The Migraine Associated Vertigo Community
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Minnesota or national referrals?

Hello all,

Here’s a bit of background in me. I’m so happy to find you!!! I have several diagnosis including MAV and binocular vision dysfunction both of which I received after suffering a “mild” concussion but believe I may have inner ear dysfunction and would like to be confident that I know what is really going on with me. Without giving you my entire saga(which I can do but am on my phone), what sort of Dr am I looking for to fully evaluate my vestibular system and/or treat my MAV??

I had bouts of unbalance/dizziness for a year or two preceding the migraine. The ent I saw couldn’t diagnose anything until two years in and after the concussion I said I had been dizzy for a month. I did have a VNG with mild abnormalities. He diagnosed me with MAV and offered Effexor which I declined. My neurologist had me try propranolol which didn’t work and recently gave me no new options and said to come back in 4 months!

My eye dr who does my vision therapy and is treating my BVD with prism lenses has referred me to a dr in Louisiana because he thinks I may have semi superior canal dishenence. I’d like to perhaps find someone local to see if they find anything with my ears.

I receive regular acupuncture and cupping which has helped my neck and shoulder tightness a lot!

I’ve also been on lexapro (an SSRI) and lamictal for over a decade. One thought is to switch my SSRI to Effexor.

Maybe I’m getting ahead of myself.

BOTTOM LINE: I’d love advice on who the great Dr are out there. I know of Dr Hain and feel conflicted that he’ll only do a consult but no testing and Dr Gianoli in Louisiana.

Amy

Dr.Hain will do both testing and consult. I am an out of state patient and i have been tested by his clinic. I also meet him yearly once for a follow-up.

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They just told me today that for out of town patients, he will do a one time consult with no testing. I was asked to sign a form that I understood this! What the heck!

Another specialist for you to try to find locally is a neurologist-otologist. That specialty should have you covered.

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Bring your local test results to Dr. Hain.

Also, read our wikis. Get super knowledgeable. If you become an expert you’ll find lots of local ENT or neurologists are trainable. MAV forces kind of a lot of patient advocating. If your brain is currently too fried, make a friend or family member come along to ask your list of questions and remember the answers for you.

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Yes they did that to me as well. You will fill out a questionnaire and then Dr.Hain will make a call whether you need VEMP, Rotary chair etc other tests and he will have you get them done before he see’s you. If you ask nicely he will permit you to see him every year.

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My local Neuro just told me the only treatment for vestibular migraine is meclazine 4x day. I’m feeling beyond stuck. Do I switch drs?

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Yes, switch doctors. I’m on #5 but so far feel like this one has a clue. It takes persistence.

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Hi Amy, not often will you hear us tell one another to jump ship on a doctor, since we would like to think they know what’s best for us.
But I second Emily… yes, switch Drs!
We can’t expect all Drs to know about this rather obscure condition, but it is not too much to ask for them to at least research before making an arbitrary statement like that. If they had done any research at all, they would have realized there are many treatment protocols.

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Thank you ladies! My psychiatrist agreed and just prescribed me a preventative himself! On another note, is it ok to post helpful things anywhere like a cool migraine safe light I just bought?

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Ask James @turnitaround or Helen @Onandon03. We have product recommendations but I’m not sure how they structure it.

Hi We do have a recommended products section where products people have found useful are recorded for the benefit of others to come. Provided you have been with us long enough to have obtained a sufficiently trust level to be allowed to post links it’s fine to attach a link to such a product. If you can link to your chosen product on Amazon so much the better because that way anybody else taking up your lead will be making a small donation to the cost of running this site. You should be able to link it to a relevant post and James will add it to the appropriate section in due course. Thx for having the courtesy to ask first. Helen

I’m a newbie. Ill try it out first.

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I disagree with this. I take Nortriptyline daily for vestibular migraines and it has completely eliminated my vestibular vertigo. I was also successful with Topomax (but didn’t like the side effects)

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Sorry. May just be me being a bit dense but I cannot see what you are disagreeing with. Can you elucidate.

Thank you!

I think they are disagreeing with my neurologist saying there’s no treatment.

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That’s how I read it, too. And they are right to disagree. We have members here from all over the world and know of many, many treatment options.

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I see. Gotcha. Thx for that.

Yes it is fine. And thank you for asking. In fact Product Recommendations are most welcome, they happen reasonably regularly. Make a new Topic about it in #non-pharmacological-treatment perhaps? Note if I find that product on Amazon (or any of the sites affiliates in general*), I will switch out the link. If not I’ll leave it be. Thanks for your understanding! (unfortunately something has to pay the bills! :smiley: ).

*there is only Amazon currently but that is subject to change.

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