon through this stuff. Penny

Hi Penny,
Interesting about your case, sounds a bit like mine. My episodes are directly related to hormone fluctuations. I glide by the month with a lighter load of symptoms but about a week before my period everything magnifies significantly. That goes on for two weeks or so, then back to two weeks of lesser symptoms. Frustrating. Thanks for the nice thoughts about the marathon. It's sort of a pain exchange I guess. I'd rather feel like I am running and exhausted than dizzy, and running does seem to distract me from the other stuff in my head. I love it. I find the hardest thing is getting out there in the first place, but once you do, and you get into a routine, it's worse not to do it. I think I miss the endorphine rush or something. I have also found that I get sick a lot less often when I am exercising a lot. It seems to boost the immune system which is huge for us inner ear folks. A cold can knock us down for weeks, that's my experience anyway.

Good luck to you and please let us know what happens with your meds.
Julianne