Hello Everyone

Hi everyone! I’ve been following the posts for a while but have just joined the forum. This seems like such a friendly place that I thought I might be able to find some support here.

I’m 54 years old and I’m pretty sure I have migraine and MAV, although I’ve never been diagnosed. I’ve seen ENT doctors who have never been able to pinpoint a diagnosis. My last attempt was several years ago, and at the time I’d never heard of MAV and never had it mentioned to me by a physician. When I was in my early 20s I would have problems with my eyes; the best way I could describe it was that it felt like my eyes were “pulling in my head”. Then, after my son was born, I had an episode of vertigo that turned into a year-long episode of dysequilibrium. This would go away and then return, each time for several months at a time.

Now that I’m menopausal, I get episodes of vertigo that last for hours at a time. This isn’t “spinning vertigo” but problems with head motion. This morning, I woke up with what I call my “migraine headache” but I was also dizzy. I didn’t feel dizzy until I stood up, and then when I’d move my head I’d have a fuzzy, falling feeling. This is usually how my vertigo presents itself. For me, it’s not very common to have the headache and the vertigo at the same time. Makes for a great day.

The headaches are “headaches that don’t go away with medicine”. I can take two Advil every hour to keep the pain at bay, but it never completely goes away until the headache burns itself out. This can take several hours. There is a strong history of migraine in my family. My grandmother had pretty classical presentations with vomiting, and so does my daughter. My own usually don’t include vomiting, but today I’m feeling a little queasy along with everything else. I’ve only vomited once during a migraine headache.

I know this can’t be anything like a brain tumor, etc., because I’d have been dead by now. And I kind of feel like a sissy even being concerned, because my symptoms seem very mild compared with some of yours. But it’s still scary.

Does this sound like it could be MAV? I’d appreciate any feedback.

Donna

Hello there and welcome,

I’ve had Mav for 9 years and although obviously no one other than the right doc can give you a definitive answer, imo it looks like a pretty cut and dried case of MAV to me. For a long,long time a lot of doctors, particularly GP’s and ENTs were very ignorant about this condition. I spent the first year or so being fobbed off by ENTs who thought I was stressed or anxious. Luckily I ran in to someone who knew about neuro otology departments - they specialise in dizziness and finally got a diagnosis. More doctors are learning more about this condition all the time but it’s a slow process. If you last saw some ENTs a number of years ago,chances are they won’t have had a clue. I am now seen by a neurologist who is probably the best person to treat this condition.

I don’t know if you are looking for further help from a doctor? If so I would recommend seeking out a neurologist who knows about this condition and would be able to help you with daily preventative medication. Long term taking too many drugs for pain can actually create a problem of rebound headaches, depends how many you take and how often.

As you will know yourself from the history you have given, this is a hereditary condition. With such a strong migraine chain in your family and this type of history of vertigo/dizziness, the chances of it being anything else are relatively small, especially as the doctors you did see didn’t pick up on anything else.

If you want to see a doc and say where you are - US or UK etc, then someone should be able to point you in the right direction.

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Hi everyone! … [snip] … Does this sound like it could be MAV? Donna

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By chance, do you have any problems with your hearing? Have you had it tested. Some people say that problems with your ear balance may be connected with MAV.