Hi, I am new to this forum too, and it is a breath of fresh air. Reading all the posts from others that describe my daily life is encouraging. I have constant dizziness and I have not recieved an official diagnosis of MAV. I have a long history of complicated migraine, but now in the past year my symptoms have changed to the constant dizziness with the occassional migraine in between. I do have a complicated migraine diagnosis and am currently on Propranolol which provides very little relief. My question is regarding doctors- I am aware of the fact that most doctors are not too familiar with MAV, my doctor has not mentioned it, but can anyone pass on some names of doctors in the US that ARE? Also, has anyone had success with depakote?
Pam
Pam,
The doctor who diagnosed me is in Iowa City. My regular doctor has taken it up to folllow the Iowa City dr’s advice and simply treats it as a migraine problem. We tried three different meds and the first two worked for me, Topomax, and Neurontin, but their side effects were worse than my original symptoms for me.
The med that ended up working for me (so far) is Depekote and Klonopin. The biggest problem with Depekote is that it can be hard on the liver and requires regular blood tests. For me, all of the meds that I have tried have caused some nasty headaches, including the Depekote, but I have found that Konopin worked for those headaches.
Hi Pam,
I’m new to the forum too and am also interested in knowing, specifically, if there are one or two clinics / centers in the United States that are considered to be the leaders in the field or the absolute best places to go.
In in the Atlanta area. I found my current doctor (after going to a couple that weren’t helpful) through the Vestibular Disorder’s website (vestibular. org). I currently go to Dr. Steenerson at the Atlanta Ear Clinic. He did identify my symptoms as migraine-associated vertigo and has referred me to both a neurologist and a vestibular therapist. I have not gotten relief yet, but I am still hopeful. Good luck.
Allison
An expert in this area is Dr Robert Baloh at UCLA Medical Centre. He is one of the top researchers and clinicians in the field.
Thanks, Rob!
Allison,
Johns Hopkins is supposed to have one of the best oto-neurologists in the country. The book Healing your Headaches is by a former Hopkins doc so they are all very familiar with the disorder and it’s treatment.
Julie
Allison,
I’ve been to Hopkins as well, diagnosed with Vestibular Migraine and, as Julie noted, recommend the book Heal Your Headache by Dr. David Buchholz. It’s a 3 step plan to help you remove some medications that may be doing more harm than good, then go to a preventive diet that identifies known migraine triggers and then, if necessary, move on to preventive medication. I’ve been on the diet for 9 weeks now and have seen little improvement. They say it can take up to 12 weeks but that about 85% of people who follow the diet religiously will get good results. For those that don’t there is a list of medications that will help. I found the book to be an easy read because I wanted every bit of info that I could get my hands on. Johns Hopkins Hospital is the “Best of the Best” in U.S.News & World Report’s Honor Roll of “America’s Best Hospitals” for the 17th consecutive year. I had an absolutely great experience there, the entire staff couldn’t have been friendlier or more helpful. If you’re anywhere near the Baltimore area I wouldn’t hesitate to make an appointment. You may not be able to be seen for several months but that’s they way it is when they’re seeing patients and doing research. It seems quite a few in the ENT and Neurology fields are just not familiar enough with this diagnosis. I was told by both my local ENT and neurologist that I had a resolving viral neuronitis and that because I did not have headaches, but only non-specific dizziness that it wasn’t clear cut for migraine. When I went in to Hopkins, the doc was in with me for 2 minutes before telling me that I am an absolute text book case of vestibular migraine. That MOST of the patients that come in and are diagnosed with this do not have headaches at all. Hope this helps 
Lisa