Thanks all for the responses and suggestions. This helps me so much!
This is awesome. I currently don’t use mine because mine is constant nag, plus I’m a wuss with side effects.
I’ll look into this for sure as well as the thread on Angela’s book. As for my PCOS, doc says mine is mild, I don’t have the insulin resistance or anything, so I’m not taking anything for that as of yet but I’m being monitored.
Here’s hoping. I need to do more research on the side.
I’m technically treating my severe PCOS with metformin. The real surprise is that metformin turns out to be the best MAV prophylactic so far.
In line with low carb dieting.
I use Benfotiamine and / or Berberine when I eat carbohydrates or drink alcohol.
Really? That’s interesting. Which doc prescribed that?
Endocrinologist
2 posts were split to a new topic: I’m now 80%!
I don’t think you “get better” per se, but rather that you come to understand the condition and learn to live around it. MAV is a brain state and is therefore not ‘on’ all the time (for most people anyway), and so it comes and goes. It’s like saying has anyone “gotten” better from their headache? I know MAV is not simply a headache obviously, but you don’t actually get better do you? There are triggers to avoid and things that make it worse.
As far as “without medication” is concerned, that’s very interesting. I thought at first this website was sponsored by a pharmaceutical company because all the writers seemed to be in favour of medications. I think it’s interesting that the medications seem to be a hit & miss affair for MAV unlike most conditions where a specific medicament treats a specific ailment. MAV is much more elusive, like psychological conditions, and like those, there are a variety of pick’n’mix drugs one might use.
I myself favour supplements and ‘the migraine diet’ to prescriptions but I suppose it’s all down to choice and whatever works. Like the aforementioned mental health conditions, MAV seems to be so hard to treat and there’s also a placebo component to the medications as well. C’est la vie.
Sorry I have to disagree. Many do improve to a point where they can come off medications are no longer limited by MAV. See my post above for examples. Also to add to my post I recently spoke to the head of the London NHS oto-neurology clinic at the Royal ENT and she told me that most people get better but admitted that for a small proportion it doesn’t and those remain on symptom control medication.
Admittedly, complete cessation of symptoms has yet to be reported on here (specifically tinnitus). I am very close though.
It would be really nice to hear from people who were on this board 8 years ago but they simply don’t post anymore by and large.
There are over 4000 people registered on this website. Ask yourself how many still post here and why that might be?
Some of the older members from here are very active on the Facebook group.
Success in the MAV universe is defined as going from chronic to episodic. Most still have episodes and follow trigger management
Yup that must be true. I imagine some members followed Scott to Facebook. It would be nice if they did post an update though (many people have an understandable aversion to Facebook especially when it comes to sharing sensitive health information on it, my God!)
But again (Facebook or no) the active posters may not represent the majority? If you are a poster it suggests you are still suffering by and large. If you are not, who knows but it sure suggests MAV isn’t really bugging you any more?
Oh yes indeed. They were invited to move with/follow. About 2013. Remember that because that was when I first found this site and was on point of registering but didn’t bother because I don’t do Facebook (Founder Member of the Aversion Society me) Strangely enough I’d misread the title as ‘my vertigo’ and thought that’s for me. At that point I’d never heard of ‘Migrainous vertigo’ or MAV, or had an idea I was a migraineur. So I just melted away.
Both the founders of mvertigo still have episodes of vestibular migraine even within the last 6 months. But they have gotten to a point where they can pinpoint triggers. Once a migraineur always a migraineur.
Not all MAVers are life long migraineurs I suspect. I am not but was still diagnosed as such by top oto-neurologist.
It all comes down to whether or not your condition is lifetime chronic or not (mine is chronic but it’s not congenital)
If one is not a migraineur I would argue the diagnosis of VM could not be applicable and it was something else all along. One simply cannot heal away from migraine. You can keep a lid on it but not eradicate it.
You do what you have to do.
Exactly. I don’t want folks here to beat themselves up because they are not healing. You follow the treatment pie for migraine(google it) and keep a lid on things.
Absolutely!
One thing I’ve noticed browsing on here is that many of you have symptoms more or less constantly I tip my hat to you 
My symptoms have got worse Recently but aren’t constant, I tend to suffer in waves then I’ll be ok for a couple of weeks then I get a few terrible days- I don’t Think I could cope with the constant dizzy / nausea feeling that so many of you seem to be battling. So strong
Get medicated or work the migraine pie steps (hydration, diet, sleep hygiene, supplements, meditation, exercise). With the exception of those of us who have had a distinct trauma to the ear or head, most of us have home grown VM that started episodic or was bad when we were young and then went it remission for a decade or two before coming back - first episodic then chronic and constant. If you can arrest that progression while still episodic, you can save yourself a lot of pain and suffering.
I went chronic a couple of years ago after 25 years of more or less episodic VM symptoms. It would have been useful to know what VM was when it first sent me to the ER at 24 rather than at 44.
PS - Welcome Jools. We’re glad you found us.
Thanks-
I’ve heard supplements mentioned a fair bit-that’s not something I’ve tried as yet- what levels and of what?