I realised that the essential MAV reading material is scattered around this forum in different areas and that people are probably not seeing it easily. The search engine is not exactly user friendly. And so I’m listing the stuff that I think should be read if you’re a newbie or just a refresher for people who have been here for a while.
Start with the [size=110]MAV Survival Guide[/size] and then read [size=110]The Ten Commandments of MAV[/size] (sticky posts) … and then these:
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This is the paper you should read if you’re sitting on the fence and don’t believe you fit what is typically thought to be a person with migraine. It’s also the paper you should take with you to your doctor. It’s written in doctor language (aimed at Australian general practitioners) yet is easy for a lay person to understand.
[size=110]Vertigo and migraine – ‘How can it be migraine if I don’t have a headache?’[/size] MedicineToday 2011; 12(12): 36-43
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Migraine Fact Sheet from Dr Hain’s office in Chicago authored by Marcello Cherchi, MD and PhD.
[size=110]Migraine Facts[/size]
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Written by Drs. Michael Teixido and John Carey at Johns Hopkins Otolaryngology. A very good summary of what this is and how to approach management. There’s a page describing the migraine diet and also a page about vitamins and dietary supplements. They recommend our forum!
[size=110]Migraine – More than a Headache[/size]
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This is a more detailed examination of migraine and discusses the chronic form – from Dr Nicholas Silver
[size=110]Headache and Chronic Pain[/size]
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Evidence-based guidelines (24 April 2012) for health professionals in the US covering the pharmacological treatment for migraine prevention in adults. Use this to look at the drugs used to increase migraine threshold.
[size=110]Evidence-based guideline update 2012 for pharmacological treatment of migraine[/size]
So one of these papers says a positve diagnosis of MAV you should test negative for everything else and have no unilateral or bilateral hearing loss. Well, I had a positve ECOG (now normal, interstingly enough) and a positive VEMP with high frequency hearing loss in one ear but my doc still says MAV. He says 1/3 of MAVers have hydrops. I’m confused. Now he says I have a vestibular imbalance and still thinks MAV is causing it. He says nothing about the hearing loss except that I do NOT have Meniere’s because it is always low frequency hearing loss and very progressive where my hearing tests have looked exactly the same for the last 5 years. This is all very confusing and depressing
Your doctor is right, for Meniere’s you need low frequency hearing loss. Don’t worry about high frequency hearing loss, I have that too (quite a lot actually), as do a lot of people. An enjoyable, misspent youth (loud music), genetics and the aging process are likely culprits.
True. What I’m concerned about is that one ear is normal and one is significantly worse. I am 39 years old and my baseline hearing for both are not great (loud music I’m sure) for my age and the one ear with the hearing loss is that of a 70 year old person.
High frequency hearing loss hear too and permanent tinnitus from dance parties and rock concerts. One ear worse than the other. Don’t think I’d be too worried about that.
what does your tinnitus sound like? I’ve recently developed it. Hate the fact that most of my mate’s were wilder than me during the party days and nothing like this junk happened to them. Why me? LOL
Scott - great idea to have these important papers in one place. Often trawled through the forum looking for that elusive paper I read recently - recall memory isn’t what it used to be!
Don’t know whether Jem’s report of her visit to Dr Surenthiran fits with these. I found Dr S’s description of the migraine brain very easy to understand and have given copies to my family & G.P. (without Jem’s name of course).
Barb
Scott–great idea–thank you! You are full of great ideas to make this site more helpful and to make good information accessible.
Leslie–I didn’t read (or re-read, more likely) these papers, but I seem to remember from my past readings (including a forum on which a balance/dizziness testing expert answered our questions regularly and knew a LOT about migraine) that migraine CAN indeed damage hearing and the vestibular system. So your doctor might not really be off-track.
I too have high-frequency hearing loss in one ear (although in my case it was a sudden loss due to sneezing, probably causing an inner-ear stroke). Having worse hearing in one ear is NOT going to be caused by noise exposure or normal aging (unless you had some serious noise-exposure event that only or primarily affected one ear).
I presume you’ve had an MRI with gadolinium contrast to rule out the (unlikely) possibility of an acoustic neuroma. With one-sided high-frequency hearing loss, they definitely should have considered that.
I never had ECOG or VEMP. I did have ABR (a.k.a. BAER, BAEP, etc.)–evoked potentials to test the hearing nerve, and it was highly abnormal on both sides. I think that abnormality is due to migraine activity over time. (Doctors never addressed this, but recently I did find info that ABR can be abnormal in migraine.)
If one of these papers (which I didn’t read/reread) said hearing loss is not included in the diagnostic criteria for MAV, or suggests something other than MAV, I don’t think that means that the presence of hearing loss excludes MAV.
I also think there’s a lot the doctors don’t know or aren’t sure about yet… and I also think there are lots of atypical cases out there. (Of all kinds of diseases, MAV included.)
That’s just my non-expert opinion. But it sounds to me like your doctor might NOT be off-track.
P.S. to Leslie–if your hearing has not deteriorated in the past 5 years, I think that’s a great sign. Mine hasn’t changed significantly since the sudden severe one-sided loss in 1999. That’s gotta be good news.
