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MAV, diagnosis of exclusion?

As I’m sure a lot of you here know that MAV is becoming a much faster diagnose in the medical world today for unexplained dizziness than anything else, even with people who have never had a migraine headache before. I was talking to a doctor who had a different take on it and doesn’t quite agree. It was one of those online doctors so I don’t know who he is.

He stated that he has talked to many people online who have this diagnose and complain to him that even after knocking out common migraine triggers they still have no relief. I asked him if he thought anxiety would be the culprit then. He said that anxiety used to be the diagnose of exclusion but does believe anxiety can keep it going longer and make it worse than it should. He also said that migraine doesn’t make sense to be the only thing going on here because no other migraine symptom lasts daily for months and in some cases years on end. He said “imagine having a hard pounding headache or flashing lights for like 9 straight months with no break at all. Not buying it that migraine is the only thing going on here.” (those are his words not mine)

What was really interesting though is that he said that he believes that this particular dizziness (Constant dysequalibrium/swaying-no spinning vertigo) is separate from everything and could be an unnamed illness all by itself and probably triggered from things like anxiety, migraine, Mal de Debarquement Syndrome and other’s. He said Migraine is a popular diagnose right now and that’s what the people are getting.

Last thing he said was that they don’t really know why people stay dizzy like this for so long. Somewhere in the vestibular system, there’s a glitch and it just stays like this for a while. Most of the time it goes away on its own. There’s just no telling when.

So what I really got out of our 30 dollar conversation, was that he didn’t really know why I’m dizzy daily. But what he stated here was pretty interesting and I just thought I’d pass it along to all of you. An unnamed illness with multiple causes. Isn’t that interesting? He actually made some sense I thought.

Greg

1 Like

Greg,
I totally agree. Migraine is such a broad spectrum, and it does encompass a lot, but I think there’s something else at play…for me, I think it’s a glitch in brain chemistry. Mine might have been brought on my a viral attack (Bell’s Palsy) or stress, and then I went over a threshold and now have 24/7 issues and I have to control the symptoms with medication.
There were times when human maladies were unknown, and psychiatrists would have to deal with these things and the mental anquish that they brought on. For instance, for women, menopause and all it’s glory…they used to think they were crazy, but now endocrinologists and gynecologists handle the hormonal changes and do what they can to help. MIgraine used to be a psychiatry issue, and now it’s a neurology issue. The unknown stuff gets thrown on to the psychiatrists until the root cause is figured out. I had a long talk with my psychiatrist about all this.
I do think there will one day be unveiled a more specified reason for this…in the meantime…we take it day by day. But thank you for the post!
Kelley

1 Like

Probably is a brain chemistry issue more than anything, cause a lot of people get better with antidepressants. That explains why for so many years the docs said it had to be anxiety.

I don’t mind the migraine dx, cause that just tells me that they are still trying to figure out what this dizziness actually is and they’re still working on it. They didn’t just stop at anxiety if you know what I mean. They weren’t comfortable with that being the reason so they’re still trying to find out, and now they seemed to have stopped at migraine for now, but I think one day they’ll be moving on from that too. I don’t think they’ve figured it out yet, but I think they’re getting closer and closer. One thing they do know is that anxiety triggers this and so does migraine. It sounds like they’ve found probable causes to something that has yet to be determined. That doc really got me thinking. :shock:

Plus they’ve linked migraine and anxiety together somehow, so they seemed to have narrowed the dizziness down to a specific area there. They’re getting close. Scott has posted on somewhere here a picture of how they’re linked and it’s a pretty neat picture to see.

Greg

Greg,

I think you’ve raised a really important point here. Yes, the MAV diagnosis is still quite ‘new’ and is perhaps being over-diagnosed now? I really don’t know. I know my condition isn’t anxiety-related, as I’ve never had any such problems before, and I was in a relatively easy, happy, settled part of my life when this all kicked off. Of course having lots of vertigo did make me anxious at times, but only momentarily, and I take beta-blockers for it now, which make me very chilled out. I just don’t like things being blamed on anxiety as although I accept that some people do have dizziness caused by anxiety I strongly believe for lots of us that anxiety is a symptom brought on by the dizziness and it’s not the root cause.

But going back to his comment about not having a pounding headache/flashing lights continuously, then I would say I have had migraine headaches pretty much consistently for weeks/months on end (mine have always clustered into spells like this) so it is possible to have that almost constantly. Of course, it was not so extreme all the time that I was in agony, but I have had spells of having migraine headache coming and going every day, with a slight feeling of an aura *all the time *for weeks. This is more common when people take a lot of painkillers as they get rebound headaches, so get into a permanent cycle of migraine.

My other thought about a MAV diagnosis is that it’s only really proven if you can get your condition under good control by avoiding triggers and taking medication. And then if you stopped the meds and did all the things that might trigger it and saw if it came back again? I’d rather not try that though…

And my final thought is that there is still a lot that is not very well understood in this area, and so in the future some people on here may be re-diagnosed with something new, perhaps when new conditions are identified or technology improves so that there are more tests that can define what exactly is going on?

beechleaf,

The way he was trying to explain to me was that he agreed that all these things had sparked off the dizziness like migraine, anxiety etc., but the dizziness in itself is a whole different illness that should have it’s own identity with more explanation to it. Kind of like how smoking sparks off lung cancer, but the smoking itself is not the cancer. Many other things like working in a coal mine also spark lung cancer. But cancer is the main culprit and bottom line.

The migraine sparks the dizziness, but it is not migraine that is the dizziness. Anxiety may spark it off, but also is not the dizziness. I guess he was just saying that there is something else there with the dizziness that they don’t know yet. But have found numerous causes of it. He just doesn’t like how it’s called migraine alone and that alone. Which I thought was a great way to put it.

I was surprised when he mentioned Mal de Debarquement Syndrome. Cause that is kind of what he’s talking about. Does everyone with that syndrome have migraine? I don’t know. I doubt it. But that’s clearly brought on by a boat ride.?? But yet it is the same type of dizziness a lot of us have without the boat ride. And funny enough, they don’t know a whole lot about that syndrome. Mainly all they know is the symptoms of it and that’s it. I could be wrong though. Scott probably knows if they know a lot about it or not, but from what I’ve heard is that they don’t know squat really. Interesting stuff.

Greg

FWIW, my thinking on the migraine/constant dizziness connexion is that migraine-induced inner ear ischaemia causes actual damage to the vestibular system – probably in some cases the peripheral endorgans. Then the constant dizziness sets in for the same reason it does in other vestibular conditions, because there’s an imbalance in input reaching the brain and it takes a while for the brain to compensate. If you have migraine, maybe there’s a defect in the compensation mechanism so you never quite get there, and by the time you’re close, you get another migraine-induced injury that starts the cycle all over again.

BTW my neuroto also talks about MdDS as being a migraine variant. I think that is becoming a common way of thinking about it.

Well put fizzixgal!!! Migraine causing repetitive injury to inner ear. But wouldn’t that cause actual spinning vertigo too? The main topic I was asking him about were my specific symptoms and spinning vertigo has never happened to me. Just rocking/swaying and false movement. Or is there other parts of the inner ear that control the spinning part separately from the rocking/swaying part? Like 2 different area’s in the inner ear, each with there own responsiblity. I don’t know if I explained that correctly. I know hearing is in a different area in the inner ear.

Greg

Greg,

Some of us diagnosed with MAV or Vestibular Migraine do get the Vertigo. That is the way my Mav began was with very late at night vertigo episodes(while sleeping)…i would wake up with a severe spinning for about a minute and this would make be very sick and i would visit the bathroom. After 18 years of this crap…i’m about 70% better…somedays maybe 75% and i don’t have the severe vertigo like i once did…just a small half spin sometimes. I"ve improved my eating/drinking habits, reduced the stress considerably and try and get 8 hours or more sleep at night but for some reason i cannot get back to 100% normal. I still have 24/7 motion and tension in my head. I personally believe i have some malfunction of the inner-ear …including the silent migraine like condition.

Joe

— Begin quote from "beatles909"

Well put fizzixgal!!! Migraine causing repetitive injury to inner ear. But wouldn’t that cause actual spinning vertigo too? The main topic I was asking him about were my specific symptoms and spinning vertigo has never happened to me. Just rocking/swaying and false movement. Or is there other parts of the inner ear that control the spinning part separately from the rocking/swaying part? Like 2 different area’s in the inner ear, each with there own responsiblity. I don’t know if I explained that correctly. I know hearing is in a different area in the inner ear.

Greg

— End quote

Well the cochlea is the hearing organ and the semicircular canals and the otoliths (saccule and utricle) are responsible for sensations of motion and orientation. So theoretically you could have damage limited to certain areas, and sensations of rocking and swaying are typical of otolith problems. But unilateral damage to the semicircular canals usually does cause spinning vertigo – it’s when it’s bilateral that you often get chronic dysequilibrium and dizziness, and especially oscillopsia. As with so many things inner ear, the exact symptoms are somewhat nonspecific; you would need a detailed workup by a good neurotologist to distinguish bilateral vestibular damage from otolith dysfunction.

In my case I’m pretty sure I have damage to the cochlea and the utricle (gravity sensor) – the cochlea on the left side, not so sure about the utricle. It could be bilateral and I do occasionally get little pings of pure-tone tinnitus in my right ear too, so there could be damage on that side too. I also have mild oscillopsia at times when walking. I’ve never had sustained spinning vertigo either. I had a short, <30 second spin a couple of years ago as a first symptom and then no spontaneous vertigo at all since then, so I’m pretty partial to the theory that I had some kind of stroke or vasospasm that caused lasting damage. But everything that’s come since then is very hard to sort out, and I strongly suspect that the way my migraine brain processes information is hopelessly entangled with whatever distorted signals are coming from the peripheral sensors.

Hi Gregg and everyone else,

What a great post and such an interesting thread. I think what the doc told you is very true. Many docs will not use the term MAV unless the patient meets strict criteria and that is usually met when people have attacks of vertigo and periods of normalcy in between. So, in those cases the migraine (which is usually self limited and does not last for years which many of us have symptoms for) causes the vertigo and false motion sensations and when the migrainous attack is over the patient is symptoms free until the next attack. I have spoken to docs who will diagnose the rest of us 24/7 people with a central dizziness dysfunction and no, they cannot as you explained say for sure what causes it other than saying it is from the brain. I doubt they think it is peripheral as there would be overt signs on exam so they agree we are dizzy froma central cause. As far as MdDs, 30% of cases are believed to be spontaneous according to the lead researchers in that field so a motion experience is not always a pre-requisite. I feel doubtful of the MAV diagnosis in many people, however I do not think it is a psych diagnosis. I believe there is some central dizziness syndrome. We only have a limited number of meds to treat all of these conditions regardless of what we call it and I remain hopeful for many that a med will tone symptoms down a bit or over time a person will recover on their own.

Lisa

fizzixgal,

Is there any way they can fix the utricle?? Maybe through surgery or something. Does it not heal itself? Can they see inside the utricle with some kind of tool or something? Sounds like all you need to do is fix the utricle somehow. Easier said than done I’m sure. If migraine constantly nags at it and you get the migraine under control, will it heal itself over time? Would VRT fix it? I know I just asked you abouth 1000 questions, sorry about that. But you seemed to have narrowed down something I’ve been trying to figure out for a year now and now I’m anxious to know more about what you know about this.

Greg

Lisa,

Very interesting thread!

Personally, I believe this is a predominantly migraine-based illness with overlap from MM and MddS. And of course, some unlucky people appear to have more than one of these conditions. For those who only experience dizziness, it must be hard for a specialist to separate this from a case of spontaneous MddS as Lisa described. While it’s definitely possible that there could be something else going on (possibly as yet unidentified) in some people with these symptoms, I’d like to hear the doctor’s hypothesis on this rather than having him just throwing it out there that he doesn’t buy migraine. It comes across as armchair criticism to me because he cannot or won’t accept the current best evidence-based model. Perhaps there are different types of migraine just like there are different types of cancer. There will never be one cure for cancer; rather, there are treatments for specific types of cancer. In migraine, and as far as I’m aware, there are those who have problems with the function of calcium channels while for others it appears to mainly be a serotonin issue for example.

I don’t get the feeling he understands migraine as we know it. He said, “imagine if someone was seeing flashing lights or had a crushing headache 24/7” and remarks that other migraine symptoms don’t go on non-stop. That’s not the way migraine works. In chronic cases, it’s cyclical and can bring on aura at times that lead to headaches which are self-limiting. They just keep coming for some people with periods in between of feeling unwell and unbalanced in those whose balance system is affected whether it be centrally or peripherally. Other diseases that affect the balance system often leave a patient with residual balance issues for weeks if not months while the brain compensates – this is common with BPPV and VN. With this line of thinking, cyclical migraine that impacts the balance system could easily leave such a person feeling off-balance and therefore unwell 24/7 with no end in sight as long as the migraine activity is allowed to continue. He also said that some of his patients report that after knocking out common triggers, they see no relief. The main problem with this statement is that for many migraineurs, the common triggers are not their triggers! As Bernstein puts it, ANYTHING can potentially be a trigger for a particular person with this junk. Isn’t it possible that he is citing people who 1) never figured it out or 2) for whom juts getting out of bed in the morning is a trigger? Rauch makes a point of making sure a person is checked out for any other diseases or illnesses that may be triggering this – someone may have a food intolerance setting them off for example.

I wouldn’t agree with this being “new” or in vogue, nor do I think that there’s anything unusual about a chronic case of migraine. Looking at the current evidence, migraine is a very well-researched disease in terms of quite clear epidemiology. There are clear genetic linkages emerging. If we are to believe this is something entirely different then why does this illness respond to migraine medication so well for most (even if it is a nightmare finding the right one)? For all we know there are literally thousands and thousands who successfully rid themselves of this quite quickly with trigger avoidance and migraine meds. We are but one sample of tough cases on this forum and very likely do not represent the overall migraine population. Migraine symptoms are also often accompanied by typical known symptoms such as sound and light sensitivity which distinguish this from MM. Such people are much more prone to anxiety and depression – the hallmarks of a hypersensitive migraine brain. Autism comes to mind when thinking about the “new” tag. One of the reasons autism spectrum disorders have increased over time is because the disease is becoming more well-recognised and more well-defined with scientific investigation and so more individuals are recognised and included in the dx.

My two cents! :smiley:

Scott

Scott,

Well put. Too bad you weren’t in on that conversation with us, as you could have probably educated him a lot more about our conditions here. You got a pretty good hold on what migraine actually is and probably more than most doctors in the world. I just thought that his opinion on it was different and something I haven’t heard of before. Hell I was surprised he knew what MAV was. When I asked him if he didn’t think it was migraine, I thought for sure he was gonna say it was just anxiety. That’s why I asked him if he thought it was anxiety, cause if he were to say that, I would’ve ended my session with him right then and there.

But he didn’t so I had to hear him out to get his opinion on it. Unfortunately my time ran out with him and I didn’t wanna pay anymore cause he pretty much gave me all I needed right there. But you would’ve loved to talk to this guy and shoot some of what you know at him and he probably would’ve shot back with other stuff he knows too. That would be a pretty good conversation. I’d love to see that one. I’d imagine you’d get the best of him though cause I doubt he’s got the knowledge you got after you’ve been on the research for so long on migraine alone. You may have made a believer out of him too, you never know right.

Everyone that chimed in on this post had some really good info as well as you too, and if you look at they’re posts, you can see they line up with yours in explanation for the most part. Still waiting to hear back from fizzixgal on a few things but that’s ok. I think you explained it nice and full to me there. Some stuff I knew but not all.

Thanks everyone. Who knows, maybe this fella will find his way to the forum… I kicked myself after our session for not informing him about the forum. Sorry about that.

Greg

— Begin quote from "beatles909"

Is there any way they can fix the utricle?? Maybe through surgery or something. Does it not heal itself? Can they see inside the utricle with some kind of tool or something? Sounds like all you need to do is fix the utricle somehow. Easier said than done I’m sure. If migraine constantly nags at it and you get the migraine under control, will it heal itself over time? Would VRT fix it? I know I just asked you abouth 1000 questions, sorry about that. But you seemed to have narrowed down something I’ve been trying to figure out for a year now and now I’m anxious to know more about what you know about this.

— End quote

Wow. You know, I’ve never really heard of any surgery to fix the otoliths. The thing is that when peripheral vestibular damage of almost any kind is stable, and the brain’s compensation mechanisms are in good working order, the brain will eventually sort out all the mixed up signals. So I suspect (though I’m not 100% sure) that there isn’t a lot of incentive for surgeons to develop that kind of surgery, since most people eventually compensate well enough to make the risk of any surgery a lot greater than the risk of doing nothing.

The problem comes in when there are recurring insults and the peripheral organs aren’t stable, then the brain is never able to catch up, or not for long anyway. What I’d like to know is whether it’s understood what is going on in migraine-related vestibular disturbances. Is the reason so many of us never compensate because our dizziness is due to repeated peripheral damage? Or is the problem with the central apparatus? Or both? The ENG/VNG can often differentiate between central and peripheral issues, so I would think this is at least somewhat known. One fact is that migraineurs are usually made worse by VRT, even over the short term, which points to a problem with the central processing part of the system. But some of us gradually do adapt and feel normal again at least for a while, until the next rough patch hits. So I wonder if it isn’t a combination of mechanisms at work.

Really just thinking aloud here… I know I didn’t really answer your question. One person who might have the answer is Tom Boismier, who does research on dizzy patients somewhere in the States (I think). He answers questions from members over on Dizzy Times.

Hey Greg,

Glad you brought this to the table. It’s a very good topic. Too bad we couldn’t have the good doctor elaborate on his thinking here so we could see if there was any meat there to get into. I wonder if he is just speculating or does he have any clinical evidence or anything from the literature that he bases his opinion on?

I’m totally open to any new way of defining this or explaining WTF this is we’re all dealing with but I need to see some plausibility and/or a hypothesis --or better some evidence – that makes sense to me and fits. He could very well be right that it’s not just a migraine problem (beliefs held in science and medicine for a very long time have been known to be wrong before) but given the current evidence from lots of different areas (including mvertigo) I think migraine is the most likely culprit for most of us.

Wouldn’t it be great if there was something else overlooked all this time and there was an easy fix? if the fix was a bucket of charcoal daily I’d be eating it for breakfast right now. :lol:

Cheers … S

Scott,

Get this, I have customer that comes in my store who buys a certain type of incense and eats it because she says it takes her stomach pain away. I think she’s absolutely nuts, but she swears by it. She’s a little old lady, it’s hilarious. It got me thinking, you need charcoal to burn incense right-you may be on to something here with the cure of charcoal, although I think we might get some nasty side effects! :lol:

Fizzixgal,

Sounds like it most likely is a combination of central and peripheral for some. Maybe it starts off in the central processing and over time damage is made to the inner ear and then you have them both acting up. Once you get the central part straightened out, the inner ear starts to repair and then it’s all over.

Or, the inner ear acts up first and then the brain tries to compensate and compensation causes chaos in the whole central processing and because of our migraine brains we’re never able to fully compensate and then you’re stuck in the cycle, and then you get hit with another inner ear migraine and it just never ends until one day there’s a break in it all (remission).

You answered my questions just fine. Thanks!! :slight_smile:

Greg

Or here’s something else Greg – dizziness per se has been shown in a controlled trial to trigger a migraine reaction! Try to get your head around that one. In other words, if you have migrainous vertigo and I fire water into your ears and induce dizziness that will almost certainly kick off a migraine reaction resulting in all sorts of neurological symptoms. For me, it explained why the caloric test left me completely destroyed for 6 weeks afterwards in 2003. The initial response for me was severe anxiety followed by crushing headache and derealisation. In those days I hadn’t realised that valium was a good weapon. I was also not on an SSRI.

So you can also see from the above that a person with a migraine brain who also happens to have MM can have migraine attacks kicked off from MM attacks. It’s all very messy stuff. It also helps to understand why VN or BPPV wakes a sleeping migraine vertigo brain.

The above experiment was more likely to cause a very bad reaction in people with migrainous vertigo.

Scott 8)

Scott,

Wow, that is some shitty shit. So the migraine causes the dizziness and in return, the dizziness can also trigger the migraine. Sounds like a wheel that just keeps going round and round. Well one day that wheel is gonna run low on tread and go flat and then we’ll all be alright.

I wonder if there is anything to vestibular therapy with this. I read on a website called VEDA that the dizziness gets worse when you first start the therapy, but then over time, you start to come around. I know there’s a lot of worry here that in migraine sufferers, it makes them worse only and doesn’t get better over time. I tried VRT for about 4 or 5 weeks, but I quit. Now I’m jogging everyday, which I know is form of VRT (I also do 20 min on the elliptical), and my symptoms are definatley acting strange on me right now. I’m worried I’m getting worse from it, but there are times I feel better than I did before and I think I’m doing the right thing.

I’ve been doing it about 9 weeks now, although I came down with a cold on the 5th week in so that kind of set me back, but my symptoms are like a more intense rocking and swaying and heavy head. But they come and go throughout the day. The more intense is what I’m worried about. But my head actually feels very clear. These balance symptoms just go up and down all day and I’m a little worried… And when I’m not symptomatic, I feel almost normal again, which I never felt almost normal before I started the jogging. Should I change something or keep sticking to my plan. I think it’s working and then I think I might be causing more damage. What do you think?

This just started happening about 2 weeks ago.

Greg

Greg – daily aerobic exercise is supposed to be a very good migraine preventative but overdoing it can also be a migraine trigger. I think you have to find the right balance for you. Perhaps you need to chill for a day or two and then get back into it but not as long or intensely? The elliptical should definitely be giving you some good exercise plus some VRT. I think you’ll just have to experiment and see what works best.

I am very exercise intolerant right now which sucks. If I overdo it, I will get absolutely slayed the next day with head pain and flu-like symptoms. I really miss running and jogging.

S

Yea, I’m gonna have to do something a little different.

Thanks Scott

Greg