The Vestibular Migraine Community
Please read our welcome post!

Is MAV common?


#1

is MAV common? ive got lots of friends and associates all over England and some in differents parts of the world and ive never came across anyone that has MAV or even a form of dizziness if it wasn’t for this site I would feel one lonely person! has anyone came across anyone that has had MAV or a form of dizziness??


#2

HI Melly. I have 1 person at my work place that had suffered some form of vertigo/dizziness for 10 years. The doctors couldn’t explain to him what was wrong with him. He swears it was a pinched nerve and when he got his vertebrae fused he gotten better. My current doc also has an assistant that runs the test on the weekends for patients. She said she was diagnosed with Meniere’s and she had surgery done and she said she gotten better. I also have a co-worker who has Lyme disease supposedly the symptoms are closely related to mav but all she has is migraines and nausea.


#3

Hain says it affects 1% of the population? Which seems high to me given I’ve met very few people who have had chronic dizziness.

https://www.dizziness-and-balance.com/disorders/central/migraine/mav.html


#4

James, is it 1% of the migrainous population which might be significantly less than 1% of general population ?


#5

One of my clients swears his sister in law has it, but my neurologists hadn’t met anyone else like me and they are part of a major university. But for you guys, I’d go crazy.


#6

I re-read Hain’s page, and have concluded it is in fact 1% of the wider population.

Personally I have met three people with chronic dizziness and other symptoms in my life so far (with a MAV like syndrome), but of course I’ve met people who have claimed they had had Meniere’s too … and who knows they have been diagnosed using older critieria …


#7

My aunt gets episodes of vertigo especially when she’s stressed. I’ve wondered if she has MAV that isn’t chronic.


#8

Over the years I never told many people about my “dizzies.” Because mine has become more problematic over the last couple of years, I’ve told more people about it and have found out that a couple of them have had dizzy disorders. One says that she has Meniere’s (and from her description I’d say she does), and another most likely has MAV, from what she described to me.

Most of the people that I’ve told don’t really get it. When I tell them that I’ll be seeing a new doctor later this month, they assume that the doctor will give me a pill and I’ll be all better. Then I explain to them that no, this will be the fourth highly-specialized specialist that I will be seeing, and probably my fourth diagnosis. Then they look at me like I’m crazy…


#9

thanks guys for replying it seems there is very few people out there then that’s proberbly why ive never came across anyone! its nice to hear the few people that some of you have met have become better :smiley: theres hope for us all then yayyyyy


#10

I encountered for the first time last week someone else officially diagnosed with MAV.

It happens to be my manager who works in the office next door to mine!

He actually collapsed in the bathroom at work a few months ago and was incapacitated by vertigo, nausea, and confusion for several minutes (literally couldn’t get to his feet). His doctor thought it was a vasovagal attack but after a repeat episode he diagnosed MAV.

I did immediately wonder if there was some environmental cause, but upon reflection, I think the common link is likely to be high stress caused by the job! (my neuro-otologist told me that MAV is preceded by high-to-extreme stress in nearly all his patients.)

My mother has not been formally diagnosed with MAV but she gets very similar symptoms to me, and many other relatives experience migraine.

I suspect MAV is actually quite common but widely underdiagnosed.


#11

My VRT says she’s met 5 others.


#12

I’ve been wanting to add to this for awhile now:

  1. My sister-in-law developed a MILD case of BPPV last year. I didn’t even think to suggest that was her issue because her only symptoms were mild dizziness when lying down and after first getting up. She called it a “nuisance” and could work and function normally. The BPPV cases I had heard about were so severe so it didn’t occur to me as a possibility for her. She got the Epley maneuver done and has been back to normal. I did warn her once it happens once that she’s more likely to get it again.

  2. My mom has a friend who’s cousin had vestibular migraine. She was treated by a neurologist at Johns Hopkins, not from the dizziness clinic that I went to there, and it sounded like she was leading a fairly normal life. I could have called her and asked her questions but my case is so much more severe, and also I don’t know her so it’s kind of awkward.

  3. My PCP says she has one other patient with it, but since this patient can still work she says that I “must” have something else. face palm

  4. Another one of my sister-in-laws had a friend who had Mal de Debarquement syndrome (MdDS). She asked me if I thought that was what mine was as the symptoms are similar…no…it’s not.

So there are some cases and similar issues going on out there, even though I really don’t know anyone directly with vestibular migraine. I have come across at least 3 middle aged women who get bouts of true spinning vertigo, but their episodes last a few hours to days and they’re back to normal and I believe that’s all they get symptom wise. And they are so few and far between, much less frequent than any migraine.


#13

my grandfather was diagnosed with Menieres in the 1960s which he had for 2 years before making a full recovery (he was in his 50s). was it menieres or MAV?

my mother has an unspecified vestibular problem which causes her on and off dizziness (most days) and severe imbalance. this started in her mid 70s. it could be MAV but she’s on so many pills for thyroid, blood pressure, etc that its hard to tell.

i have a close friend who has had MAV-like symptoms for 17 years and was diagnosed by Dr Surenthiran with MAV but she also has Ehlers-Danlos syndrome which causes her major structural neck problems, so MAV could be secondary i.e. brainstem migraine caused directly by neck impinging on brainstem. she’s booked for major surgery in November.

i have a friend at work who has occasional dizzy spells and imbalance exactly as i used to before the MAV truck hit me. fortunately his has not progressed to anything worse.

loads of people have Episodic MAV i.e. they get something like MAV but it lasts only minutes to hours.

Chronic MAV is only a small subset of episodic MAV, like Chronic migraine is only a small subset of migraine. 10% of the global population get migraine at some point in their lives. very few (don’t know %) get chronic, recalcitrant migraine.


#14

Yeah he doesn’t seem to make this distinction. In fact ‘acute’ vs ‘chronic’ MAV is not discussed much. Nor is ‘5 year MAV’ vs ‘Lifetime MAV’ …


#15

Lifetime MAV sounds depressing


#16

Yes, but in my experience thus far, probable.


#17

I think my friends just think its all aload of jargon, it gets quite depressing that theres no one I know who can back up how miserable this actually is!


#18

@mellybob chronic symptoms can wear you down…when it is bad it consumes you…when it is good you forget how bad it was…so write down your ups and downs and you can use that to know a bad patch will pass.

What is your major symptom ? Mine is imbalance while walking and ocassional episodes of lightheadedness


#19

Get your friends really drunk then make them walk… Then if they throw up, you can say, see how nauseous you get from being so dizzy?

But realistically, it’s very hard to find people who actually understand or they equate it to anxiety issues, or they take the head in the sand approach saying this will pass, yet they’re not dealing with it in that moment of time so they can easily say that without the fear you’re currently feeling. I learned the hard way with my family from that.


#20

I find the phrase ‘progressive disabling neurological condition’ fairly effective. I also use the terms chronic, baseline and relapse. Sometimes, it’s just about using the big words. Then I liken it to a lesser version of MS, which is very well known here in the U.S. Pacific Northwest, because we are, unfortunately, an MS hot spot.

Then I come here and talk to you guys to preserve my sanity.