After a long period of searching around for the correct diagnosis, my 18 year old daughter has been diagnosed with MAV and is being treated by an excellent headache neurologist in New York City. She seems to have responded partially to topamax (after several other drugs) but is still somewhat impaired. While we have great confidence in her current physician, we would like to take her to for an evaluation by someone else with specific expertise in vestibular conditions just to see if he or she might have other thoughts about the cause and treatment. Can anyone recommend someone in the NY area or eastern US who we might consider? Someone recommended the Michigan Head-Pain and Neurological Institute but I’m not clear how much expertise they have in this area. Thanks in advance.
Dr. Buccholz at Johns Hopkins wrote the book Healing your Headaches which is well-thought of by members of this forum. He no longer sees patients at Hopkins, but John Carey, who trained with him, and is still at Hopkins, is supposed to be the best. The Hopkins department was written up as America’s #1 otolaryngology department in US News. My otoneurologist in NJ also trained with Buccholz, alongside Carey. He has tremendous respect for Carey, as well as Dr. Timothy Hain at Northwestern in Chicago (who also trained at Hopkins, alongside Carey, and my guy, Phil Kramer at JFK in NJ)
Timothy Hain (he is known as Chicago’s dizzy doctor) told me that 80% of his practice, for MAV, is Topamax and Effexor, and 20% is calcium channel and beta blockers. John Carey, according to his patient letter, starts with the diet, then CCBs/BBs, moving to tricyclics, and then to anticonvulsants if the others don’t work.
Hope that helps. Seeing a superspecialist and getting more than one opinion has helped me through this maze.
Thanks for the suggestions. I have read Dr. Hain’s material on the web and will contact Dr. Carey at Hopkins to see if we might be able to see him for a consultation. The list and order of interventions that you noted is essentially the same that has been used in our case, with Topamax being the first medication that seems to have provided any relief. However, my daughter still is rather limited in terms of what she can do (socially, academically) and we continue to hope that she might be able to find a way to get more on top of her symptoms. At this point, her difficulties with ‘cotton-headedness’ and lack of ability to concentrate for long periods is especially problematic. Thanks again.
Carey’s scheduler is Nancy - 410-955-7381. He also has an assistant (NP?) named Nancy, who is able and willing to answers indepth questions for you before you decide to go. If you want to talk to Nancy the NP (maybe she’s a PA, not sure), you can tell Nancy, the scheduler. They may ask that you go on the diet while you wait for your appt - there is regularly a 3-4 month wait. They may also ask you to repeat some of the testing at their facility - they wouldn’t accept a local ENG done when I talked to them. They may also ask you to go off preventatives prior to testing.
Best of luck to you and your daughter. She’s got a lot of life ahead of her.
I see Dr. Timothy Hain in Chicago. He is wonderful in helping to find the right treatment for you. After trying Topomax and Betahistine (which did not work for me) I am now on Effexor which seems to be working very well! After seeing many doctors who did not acknowledge my problems or seem to care to find a treatment, I was so happy to find Dr. Hain. I finally feel as though I have a doctor who understands me and cares about me! I would highly recommend him to anyone who suffers from dizziness!
My neice also sees Dr. Hain in Chicago. When I told my doc, who trained with Hain at Hopkins, that my neice was seeing him, he said he has the highest respect for him (and this guy does not give out compliments easily, if you know what I mean) and that my family was very lucky to be seeing him.
I’m from Chicago. If I weren’t so sick, I would go there myself. He told me in an email that 80% of his practice was Topamax and Effexor.
Good luck with the Effexor!
I truly felt that I had found a wonderful doctor but it is nice to hear the positive comments!
I hope that you are able to find something to help you.
Just for the record. my daughter’s neurologist is Dr. Larry Newman at the headache center of St. Luke’s-Roosevelt Hospital in New York City. I have the highest regard for him and would recommend him without reservation for anyone with a migraine-related disorder. He is a real expert, an excellent listener and communicator, takes plenty of time, and is a warm and engaging man. He has many patients whose symptoms include or are limited to dizziness.