Your Top MAV questions - post here!

Hi All,

Following on from Lisa’s idea of the top MAV questions we all have, I had an idea that I would put together what I thought were the best “top 10 Qs” to post to Dr Rauch to have as a great resource for all of us here. I sent an email to Dr Rauch today and got a really fantastic response from him. I was really happy to see that he regards our forum very highly – and it’s all because of all the great input you all make here. I will definitely take his advice and follow up with the other neurologists he suggested. Here’s what the correspondence was and then I’ll post the 10 Qs I put together last. We can edit them and refine this list. Let me know what your thoughts are. S :smiley:


Scott-

I am a big fan of your forum and refer all my MAV patients there. In fact, I consider one of the key features of a MAV diagnosis to be the process of patients reading the bulletin board posts at your site and self-identifying as MAV. I am honored to receive your invitation and I’d be happy to try answering your “top 10 MAV questions.” I don’t know if you’ve considered it yet, but perhaps you might have several different specialists answer each question. I would certainly be interested to read responses from Michael Halmagyi (Sydney, AU), John Carey (Johns Hopkins, Otolaryngology), David Zee (Johns Hopkins, Neurology), Timothy Hain (Northwestern University, Chicago), and Joseph Furman (Univ. of Pittsburgh), Hannelore Neuhauser and/or Michael von Brevern (Berlin).

-steve

Steven D. Rauch, MD
Professor, Otology & Laryngology
Harvard Medical School
Mass. Eye & Ear Infirmary


Dear Dr Rauch,

I am a moderator of a forum that deals primarily with migraine-associated vertigo (MAV). The forum has been online for approximately 5 years now and has a support link from Johns Hopkins. You are well-respected on the fourm and your information is often cited. The forum can be found here: (our site address appeared)

I understand you’re a busy man but was wondering if you might have some time to answer a “top 10 MAV questions” list put together by the board members (there are over 300 members). It would be a great post to have for reference to questions that appear time and again from an authority such as yourself. We make a point of keeping the forum grounded in the best scientific, evidenced-based information. We also make a point of telling members to always consult with their physicians no matter what advice they may receive on the forum.

I would be very grateful for your feedback.

I look forward to your reply.

Best regards … Scott


And the questions so far which has turned into a “Top 12”:

— Begin quote from ____

  1. Have you seen long-term MAV cases who when finally treated with a migraine preventative for a lengthy period of time, go on to be MAV-free minus that med? In other words does MAV ever just permanently burn out with the aid of medication and remain so after removing the medication?

  2. It appears that many people who come down with vestibular neuritis (VN) or labyrinthitis frequently go on to develop MAV (reported many times on the forum). Do you think VN or labs precipitates MAV and, if so, why?

  3. Is a person with MAV who has previous inner ear damage or disease (VN, labyrinthitis, etc.) less likely to recover more quickly and more fully than those who do not? Likewise, are males or females more likely to have a favourable prognosis (i.e. permanent remission) perhaps because of fundamental differences in hormone levels?

  4. Why can MAV initially be intermittent at the onset (brief episodes with long symptom-free periods), and then be followed by constant intractable symptoms that can be continuous for years if left untreated?

  5. Are flu-like symptoms, fatigue, and aches and pains all part of a common set of symptoms associated with MAV? Why?

  6. Do you believe that bruxism (night clenching) plays any role in causing, promoting, or reinforcing migraine via stimulation of the trigeminal nerve?

  7. Is IBS common among your MAV patients? Any idea what the link is with migraine and IBS?

  8. What are your thoughts on the underlying deficit producing the symptoms of migraine? Do you agree with current thinking that it may be the result of various channelopathies brought about by genetic errors? If so, do you think associated disorders such as IBS, CFS-ME are also a result of the dysfunction brought about by these errors?

  9. Which medications do you personally favour for MAV? It appears that other professionals in the field all seem to have differing opinions from Effexor to Topamax to the older tricyclic antidepressants (some neurologists describe TCAs as “messy agents”).

  10. Anecdotally, all of the SSRIs appear to work very well for MAV but not migraine per se according to the science literature. Do you promote SSRIs more frequently for people with vestibular migraine? Have you personally noticed their efficacy in MAV patients?

  11. What medications would you suggest to someone who only has very occasional headaches but has all of the other typical MAV symptoms on a daily basis that vary in intensity for no apparent reason: dysequilibrium, visual disturbances, light sensitivity, brain fog, aura, fatigue?

  12. Do you find that drug monotherapy is usually enough for treating MAV in your practice or does it usually require multi-pharmacy to eliminate all of the symptoms?

— End quote

Brilliant Scott. I am sure, one of the questions we would all be interested in is if different drugs suit individuals better, eg. those who already have insomnia, or depression, or fatigue etc. I went through so many meds years ago, I wiped out a couple of years of my life completely feeling ill, trying one after another. In the end, I didnt try anything for 20 years, it would be nice to get the correct one after just one or two attempts.
Thanks
Christine

Scott - that is great. I am really extremely curious to know what meds he suggests. I believe you had that question, though.

Scott,

I think this is a great idea and very promising that Dr. Rauch was so willing to participate and supports the board. I’m even more thrilled that he mentioned MY doctor on his list! :o

Thanks! Will post more soon but so far, I like the questions on the list! Cheers, Bonnie

I am very surprised to read this kind response from Dr. Rauch. He is the doctor who other doctors go to when they have “dizzy” problems in the New England area. It will be very interesting to read his responses.

Sally

OK guys, thanks for your comments … it looks like I’ll be sending 12 questions now because I think they’re all really important. I don’t think Dr Rauch will mind.

BC - yup, I’ll do exactly that to encourage their participation. I’m sending them tonight. Stay tuned for what I hope will be an invaluable resource for the forum.

Scott 8)

Scott - Not sure if you sent out the mass email yet, but I emailed you regarding it and contacting certain docs. Never the less, I’m sure some will respond and I look forward to hearing their answers to the questions (although I will bet that some may contradict each other/give varying responses.)

Thanks Bonnie – I’ve only sent them to Steve Rauch at this stage. Just sent you a reply. S :slight_smile:

Thanks Scott!
Wow! The questions all look great. I’m really interested to see some of the responses. This is a great site. I wish more doctors were aware of it :slight_smile:

Terrific set of qhestions Scott!!! I was JUST thinking about the flu like symptoms as I have definately struggled with those very symptoms for years and I do not have fibromyalgia!!! I will look forward to his responses
Thanks for all you do for us Scott!!! :mrgreen:

Pam

I echo the appreciation of others. Scott, this is great! Thank you.

wow, what a fantastic guy Dr Rauch seems! Thanks for doing this Scott.

Great Job Scott

Be curious to hear his response

Awesome Scottie,
Thanks for working so hard on our behalf.
Lets hope the other Dr join in too.

also Thanks Lisa :smiley:
jenx

Great job (as always) indeed!

A Big Thanks to you Scott! Much appreciation for your hard work.

Joe

Hi @scott , can you help direct me to the answers you found to these very well thought ou questions? I have my f/u with Dr.Rauch in a week or so but would like to take a deeper dive into this.

Scott was leader here for years but hasn’t posted now since 2018 so it’s unlikely you will get any help here.