Diagnosed by Dr. Baloh

At Adam’s recommendation, I traveled to California and saw Dr. Robert Baloh on the 13th. I was there only minutes when he looked at all my medical records and tests from 9 other doctors and said it was simple, I had migraine associate vertigo. I guess with my family history of migraines and my mom’s history of vertigo, it doesn’t seem that complicated, but all the other doctors seemed to think so! The last dr. diagnosed me with hydrops. Adam…I told Dr. Baloh I had a really smart Australian friend who led me to him. And you were right, he does want to study my family. It’s all very interesting, but still frustrating because although I do have an official diagnosis, I am still without a doctor that knows anything about my problem!

Dr. Baloh asked why I was taking the meds I was taking…I laughed and said I was my own doctor and I was doing the best I could! So, he suggested that I increase my Topamax to 300 mg, stop taking the Elavil completely (because the dosage I was taking - 12 mg wasn’t really doing anything anyway. (And I don’t know if it has anything to do with it, but since I stopped taking it, I’ve had a headache since - 4 days!!), and switch the Wellbutrin to Paxil. But because I had mentioned that the Topamax makes me “dopey”…he said maybe I didn’t want to increase it?? Now I just have to find a doctor to prescribe it. I went to a different ENT right before I left and felt like I was giving him a lesson in dizziness…then paid him $165. I’m wondering about going to a neurologist? In the town where I live, NO ONE understands migraine associated vertigo. They know migraines, but not related to anything.

So, I’m wondering…should I increase the Topamax and does anyone have experience with Paxil vs. Wellbutrin. Dr. Baloh said it is better for anxiety and migraines. Also, does anyone take Toprol for MAV? I take it to slow my heart rate, but Dr. Baloh said it is sometimes used for migraines since it’s a Beta Blocker and hinted that the combination with everything else might not be a good thing.

I’m so glad you got to see him and hope it was helpful! He’s definitely the expert on MAV and knows it inside out. What’s particularly exciting is that he is also a geneticist and is looking for the genetic cause of MAV. He’s found the genetic cause of many other conditions, so I hold out a lot of hope that he’ll find it! It bothers me that so many of the doctors you’ve seen have ignored your family history - there are no other vestibular disorders that have an inherited pattern - they are spontaneous, and MAV can be spontaneous as well (doesn’t have to be inherited).

I know what you mean re. the headaches after stopping Elavil. I’m the same way… if I stop my tiny dose of Pizotifen (which is a very similar drug), I often get one big headache that lasts as long as two weeks. But it does go away… and the headaches for me generally return to their normal level.

It sounds like a neurologist (for help with the meds) might not be a bad idea. Was he able to recommend one to you? I’m sure once you’ve played with the dosage of Topamax to your limits of what you can handle in terms of the dumbing effect, and added something else you will get there. It sounds like you respond favourably to medication so that’s a good thing. Maybe the Paxil will help (it has for others).

Hope you can take comfort in having a firm diagnosis. I’m sure if you told your local neuroto that Baloh diagnosed you in minutes, he’d say well it must be migraine then… that’s what happened to me when I saw my neuro after being diagnosed by the prominent Australian neuroto Halmagyi (who does work with Baloh)

Adam

Hi Gang,

Here’s an old post I dug up. It looks like Baloh knows about Paxil as well. That’s good to know because he’s a really hard core science geek and does a ton of research into the genetics of MAV.

Scott 8)

tgmga - I was just a bit confused - why did you say that you are “still without a doctor that knows anything about my problem.” Is that because you can’t continue to see Dr. Baloh, because from what you said he did know about your problem. what meds are his first choice for this condition? was he optimistic that it will go away with the correct treatment?

Hello,

I didn’t know about this doctor Baloh. I live 30 min away from his office. So he is in big favor of Paxil?

Emma