How did doctors conclude you have MAV?

What I want to know is how doctors diagnosed your MAV ? were all other tests normal?
I just find as this seems to be a relatively new condition and I have heard sceptisim about its exsitence although I believe it does exist.
Whats the evidence ? all internet searches I have done say its episodic not constant so what do we have according to that? hmmmmmmmmm

Hi Blondie,

Mine was diagnosed based on the history and a BPPV attack –– I also noticed how certain things triggered it.

There is overwhelming evidence for migraine associated vertigo. I would suggest you tell someone who is skeptical to read the medical literature. You might like to have a look through the archive here on mvertigo under “SCIENCE & RESEARCH – PAPERS FROM THE LITERATURE”. Then check under the MAV forum there (http://www.mvertigo.org/forum/viewforum.php?f=2). Remember what Robert Baloh from UCLA said: dizziness is the second most common symptom following headache in people with migraine.

Chronic Migrainous Vertigo

Some authors have described patients with vestibular symptoms persisting for days to weeks in the setting of migraine. Chronic motion-induced dizziness or vertigo lasting many months or more in the setting of migraine has not been clearly documented or characterised. This study was a retrospective analysis of the clinical and laboratory abnormalities in **[size=120]a group of subjects presenting with chronic vertigo [/size]**that was thought to be of migrainous origin.

Migraine related vertigo: diagnosis and treatment

“The duration and frequency of MV episodes are highly variable among patients and may change over time in an individual. Vertigo may last from seconds to weeks, but most commonly lasts minutes to hours. Often the acute rotational vertigo lasts hours or less, but motion intolerance and unsteadiness persist for days. Most are completely free of dizziness between attacks, but [size=120]some patients develop a constant sense of motion intolerance or visual vertigo with intermittent episodes of rotational vertigo[/size]. The frequency of attacks is irregular and may occur days to years apart, chang- ing in frequency without apparent cause or in relation to migraine triggers. Most commonly, patients report attacks somewhere between monthly to yearly.”

http://mvertigo.cloudapp.net/t/migraine-related-vertigo-diagnosis-and-treatment/1791

Scott 8)

Thanks Scott just to clarify I do believe this condition is real . I was speaking to someone who said they had been diagnosed and after a year of searching finally got diagnosed with MAV by someone who knew what they were doing as ENTs doubt the exsitence of MAV , maybe they all need to go back and do some training.
But what I do know is that the lady I refer to got 100% better off propronol and VRT combined.
Where do you stand on VRT ? It seems very beneficial even to MAV sufferers who probably started off with something else although not always .
Im learning all the time with this illness Im going to London next week for the best testing in the UK so hoping I get the correct diagnosis.

Thankyou for your reply very informative

First link=>“Page Not Found.”
Second link=>damned good article.

I was diagnosed because I didn’t quite trust the neurotologist who diagnosed Meniere’s and proposed sac surgery, and got on the waiting list for Johns Hopkins for a second opinion. I just received the report, and can share the diagnostic conclusion.

"Assessment:

"He has a history of a single episode of prolonged vertigo followed by fluctuating disequilibrium without further episodes of frank vertigo. I think this is likely not Meniere’s disease particularly given that he does not have a fluctuating low frequency sensorineural hearing loss. I do appreciate the abnormal electrocochleagraphy result, however the raw waveforms were not available for my review, so I would not make a conclusion based on the ECoG result.

"He has fixed hypofunction on the left based on the head thrust test and 2 caloric tests. I would note that it is very unusual for early Meinere’s disease to produce this pattern of dysfunction; again the argument is against Meniere’s disease.

"Of note, he has a history of headaches that began simultaneously and has since then had fluctuating disequilibrium associated with his headaches. He reports associated photosensitivity and motion sensitivity. He has found that cutting out chocolates and caffeine has definitely improved both his dizziness and his headaches. I think all this argues more likely for him having migraine-associated vertigo. . . "

Blondie,

I have been diagnosed with just about all the major dizzy disorders at one time or another. It was a neurotologist who told me I definitely don’t have Meniere’s and with almost all certainly do have MAV. I believe the reasons being are 1) hearing is normal at low levels, though there is a moderate loss at high levels; during my vertigo attacks there is no change in hearing 2) between vertigo attacks I have constant feelings of motion sickness and suffer from extreme motion intolerance 3) I do have tinnitus but it is no worse during a vertigo attack 4) ENG showed inner ear had no vestibular loss (though this isn’t a 100% case against menieres), it did show there were central problems.

I must admit I am somewhat of a skeptic when it comes to MAV as being a “real” disease, or maybe I am just not 100% convinced that is what I have. When the ENT diagnosed me with Menieres he put me on a diuretic and lo-sodium diet. In the year following the # of severe vertigo attacks decreased dramatically. The neuroT took me off the diuretic and told me I don’t need to go with lo-so (though I did increase my sodium intake I was still taking very little). Two weeks later I had a horrific vertigo attack and six weeks later another. I am now back on the diuretic. The nueroT refuses to believe the diuretic has anything to do with it.

I found the following on another website (dizzytimes.com). I hope it’s okay to copy this here. If not, let me know Scott, and I’ll delete it. Tom Boismier, who works at an Ear clinic in Indiana is extremely knowledgeable in this field and often posts answers. Someone asked how to tell the difference between endolymphatic hydrops and MAv and this is part of what he wrote -

Bottomline, it is extremely difficult to tell the difference between the 2 disorders based upon a single round of testing. If the problem is left untreated, eventually it will become obvious which folks have EH/Meniere’s becuse of the progressive hearing loss pattern. Most folks don’t want to wait that long. Our approach has changed somewhat since this article was published. We now often will treat folks for BOTH disorders with simultaneous conservative measures. Once they are better, we ask them to stop the treatment they hate the most. Most stop the EH low-salt diet. Most stay well by staying on migraine control.

There have been some recent studies suggesting that vestibular migraine and EH/Meniere’s may have similar roots. In that case, simultaneous treatment makes even more sense.

. . . . . . . . .

Using the strict definition, required to reach the diagnosis of idiopathic endolymphatic hydrops / Meniere’s - at least 3 disabling spontaneous attacks of rotary vertigo lasting 30 minutes to 24 hours. Tinnitus, fullness and hearing fluctuations localized to or worse in one ear. Documented unilateral low-frequency fluctuations in hearing on serial audiograms. There is often unsteadiness and/or motion provoked dizziness between spontaneous attacks, but this is not required to reach the diagnosis.

Migraine - unfortunately, just about any balance, auditory, visual and tactile symptom you can think of above the neck, and a few below. Migraine can almost exactly mimic Meniere’s, though it is far less likely to produce the characteristic low-frequency fluctuations in hearing. Migraine is oftan associated with migraine-type headache. Meniere’s is not associated with headache. Migraine often produces visual aura symptoms, Meniere’s cannot. Sensations on the scalp, face or extremities (tingling, burning, numbness, electric-shock) can occur in migraine, but not in Meniere’s. I could go on for a long time …

Hey Blondie,

Sorry, I wasn’t trying to say you doubted MAV exists. But I do hear that some ENTs as you pointed out will say this. Note, that Dr Steve Rauch is an ENT and is probably one of the most knowlegdeable people out there on MAV. I don’t think it’s the ENT specialty per se but maybe a lack of understanding by the individual and those particular doctors not staying current with the literature.

David - linked fixed. Thanks

Book – no problem posting another peice of text as long as you credit where it came from. I agree with all that you posted re MD versus MAV. In fact, last week while looking over a number of posts at the Meniere’s forum I think many over there actually have MAV and were misdiagnosed. No doubt there are some with both but I imagine that must be very rare.

Just curious here: what is it that makes you skeptical about MAV being a true disease state?

Cheers … Scott :slight_smile:

— Begin quote from “scott”

Just curious here: what is it that makes you skeptical about MAV being a true disease state?

Cheers … Scott :slight_smile:

— End quote

Scott, it may be because it is a fairly “new” disease. or maybe it is because so many doctors don’t embrace it, or worse, haven’t even heard of it. When I asked one of my ENT’s about it he said, “oh yes, many people have both migraine and Meniere’s.” But of course I wasn’t asking him if I had both, I was asking him if I had vestibular migraine and he had no clue what I was talking about. Or maybe because there is no real test for it other than trying meds or trying the anti-migraine diet and if something works than you have found and solved the problem both at the same time. And so far, none of that has worked for me. I kind of question how can they say someone has MAV if they can’t see it in a test.

Or more likely, I may just be skeptical that in my case I actually have MAV because the diuretic really seems to help me and that leads to a Meniere’s diagnosis (and I don’t want a Meniere’s diagnosis!!!).

— Begin quote from “bookworm”

Using the strict definition, required to reach the diagnosis of idiopathic endolymphatic hydrops / Meniere’s - at least 3 disabling spontaneous attacks of rotary vertigo lasting 30 minutes to 24 hours. Tinnitus, fullness and hearing fluctuations localized to or worse in one ear. Documented unilateral low-frequency fluctuations in hearing on serial audiograms. [size=100]There is often unsteadiness and/or motion provoked dizziness between spontaneous attacks, but this is not required to reach the diagnosis[/size].

— End quote

I was under the impression that unsteadiness or motion provoked dizziness between attacks was a symptom of MAV rather than meniere’s and that was one way to differentiate between the two - with Meniere’s one feels okay between vertigo attacks but with MAV one doesn’t. Has anyone else heard of this - either being symtomatic of one or the other?

book

Hey Book,

it may be because it is a fairly “new” disease.

I think MAV has likely been around for eons really, at least as long as migraine arrived on the scene. Given that it affects 10% of the population, it must have been getting its claws stuck into people a long time ago, long before anyone was able to define it. The only reason it seems new is because it is finally being recognised albeit slowly. The problem seems to be as Baloh put it, that no one has the time or resources to do more work on MAV. They haven’t even added dizziness to the IHS criteria yet! There must have been literally stacks of people who, over the centuries, would have been locked away in psychiatric institutions with this condition as it would have caused severe and untreated anxiety and depression we all know so well.

or maybe it is because so many doctors don’t embrace it, or worse, haven’t even heard of it.

This is because migraine at this level requires specialist training and I think as Lisa once told us, most don’t get this level of training in neurology. Your average GP just doesn’t know it.

When I asked one of my ENT’s about it he said, “oh yes, many people have both migraine and Meniere’s.”

I’m skeptical about this but then we do know that dizziness from other causes can trigger a migraine and, if 10% of the population are migraineurs, it does stand to reason that a chunk of people with Meniere’s would also be dealing with migraine as a complicating cofactor.

Or maybe because there is no real test for it other than trying meds or trying the anti-migraine diet and if something works than you have found and solved the problem both at the same time.

Yes, this seems to be the case a lot of the time –- that it ends up being a diagnosis of exclusion. However, there are different “types” of migraine that do make a dx must easier such as menstrual migraine, or migraine with aura for example.

I kind of question how can they say someone has MAV if they can’t see it in a test.

It’s very good to be skeptical I always say. You’re right that there is no test like a blood sample or something we can image to diagnose MAV or migraine yet but it is so well studied and the symptom-set so well described that we can safely say that migraine is a real entity, just like depression or anxiety for which there is no blood test etc. Even Alzheimer’s disease cannot be diagnosed for certain until a sample of the brain is sampled after a person has passed away.

Or more likely, I may just be skeptical that in my case I actually have MAV because the diuretic really seems to help me and that leads to a Meniere’s diagnosis (and I don’t want a Meniere’s diagnosis!!!).

That is odd. Perhaps you do have some MD happening but that seems very unlikely given the normal hearing test results. When the migraine meds don’t have any impact it sure is confusing and disheartening. Have you been through the whole gamut of migraine meds?

Scott

By testing and more testing :frowning: I had all the tests at the ENT at Oxford and also saw a neurologist at Oxford. Then went on to London, to Luxon, then, after the ENT testing, she referred me on to Prof Goadsby. I have had 3 lots of ENT testing, some abnormalities showed up but their final diagnosis was vestibular migraine (oh and an inner ear lesion with endolymphatic hydrops).

Christine

Christine
How did you find the testing at London ? im seeing Luxon next week and terrified but want to get through these tests to get a diagnosis.
Im most worried about he rotary chair? the ENG Ive had before and it was horrible but only lasted a few minutes .

Blondie x

I had a bunch of tests eleven years ago, that found really nothing, just a slight vestibular deficit in one ear. No one knew anything about my symptoms. Eventually got sent to VRT which seemed helpful. Four months ago this came back, and I searched on the computer for anything. Found this site and could not believe there were other people with my symptoms. Went to four doctors and eventually got diagnosed with vestibular migraine, close enough for me. Did some lifestyle changes and diet changes, plus some low-dose nortriptylene and I feel 90% better. Now when I do get a flare-up, I can tell the difference between the flare-up and my regular imbalance.

Well I’ve finally got my copy of the official report by the neuro-otologist at Queen’s Square (Dr D. Bamiou), and I must say I would really appreciate any help in interpreting the results!

I’m not going to copy the whole report out here but summarise the main bits:

Impression
This lady has got a classic presentation of migraine related dizziness with features in both hearing and balance tests consistent with this diagnosis, as well as with the consistent clinocal presentation.

Well that’s pretty easy to understand. It’s the test results that are a bit confusing to my poor brain at the moment (just run 5 K at gym in hope it would make me feel better but I feel yucky):

Otological Assessment
otoscopy and tympanometry - normal.
pure tone audiometry- low frequencies slightly down in both ears but normal thresholds
Transient evoked ot-acoustic emissions: Absent with left ear recording, normal with right ear recording
ABR - bilaterally normal and symmetrical

Vestibular Assessment

Everything normal (gaze test, patch test, convergence, smooth pursuit, saccades, Halmagyi head thrust, OKN, VOR SUppession, Romberg’s TEst, Unterberger’s test) - well that’s nice to know!

BUT WHAT DOES THIS MEAN?:

*ENG - First degree left beat spontaneous nystagmus in the absence of optic fixation, as well as first degree right beat spontaneous nystagmus in the absence of optic fixation. Right directional preponderance on rotation test with reversal of left beat (to left start rotation) to right beat nystagmus.
*
So it seems to me all looks pretty normal except I don’t understand the ENG result. I’m guessing this isn’t normal - can anyone help here - is this the ‘balance test’ result consistent with the MAV disgnosis?

My GP hadn’t a clue!

Oh and good luck Blondie on the rotary chair test - it wasn’t so bad and they help you through it. Everyone was so nice and kind there too! :slight_smile:

DizzyIzzy

Hi,

The rotary chair was OK. I have replied in a lot more detail to your PM.

Best wishes
Christine

Scott,

Thank you for your response. I agree with everything you say. I think my skepticism is more about my own disease rather than MAV in general. I do think it is a real disease, I’m just not 100% convinced that is what I have. Though I will say, when I first heard about MAV 2-3 years ago I was *so relived *because I felt I finally found something in which all the symptoms fit, particularly that of a constant feeling of motion sickness. But not I understand this can also be a symptom of Meniere’s. AAARRRGGGHHH.

I’m trying to get my money saved up so I can make a visit to Dr. Rauch, also getting my courage together for a 3 hour drive.

Book

My ENG is the same, I have the results from 11 years ago and I have no earthly idea what they mean, except that I may have a deficit in (maybe) my left ear. Not even sure that is the bad ear! When I get the mini-spins, the world does spin to the left, though.

My ENT and my neuro told me that MAV is beginning to be talked about more and more. My ENT says he is seeing more people who come in for sinus problems with dizziness and it ends up they have migraine because nothing is wrong with their sinuses. And my neuro says that is the big topic is one of his journals this month. I was glad that my neuro had the up to date view on migraine having to do with CSD, and he got out a poster of the head and showed me all the areas it can affect. He asked me if I had motion sickness when I was a child and I knew I had come to the right place because all of the information on here talks about that too.

Hi Amy,

That’s encouraging news that your docs are getting more familiar with MAV and its diagnosis. Do you happen to know which journal your neuro was talking about? Would be great to post a link in here so we could all have a look.

Cheers
Vic

For my chronic dizziness they thought I had an inner ear deficit. So I went through all the physical therapy and noticed no improvement, so this eliminated anything with the inner ear. Then saw a nuerotologist who concluded that it had to be MAV because it had to do with the brain. I’ve been on medication for 10 weeks and have noticed significant improvement. I have to conclude that it is MAV that I truly have. It is good to know what you have and no there is a treatment! I feel for all of you who are having trouble finding the right treatment.

Hi santana
Hows the nori working out for you? I have had to discontinue it for the time being to have these tests done with no medication .
I shall hopefully be back on them next week . What dose are you on now ? and whats changed for you Im seeing a neuro-tologist next week . I know she likes propronol the best but i want to see her thoughts on the nori aswell .
I hope your chronic dizziness has gone or going Im so hoping that day will come for me I go away in May and hope to get on a good med before that or I will just be miserable.