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New, caught the summit topic on vestibular migraine question

#1

I watched Dr. Teixido at the Migraine World Summit today and he talked about me, my situation. I started with a few migraines off and on as a child, they became worse in adulthood. I am 55 now and for the last 4-5 years I have developed bad vertigo. My problem is I moved 2 years ago and can not find a neurologist near me that can help me. I went to an ENT, he sent me to a hearing specialist ( I failed to mention I have Tinnitus too). The hearing specialist said I have Vestibular Migraine. I have been to 4 different neurologists in my area and NONE of them can help me. I am running out of options. Any advice? I can’t take this much longer. My quality of life stinks. Thank you in advance.

#2

If you live in the US and can afford it, you could fly out to see Dr. Hain. I ended up printing out a bunch of information and shopping neurologists until I found one who’d work with me.

Welcome!

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#3

Hi and welcome.

Snap! Here. I’d say we are twins but I’m the Older Twin! It’s a common pattern this one.

More detail please if we on here are going to be able to help you. In what way cannot they help you? I understand you’ve had a diagnosis which is something. What treatments/preventatives did they suggest, what have you trialled and failed, what diet/lifestyle changes etc have you implemented. MAV’s little understood and each MAVer needs to be their own advocate and actively pursue their own way forwards. There’s no other way, There’s loads of info on this forum under Wiki section and you can search info on almost any relevant topic using a good Search facility on here. Dr Hain’s (Chicago) dizziness-and-balance.com is more or less the World’s Bible on the subject, well wirth getting familiar with that and as @flutters says she educated her consultant with printouts from the internet. Depends where you are in the World there are a few specialists out there but many people manage to get MAV under control with info from the internet if they have a sympathetic doctor who is open to suggestion. Once you have a diagnosis that is meaningful to you - yours is meaningful to me because Historically we seem to be ‘twins’ - you don’t really need another consultant. Not initially at least. Drugs are taken trial and error, it’s the only way and a doctor and MAVer should be able to wirk through it together in alot of cases. Good Luck. Btw tinnitus goes with MAV much like eggs go with bacon! Common symptom. Helen

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#4

Yes, before I moved I was receiving BOTOX shots from my neurologist which seemed to help more than anything. They tried me on all kinds of medications, Pamelor, Maxalt, kepra, imitrex Aimovig and the list goes on. I do take topamax for my preventive, however not sure if that really helps. All The neurologists I have seen here in Ormond Beach Florida seem to shy away from BOTOX. I’ve been to several different ones and to no avail none of them have been able to at least give me any relief. One sent me to physical therapy which helped a little. I was mainly hoping if someone lived in central Florida if they knew of a GOOD specialist that worked with migraine/vertigo. Thank you for your help!

#5

Thank you, I will look into that!

#6

Anna @Manatee - who do you see? Anna lives is Sarasota.

#7

Hello, @Chanel, and welcome! I actually traveled across the state to Jupiter, Florida, about a year ago to see a specialist who was recommended by Dr. Hain. He was very good. His name is Dr. John Li.

Here’s his bio on his current practice’s website:
http://entsf.com/our-physicians/john-li-md

I think I had to wait about two months to see him, so don’t be surprised if you have to wait a while. While you’re waiting, I suggest you do a couple of things:

First, if you’ve gone through any of the vestibular testing (VNG, hearing, VEMP, ECOG, etc.), get copies of all of those tests and make a packet that you can take with you to the appointment. I had about 50 pages of test results and when I saw him, while he talked to me he had an assistant who was going through the packet and reading various results to him. In that packet, include a list of all of the medications you’ve taken, when you took them, and what your results were. The more information you can supply in a logical format, the better he’ll be able to evaluate what you’ve already tried and what worked or didn’t work.

Second, go to Dr. Hain’s website (www.dizziness-and-balance.com) and educate yourself as much as you can. His website is huge once you really start exploring - one link will take you to another page, and so on. The more knowledge you have, the better.

When I saw Dr. Li, I mentioned that I was a member of this forum and that some of the forum members here were skeptical that “vestibular migraine” was even a real condition. He nodded and said, “up until about five years ago, I was skeptical, too.” I was surprised to hear this and asked him what changed his mind. He said that some of the other neuro-otology specialists, including Dr. Hain, had convinced him to try some of the vestibular migraine treatments on his patients. He did, and his patients started coming back to him acting as though he was some sort of miracle worker because they felt so much better.

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#8

@Manatee, THANK YOU SO MUCH, I will do that, I appreciate all the information. I was feeling hopeless! You have brought a glimmer of light to me…thank you!

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#9

I’m hoping to have botox, as nothing else has worked abd i can’t seem to tolerate meds. Did you find that the botox helped with dizziness? Sorry i can’t offer any recommendations, i live in the uk.

#10

@Onandon03, thank you, I posted a little more info below, sorry I was so general with info was having an extremely bad day. I am researching and will travel to see a specialist if I have to. I am on the east coast, central part of Florida but am desperate to get relief. I have had chronic daily migraines for 20+ years, the very first doctor put me on opiates which were taking a toll on my body after 11 years of use and my gastroenterologist highly suggested I stop them, which I did last year. Now the headaches are full force again and nothing seems to help. I am so tired of hurting.

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#11

@Chanel, I just dug up the email from Dr. Hain’s office with his recommendations for specialists in Florida. Here are two other names he recommended. I have no personal experience with either of them.

Dr. James Atkins, Celebration, Florida:
https://www.adventhealth.com/find-doctor/doctor/james-atkins-md-1255355442

Dr. Joshua Light, Boynton Beach, Florida:
http://entsf.com/our-physicians/joshua-p-light-md

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#12

@Manatee, oh my gosh, thank you! Those locations are close enough!!!

#13

Sorry, didn’t mean to interrogate you. Pleased that @flutters and @Manatee have rescued you. Helen

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