Is this condition rare or not?


I have been pondering this for a while and seeing as it’s cropped up topically, I thought I’d ask the question now.

Scott, when you say that migraine affects 16% of women and therefore you are 3600 times more likely to be suffering migraine than a CSF leak, I understand why you say this.

But whilst we say that yes, 16% of women experience migraine, we’re not also saying that 16% experiencing the ‘big bang’ of sudden vertigo and their world is never the same again are we??

Because that experience seems to be the one thing that the majority of us here has experienced and brings us here. At our London meet yesterday, all 4 of us at the table had all had a period of stress in our lives, followed by a sudden onset of vertigo which has lessened but never really left us.

I would have thought that particular experience, being able to pin-point when the vertigo started, generally, is rare. I have never heard of anybody outside of this forum experiencing this.

Something in our migraine brain changes and we go from episodic migraine to chronic in seconds. And we now present with vertigo and other strange symptoms that we mostly didn’t show before.

**Surely sudden onset of chronic migrainous vertigo isn’t experienced by 16% of women in the world?

I’m not here to argue at all- I’m just trying to understand everything and am confused as to whether what I am experiencing is rare or not. In some sense it would seem it is, and perhaps others it is not at all.

I also wonder if most people experience the vertigo suddenly one day out of the blue or if it is a gradual process? I tried to do a poll but I don’t think I have the user permissions.

MM x

I agree with you MM. 16% of women may suffer from migraine but my understanding is that of that 16% a tiny, tiny proportion experience complex, chronic migraine…with persistent 24/7 vertigo and dizziness so the 16% statistic isn’t directly applicable to the condition of people on this forum…my guess is it is more like 0.005% of the population that have a condition like ours…that’s only my interpretation but all I know is that I can name loads of female friends that suffer classic or intermittent migraine but if it weren’t for this forum would never have met someone with the same condition as me…my understanding and confirmed by Dr. S and other neurologists is that this is incredibly rare!!! I am happy to be Proven wrong on this point!! Xx

I am in the ‘out of the blue, one day my life changed and I felt dizzy which I never had before’ category. Until I got this I thought ‘vertigo’ was a fear of heights, I had never heard of people getting vertigo which meant they felt dizzy and possibly had spinning sensations. Did not even know chronic dizziness existed and never gave any thought to how we keep balanced (down to my very unscientific brain) and have never met anyone in person with the same thing as me. One person at my work had BPPV for a month then it resolved and I only found that out after I got dizzy. Otherwise my experience is that this migraine with vertigo is rare but I suppose there are a fair few people throughout the world who have it and collectively on forums like this it feels like it isn’t that rare. How lucky we are!!! x

before I had this chronic onset of vertigo, I have had episodes in the past of vertigo, but only lasting up to 5-6 weeks each time.

THe weird thing is, I have had stressful situations in the past where I haven’t been hit by migraine or vertigo though… its a bit strange in all honesty, why its hit me now… when i should be having the time of my life…

Its almost like our brains dont want us to enjoy ourselves!

I would like to know what % of people who start out with an initial vestibular problem go on to later develop MAV? I started with a barotrauma initially and I think the MAV developed a few months later- my specialist (who is a surgeon at a world famous eye and ear hospital) only said “it was a coincidence” that I developed this…um, obviously not a coincidence- but what is the % who get this double whammy? Just to share, my mother had labs when she was 19 and she recovered fully (and never developed MAV in the 50 years that followed). Lucky for her because if she did develop MAV back at 19 there would have been no treatment available to her because I don’t think the dx existed then!!!

Thanks Dizzie Lizzie- you summed that up much more eloquently than me- my head is currently all over the place and my sentences are a jumbled mess.

Complex, chronic migraine with persistent 24/7 vertigo… That’s what MAV is right? Add a typical sudden onset to it… That’s got to be less than 16% of women. Surely. I am so confused. :oops:

Just a quick response as it is waaaay past my bedtime (watching Homeland - gripping! )

One thing my Neuro said to me (which did help me accept the diagnosis) and which really resonated was “Migraine changes over time.” So, we may have Big Bang events, or we’ve always experienced migraine as discrete, short term events, or we’ve only had one or two migraines, years ago, or they were really low level… whatever. True, most migraineurs don’t experience migraine chronically, like we do. How it manifests isn’t, per se, the issue. Migraine is really common. Start asking around outside this forum and you will hear lots of migraine stories with a huge variation in presentation. And many people don’t even realise (or can’t accept) they are migraineurs. Many are still stuck with the idea of ‘excruciating headache’ and that’s it. Vertigo is emerging as the second most common symptom after headache.

That’s a really good point actually Victoria and I think very important to recognize to migraine changes over time.

However, I would argue that it is an issue in how migraine manifests itself. If migraine presented in me, as 2 huge classical headaches a month, I could get on with that and live my life. But to be 24/7 dizzy is very disabling as we all know.

So whilst migraine is common- transformed or not- the fact that ‘our’ migraine particular form presenting in chronic status with vertigo of a sudden onset, still seems quite rare anecdotally at least in my experience- no GP’s I’ve been to seem to have heard of a similar case to mine, no friends, family or colleagues seem to have heard of a similar case to mine, etc.

Lets face it, it appears to be difficult to treat and if it is rare, then you wouldn’t be an idiot if you considered at some point, other rare illnesses such as csf leaks or Lyme disease if you did not get better with migraine medications and lifestyle adaptations.

I totally agree that it is dangerous NOT to accept your migraine diagnosis- it really is. But if you do not get significantly better** after **a long period of time on migraine drugs and after many trials, it might be worth investigating other avenues such as those suggested. I am not sure why that suggestion has recently descended into a state of chaos and got so out of hand. Maybe I missed something? I guess people are passionate.

Then again, I could be entirely wrong- perhaps this manifestation/variant of migraine is much more common than I think- there are a lot of us here after all. I guess it’s impossible to find numbers or percentages.

It’s just all a little confusing. :oops:

If the drugs arent working for you MM, I know a sure fire way to beat this illness… become an alcoholic :smiley: just never become sober… then its gonna hurt!

Kfdskfjsdkfsjo fsdiofdhsofhis dfihsdofhsdfiosdf sdhiodhf siodfh … hic hic hic :lol:

Yes it is rare to have daily persistent headache with vertigo. That’s why most of our neuros have never seen it or seen it rarely in their careers.

At the end of the day, I just want to know if what I have is very rare, rare, or not rare. Mainly because I am narcissistic and like to be told I’m special :slight_smile: But also because people seem to be dropping by to say they got told they have something else rare that isn’t MAV. And are in turn, told here that MAV is more common. There have been 2 incidents of that in as many weeks.

It makes no difference really to me, I strongly believe in my MAV diagnosis and think it is dangerous to continuously question your diagnosis unless you have strong reason to- such as Lizzies visiting a high endemic tick region and remembering a bite, amongst other reasons.

If after a significant amount of time I am not better, I too would look at different diagnosis’ especially if my insurance plan covered it. That is being sensible. And as humans, we are always seeking answers.

But I do find it slightly uncomfortable that people seem to being bashed for saying others should bare a particular different diagnosis in mind if they don’t get well from MAV treatment. And I was confused by the 16% figure- though I now understand where it came from after Victoria’s explanation of migraine as a changing beast. Though I think it would be useful to look at a percentage in terms of those with chronic persistent vertigo with sudden onset.

On the same hand, I think the people who come here and say these things, should be careful, and make sure they talk in a clear, logical way rather than seem to suggest that every single doctor ever has an ulterior motive and be careful not to scaremonger and suggest that “nobody has MAV and you should all get tested instead for X/Y/Z”

Blimey, we should all swallow some chill pills. I’m off to down mine with some champagne at a jazz club. After a long nap. :smiley:

Amen MM!!! xxxx

Hi MissMom and all,

A systematic review was conducted in 2010 and appears in Cephalalgia about the global prevalence of chronic migraine (Global prevalence of chronic migraine: a systematic review. Cephalalgia. 2010 May;30(5):599-609). It may be as high as 5.1%. Now, approximately 16% of women have migraine and of those 25-30% experience migrainous dizziness or vertigo (Prof Steve Rauch). If you do the maths, this is affecting a hell of a lot of people.

How we define “common” is another matter and is subjective. Is CSF leak common at 5/100,000? Is Meniere’s common at 200/100,000? What about migraine in women at 16,000/100,000 (16%)? The “common” cold must be common. It’s in the title and affects nearly 100% of the population.

While no one here is saying that every case of unexplained dizziness is migraine based, the statistics MATTER though we have heard from one individual who feels they don’t. I strongly disagree. If a person has unexplained dizziness or vertigo and has had other peripheral and central causes ruled out such as MS, Meniere’s or BPPV, the first port of call should be migraine. If after following the migraine lifestyle and failing on multiple migraine medicine trials then it obviously make sense to look at other potential causes such as CSF or Lyme disease. Note these two latter conditions frequently but not always come with clear non-migraine indicators that can help pinpoint them.


Just to complicate matters further… it is of course entirely possible to have more than one thing going on - migraine plus something else. Particularly as we know migraine is easily triggered. As Lisa mentioned in another thread, she may be experiencing migraine in addition to (triggered by) Lyme.

Years ago I had optic neuritis but was also indescribably and concurrently ill for weeks. On the road to getting diagnosed with ON I had many doctors suggesting to me it was chronic migraine. I insisted that was not possible, that my migraines were discrete events. These doctors advised me that migraine could last a long time and that they’d had patients hospitalized with it for weeks. Based on subsequent periods of chronic migraine I now believe I had ON AND migraine (the ON was and remains a confirmed diagnosis, the migraine part is inferred). Similar episodes have happened since (and on reflection, previously) - sick with something which triggers concurrent migraine. The happy news is that if you can address the other trigger, the chronic migraine may also resolve.

— Begin quote from “Victoria”

Just to complicate matters further… it is of course entirely possible to have more than one thing going on - migraine plus something else. Particularly as we know migraine is easily triggered. As Lisa mentioned in another thread, she may be experiencing migraine in addition to (triggered by) Lyme.

— End quote

Very good point! And Howie with what appears to be Meniere’s and MAV.

Migraines are common

People who get dizzy from migraines is quite common.

MAV Is a very broad term. What we all have on this forum (chronic mav) is very rare. Being dizzy 24/7 from migraines is very very rare.


Interesting thread.

I fall into the group Victoria mentioned. Initially I had a severe traumatic event which kick-started the migraines and unknown to me for many years, also SCD and an aneurysm. The migraines (classic definition w/regular type of visual aura) increased over time. Had the aneurysm fixed which drastically lessened classic migraines but inadvertently worsened SCD. MAV symptoms began. Had SCD fixed. MAV worsened. So, on a bright sunny day with high barometric pressure I’ll have MAV symptoms (disequilibrium, oscilopsia, ear pressure, etc) plus feeling like I’m tilting left (but not really) which is residual SCD surgery stuff and pressure pain where my skull was cut open & healed.

Anyway - interesting thread.
Best to all ~ Molly

What we have is rare. Of course it is. Thats why nobody knows about it or has heard of it. Thats why there are only a few people in the world who treat it

Dizzyness caused by a migraine isnt rare.


Good point Rob. Wow didn’t we all hit the jackpot getting this thing! :lol: