Best Way To Find MAV Specialist

Physicians, Specialists, Clinics & Visits 👨‍⚕️👩‍⚕️
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Good morning, guys! Hope you are doing well! :grinning::grinning::grinning:

I would like to start a topic with the info about The Best MAV Specialist out there. In case someone needs to change doctors. Your input is much appreciated.

I’m currently with Dr. Robb MD - Arizona. Here is the link - http://www.robbmd.com/
A great knowledgeable doctor who likes to try a natural approach first.

Downside: $720/visit - no insurance. So, I went only once. And now, can’t really afford to go again.

Looking for someone to assist me with the preventative meds.

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:open_mouth:

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Sounds like Dr Robb was robbing you :frowning: is there any state assistance for having no insurance??

As a side note, each doctor has a different favorite cocktail of meds they like.

Check out the polls of favorite med choice on this forum.
In one of my posts from my diary I mentioned my neurologist saying if dizziness he liked proponolol, and if headaches then Effexor-- or it may be the other way around (didn’t recheck my post I made).

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Dr. Robb happens to have a list of neuro-otologists in the US on his website:

Because websites sometimes come and go, I’m going to print the list of names here in case the above link ever stops working. (EDIT: The categories aren’t entirely correct; he has a NYC doctor listed as west of the Mississippi, and a few others that are also geographically incorrect.)

West of the Mississippi
Robert W. Baloh, M.D. (Los Angeles, CA)
Bernard Cohen, M.D. (New York City)
James R. Nelson, M.D. (La Jolla, CA)
Joseph M. P. Furman, M.D., Ph.D. (Pittsburgh, PA)
John G. Oas, M.D. (Solon, OH)
Terry D. Fife, M.D. (Phoenix, AZ)
Jeffrey J. Brown, M.D., Ph.D. (Portland, OR)
Joseph L. Demer, M.D., Ph.D. (Los Angeles, CA)
Erik Viirre, M.D., Ph.D. (San Diego, CA)
Joanna C. Jen, M.D., Ph.D. (Los Angeles, CA)
Greg T. Whitman, M.D. (Braintree, MA)
Andrew K. Oh, M.D. (San Jose, CA)
Gail P. Ishiyama, M.D. (Los Angeles, CA)
Robert W. Jensen, M.D., J.D. (Columbus, OH)
Sarah H. Ying, M.D. (Baltimore, MD)
Neil Cherian, M.D. (Cleveland, OH)
Michael J. A. Robb, M.D. (Phoenix, AZ)
Kevin A. Kerber, M.D. (Ann Arbor, MI)
Ian M. Purcell, M.D., Ph.D. (La Jolla, CA)
Yoon-Hee K. Cha, M.D. (Los Angeles, CA)

East of the Mississippi
David S. Zee, M.D. (Baltimore, MD)
R. John Leigh, M.D. (Cleveland, OH)
Robert B. Daroff, M.D. (Cleveland, OH)
Timothy C. Hain, M.D., Ph.D. (Chicago, IL)
Ronald J. Tusa, M.D., Ph.D. (Atlanta, GA)
Jules M. Friedman, M.D. (Providence, RI)
Mohamed A. Hamid, M.D., Ph.D., IEEE (Chagrin Falls, OH)
Robert A. Levine, M.D. (Boston, MA)
Stephen W. Parker, M.D. (Boston, MA)
Richard F. Lewis, M.D. (Boston, MA)
Phillip D. Kramer, M.D. (Edison, NJ)
Martin S. Gizzi, M.D. (Edison, NJ)
Michael L. Rosenberg, M.D., Ph.D. (Edison, NJ)
David Solomon, M.D., Ph.D. (Baltimore, MD)
Mark F. Walker, M.D. (Cleveland, OH)
David Newman-Toker (Baltimore, MD)
Scott D. Eggers, M.D. (Minneapolis, MN)
Sharon S. Hartman, M.D., Ph.D. (Atlanta, GA)
Adrian J. Priesol, M.D. (Boston, MA)
Marcello Cherchi, M.D., Ph.D. (Chicago, IL)
Douglas J. Lanska, M.D. (Tomah, WI)
Pamela Y. Blake, M.D. (Houston, TX)

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I’m in the Seattle area. The Headache Clinic at UW Valley Medical Center hospital in Renton is pretty good. I’ve been satisfied with the standard of care and knowledge. MAV is it’s own beast, but they seem to be on top of it as well as any.

I haven’t met them, but my VRT person likes a neurotologist at Swedish in Seattle.

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Anyone of the guys in Baltimore are at Johns Hopkins.

Dr. David Zee was world renown for dizziness, but has stopped seeing patients. I went to him almost 9 years ago and waited 6 months to see him.

Put me on Klonopin for dizziness.

There are other neuro guys out there.

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This is the same list that I copied and pasted above, but I grouped them by state. I don’t know how old this list is, and of course some of them may no longer be practicing or may have moved to different states, but they’re probably easily found using a search engine.

Terry D. Fife, M.D. (Phoenix, AZ)
Michael J. A. Robb, M.D. (Phoenix, AZ)
Robert W. Baloh, M.D. (Los Angeles, CA)
Yoon-Hee K. Cha, M.D. (Los Angeles, CA)
Joseph L. Demer, M.D., Ph.D. (Los Angeles, CA)
Gail P. Ishiyama, M.D. (Los Angeles, CA)
Joanna C. Jen, M.D., Ph.D. (Los Angeles, CA)
James R. Nelson, M.D. (La Jolla, CA)
Erik Viirre, M.D., Ph.D. (San Diego, CA)
Ian M. Purcell, M.D., Ph.D. (La Jolla, CA)
Andrew K. Oh, M.D. (San Jose, CA)
Sharon S. Hartman, M.D., Ph.D. (Atlanta, GA)
Ronald J. Tusa, M.D., Ph.D. (Atlanta, GA)
Timothy C. Hain, M.D., Ph.D. (Chicago, IL)
Marcello Cherchi, M.D., Ph.D. (Chicago, IL)
David Newman-Toker (Baltimore, MD)
Sarah H. Ying, M.D. (Baltimore, MD)
David Solomon, M.D., Ph.D. (Baltimore, MD)
David S. Zee, M.D. (Baltimore, MD)
Greg T. Whitman, M.D. (Braintree, MA)
Robert A. Levine, M.D. (Boston, MA)
Stephen W. Parker, M.D. (Boston, MA)
Richard F. Lewis, M.D. (Boston, MA)
Adrian J. Priesol, M.D. (Boston, MA)
Kevin A. Kerber, M.D. (Ann Arbor, MI)
Scott D. Eggers, M.D. (Minneapolis, MN)
Bernard Cohen, M.D. (New York City)
Phillip D. Kramer, M.D. (Edison, NJ)
Martin S. Gizzi, M.D. (Edison, NJ)
Michael L. Rosenberg, M.D., Ph.D. (Edison, NJ)
Robert W. Jensen, M.D., J.D. (Columbus, OH)
Mohamed A. Hamid, M.D., Ph.D., IEEE (Chagrin Falls, OH)
Neil Cherian, M.D. (Cleveland, OH)
John G. Oas, M.D. (Solon, OH)
R. John Leigh, M.D. (Cleveland, OH)
Robert B. Daroff, M.D. (Cleveland, OH)
Mark F. Walker, M.D. (Cleveland, OH)
Jeffrey J. Brown, M.D., Ph.D. (Portland, OR)
Joseph M. P. Furman, M.D., Ph.D. (Pittsburgh, PA)
Jules M. Friedman, M.D. (Providence, RI)
Pamela Y. Blake, M.D. (Houston, TX)
Douglas J. Lanska, M.D. (Tomah, WI)

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I have insuarance, apparently hes really good. So, i decided to see the best specialist out there. Now, hes telling my preventative drugs cause side effects.

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All the preventative drugs cause side effects. You have to decide which better, un-medicated MAV or medicated MAV with side effects. It’s different for all of us.

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Great work!!! What do you think guys, can a patient with MAV go to a regular neurologist? Or do i have to go to an oto-neurologist?? Its freaking expensive. How do u solve the problem??

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I see a regular neurologist, but I have to walk in armed with information.

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Is it helful?? Are you currently on meds? If yes, did a regular doctor put you on that? And is it working out well?

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I’m not currently on any MAV meds. I was on topomax which I hated. If I stay keto and am careful with electrolytes, I’m maybe at 80% and improving. That’s huge given I was pretty much totally disabled in January (by MAV) and February (by topomax).

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Yeah. This is interesting. I’ve had some of my prescriptions fulfilled by my local doctor. A lot of the drug options are common and generic. I wonder how far you’d get with Hain’s flowchart and your local doctor?

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8 posts were split to a new topic: Drugs and side effects

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:open_mouth:

btw, just wanted to say that I think this seems outrageous. Did this include a lot of testing? Is it $720 for a second consultation-only visit?

There are no individual neurologists with magic silver bullets and the protocols are available publicly. You might even work on such protocol with your local GP/local family doctor, theoretically? (though perhaps someone could chime in and confirm the extent to which they are licenced to prescribe such medication - perhaps the SSRI’s are off limits to your local doctor unless its a repeat prescription from a referral?)

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In the US, a GP (here they’re usually called a family practice doc or an internist) can prescribe SSRIs.

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I agree with Flutters - they all have side effects, but most side effects for most people are minimal compared with the condition they are treating. that said, individuals have individual responses. i couldn’t take Amitriptiline for example, and Pizotifen has serious tiredness/wooziness as a side effect (that wears off over time) but Pizotifen gave me back my life after i was in a deep hole, so tiredness is OK for me for the time being.