MAV (Migraine Associated Vertigo)

Thought it would be useful to list some sites for people that possibly have MAV instead of MM or a combination of the two.



http://www.emedicine.com/ent/topic727.htm

http://www.dizziness-and-balance.com/disorders/central/migraine/mav.html

 

A good forum to look at with lots of info for mav is

www.mvertigo.org

 

I have been diagnosed as having "silent" vestibular migraines, or migraine attacks in the inner ear. This type of migraine has been known to cause actual physical damage to hearing and balance organs.

I have found the best information so far on about.com. There is a ton of really good information about MAV on this site, an "ask the clinician" feature, and information about medications, etc. I found most of it helpful. Sometimes I have to refresh the page a few times before the content loads; there is some bug on that site. But it's worth the effort.

http://headaches.about.com/od/migraine101/a/MxInfoCtr.htm


"Actually, Migraines aren't technically headaches. Migraine is a genetic neurological disease characterized by flare-ups or attacks that occur when we encounter triggers. Those attacks may or may not include a headache. If they do, the headache is just one symptom of the Migraine attack. There are no tests that can definitively diagnose Migraine disease. It is diagnosed by reviewing a person's family and personal medical history and their symptoms and conducting a physical exam, including a neurological exam. Sometimes, tests such as a CT scan or MRI are ordered to rule out other conditions."

"The aura is the most familiar of the phases. Aura follows the prodrome and usually lasts less than an hour. The symptoms and effects of the aura vary widely. Some can be quite terrifying, especially when experienced for the first time. Some of the visual distortions can be exotic and bizarre. It's interesting to note that Migraine aura symptoms are thought to have influenced some famous pieces of art and literary works. One of the better know is Lewis Carroll's Alice in Wonderland. While most people probably think of aura as being strictly visual, auras can have a wide range of symptoms, including:

visual: flashing lights, wavy lines, spots, partial loss of sight, blurry vision
olfactory hallucinations - smelling odors that aren't there
tingling or numbness of the face or extremities on the side where the headache develops.
difficult finding words and/or speaking
confusion
vertigo
partial paralysis
auditory hallucinations
decrease in or loss of hearing
reduced sensation
hypersensitivity to feel and touch

Approximately 20% of Migraineurs experience aura. As with the prodrome, Migraine aura, when the Migraineur is aware of it, can serve as a warning, and sometimes allows the use of medications to abort the episode before the headache itself begins. As noted earlier, not all Migraine episodes include all phases. Although not the majority of episodes, there are some Migraine episodes in which Migraineurs experience aura but no headache. There are several terms used for this experience, including "silent Migraine," "sans-Migraine," and "Migraine equivalent." "

After the migraine event....
phonophobia - sensitivity to sound
photophobia - sensitivity to light
nausea and vomiting
diarrhea or constipation
nasal congestion and/or runny nose
depression, severe anxiety
hot flashes and chills
dizziness
confusion

sound familiar.....?

 

Oh yes...

another great source of tidbits of information about dealing with migraine episodes AND with drugs used to treat or prevent migraine....a forum by migraineurs. Did you know that some of the drugs prescribed can cause your teeth to become riddled with cavities? Neither did I...til I did some extensive reading here.

http://www.healingwell.com/community/default.aspx?f=31

 

Thanks Joanne

 

New article I found regarding BPPV and migrainous vertigo.

http://www.ingentaconnect.com/search/article?title=bppv+and+migrainous+vertigo&title_type=tka&year_from=1998&year_to=2008&database=1&pageSize=20&index=2

Open the PDF file to read.

 

Your authentication to this fulltext delivery has expired. Please go back and try again by logging back into the site and requesting the document.

© 2006 Ingenta Terms and Conditions | Privacy Policy

 

Changed the link, should work now.

 

do many people have MAV and menieres?

 

There are a few here on the board. Also consider that since the symptoms are similar many others could have MAV or MRV (Migraine Related Vestibulopathy) instead of the MM diagnosis they have been given.

 

The best information that I've come across about the migraine mechanism is the book, Heal Your Headache by David Buchholz, M.D. This book is not just about headaches--it discusses all the possible manifestations of the migraine mechanism, including the symptoms of Meniere's disease. It also has the clearest explanation of how triggers work and the most sensible approach to dealing with them that I've found. The author is a professor at Johns Hopkins.

 

Here's a comment from the book ariapace mentions, recommended for everyone with chronic dizziness and is suspicious they have migraines/MAV:

"Neurological symptoms of migraine, including visual disturbances, dizziness, and many more, form a broad spectrum...symptoms vary extensively in degree and duration. Minutes-long is typical, but they may last split seconds, hours, or even longer - or even be constant for months or years...As with all other neurological symptoms of migraine, vestibular symptoms can be transient or persistant and can occur with or without headache or other accompanying discomfort...The site of migraine-related blood vessel constriction causing dizziness can be either in the inner ear or in the vestibular pathways and centers of the brain."
(Heal Your Headache, David Buchholz, M.D.)

The book also explains how migraines can be affected by foods that constrict or inflame blood vessels, and environmental factors (chemicals, fragrances, cleaners, tobacco smoke, etc), among other things like visual overstimuli. At times when, overall, our bodies are doing fairly well and we aren't maxxed out by the offenders, we tolerate them better, so we may not even be aware we are having reactions in our heads, or we blame our symptoms on other ailments (I must be coming down with something, I'm having sinus problems, It's that time of the month, etc).

But at times when our health is already compromised, by, let's say, stress, other illnesses, allergies, hormones, medications, sleep deprivation, barometric pressure, etc. along with regular items in our diet that are a problem which we aren't aware of yet, and then we breath something in or eat something that feeds the migraine mechanism or add another migraine causing factor to the mix, we push our tolerance over the threshold, and then the symptoms become obvious.

To me that explains why dizziness and the other symptoms can fluctuate so much, and why they can be so persistant. No medication or surgery or injections or other external treatments of symptoms can have sure success if the problem isn't addressed from where it all starts.

 

Great post Burd!

 

Ditto! Great post. I went out and bought the book this weekend, thanks for the recommendation.

Katie

 

Another great book about migraine written by a migraineur is "Living Well With Migraine Disease and Headache" by Teri Robert.
The book talks about all kinds of migraine including those associated with MAV. The elimination diet is discussed along with other proactive things you can do to improve your relationship with your treating physicians.

 

Have any of you undergone electronystamography (ENG) and audiometry? These two tests should differentiate between MAV and Meniere's. Unfortunately, there is no law saying you can't have both.

I have had MAV for 18 years, a most miserable condition. I was misdiagnosed and mistreated for the longest time, even had two brain surgeries in a foolish attempt to rid myself of the constant debilitating dizzinesss. But nothing compares to the vertigo attacks where the world spins round and round just as giddy as can be as you vomit, then dry heave, and lose control of your bowels (for some reason that always happens to me with my bad attacks) while struggling to remain on the toilet to finish your business (ever try vomiting AND defecating, simultaneously? Not easy). The natural response is to valiantly struggle against the vertigo by trying to fixate on an object to steady your vision, but I think it only succeeds in prolonging the misery.

Then the obligatory minimum 12-hour sleep. I say obligatory because my body simply does not allow otherwise. Followed by the minimum one week of unsteadiness that threatens to mature into full blown vertigo if you so much as blink the wrong way.

Recently my vertigo attacks have become so frequent that I wonder if I've also developed Meniere's on top of MAV. At the beginning of my MAV, things weren't so bad and I used to be able to go years without vertigo attacks, but I could reasonably expect one bad attack a year or every other year. Guess I should repeat the ENG and audiometry. I don't know how I will live if this is the case. MAV has literally taken weeks/months of my life numerous times, even on a strict diet and meds; I have a handful of other health problems and can't imagine some other condition superimposed on top of that.

Does this sound familiar to anyone else?

 

Hi reverie,
Your story sounds like how mine started.  I thought it was menieres and so did my doc as I didn't even know what MAV was. I was so sick and even went deaf in my bad ear. By eliminating the things that were triggering it though brought tremendous relief, even got most of my hearing back and it's still good a few years later.  I had to figure this out on my own, no doctor could ever do that for me. I focused on environmental offenders (dustmites, fragrances of all kinds, chemical offgassing, new materials offgassing like plastics, etc., animal dander, pollens, electronics offgassing, etc.) and found great relief, but still had problems that increased over a couple of years as my system sensitized itself to some common food offenders I injested regularly, although I already knew dairy was a big factor but not the whole picture, and once I made further adjustments then I really started seeing improvements.

I am fortunate to have not needed or gone under any surgeries or invasive treatments and have been able to stay away from prescriptions except for an occasional dose of promethazine to ward off vertigo.  I do experience dizziness, head sensations and some kinds of pain, sinus pressure, stuff like that, but I can almost always pin it down on some kind of offender that I breathed in or ate.

Have you gotten this book...Heal Your Headache, by David Buchholz?  This neurologist knows migraine activity, with or without pain, and I found this book to be my MAV bible.  Inexpensive too.  If you get it, be sure to start with page 1 otherwise you might miss something vital.

Nice to meet you!
Terry

 

Thanks for replying. Do you have "just" MAV or MAV and MM? If "just" MAV, how do you know it is MAV and not MM's? The hearing loss in one ear is very suggestive of MM's, although in MM's, a reversal of hearing loss is not expected. I will say that even when I was sure I did not have MM's, during vertigo attacks, my hearing was badly affected. My brother would be shouting at me from two feet away and all I'd hear was his voice coming at me from a far away tunnel, very distorted. I need another audiometry and post-surgery scans, but I'm really afraid of what they might show.

Do you have hsv (herpes simplex)? I have hsv2 "genitally" (my entire below-waist affected), not orally, to my knowledge but then most people who have hsv of any sort have no idea they have it so it's totally possible I have it orally. I see from this board that LOTS of people who have MM's actually have hsv gone haywire.

I'm familiar with Buchholz and I've been under his care for the last 3 years, ever since my failed surgeries. I'm now having problems with the surgeries and noone, including my surgeon, will reoperate or attempt a reversal. I am so stuck and feel I've been hung out to dry. I do find that Buchholz knows more about migraine than any other doctor I've seen (I've been worked up at all the best institutions, including MGH and Mayo, where noone believed me) but not everything, and I don't fit a lot of his ironclad theories. For example, exercise is now a big trigger for me, whereas it wasn't before, which really sucks because I have been an active person all my life despite MAV. I don't find that following his diet helps very much. Following it has rather become a way of life for me but it is VERY restrictive and EXPENSIVE. I read labels like there's no tomorrow and only shop at the organic foods store.

In between the terrible attacks resembling Meniere's, I suffer constant debilitating disequilibrium--rocking, swaying, the sensation of riding an elevator when I'm not. I avoid transportation of all sorts, which makes it difficult to get to work (30 minute drive, 9th floor). The mere thought of riding a train is torture. I am ABSURDLY motion-sensitive. Even a jumping jack can set things off. Or a 5 minute car ride.

Do you have the constant disequilibrium, rocking, with bouts of vertigo interspersed? The vertigo is SO COMPLETELY EXHAUSTING. Had my second attack in two months yesterday and slept the day away, felt well enough to eat something at 9p, back to bed at 10p and it's now 11:30a and I've barely risen (and only because my alarm was set, I could easily have gone on until 5p). These attacks so closely resembles MM's as I also have the odd sounds in the affected ear and a feeling of pressure or fullness. I've documented the few vertigo attacks I've had over the years and they are getting much worse and much closer together.

I typically rotate clockwise. Does that indicate a bad left ear or bad right ear? What is your typical pattern? How have you been able to eliminate the vertigo? I used to think I couldn't deal with the incessant, maddening rocking, but now it's the paralytic fear of vertigo dictating my life. One is completely at the mercy of true vertigo, as you well know, it is IMPOSSIBLE to do anything, even blinking worsens it and any attempt at fighting it, which is one's instinctive response, is not only futile but counterproductive. Sometimes even when the rocking is bad, I can still do a few things, albeit 10 times slower than normal. Not so with vertigo.

I looked up promethazine and it is Phenergen, an antinausea drug. I haven't tried that before. Does it work for nausea AND vertigo? Or just nausea? I'm going to ask for it. Thank you. It is one of the VERY FEW meds I have not tried. I HAVE tried all of Buchholz's preventive meds except for Topamax (Dopamax) which I tried only a few times before I realized I'd turned braindead on it. I HATE taking meds. I don't believe in pharmaceuticals. But herbals just don't work for me. My neurotologist warned me against Topamax as I'm extremely sensitive to pharmaceuticals and the nature of my job doesn't allow me 15 minutes to answer a simple question. The only med that works for me is Sibelium, a calcium channel blocker and dopamine antagonist that is not FDA-approved. I purchase it overseas. However, yesterday's experience told me it is shockingly less effective compared to before. I don't know what I'll do.

I took Klonopin (clonazepam) for 8 years straight and it does NOTHING for me any longer. Years ago it did used to curb the vertigo. Now you could shoot me up with 10 grams of that and still nothing so I try not to take it.

Does this still sound familiar? I don't understand why the typical trigger eliminations don't work at all for me. I follow Buchholz's diet because I'm afraid not to, not because it really helps me! I have cheated before and been fine, yesterday I didn't cheat at all and BAM! Vertigo without warning. Feeling ok one second, spinning off my chair and vomiting the next.

Have you tried feverfew, butterbur, any herbal remedies? I'm so sensitive to alcohol, I can't take those supplements and the alcohol delivery is what gets it into your system the best!

I keep forgetting questions and having to edit. I am female and my first symptoms began at menarche. Classic. I am now 28 and much worse than I was 2 decades ago. I used to be able to tie my symptoms into my cycle but no longer as the vertigo comes without warning. My cycle is very regular, no hormone problems. I sometimes have a harder time around periods. What about you? (I'm assuming you are the gal in your avatar, apologies if you are not!!)

It is so nice to hear from another MAV-er. Thanks! Sorry for the novel. I'm having such a hard time with this after 18 years you'd think I'd be better, not worse.

 

Hi Reverie,
I know I have just MAV. It's been my own observation. And with knowledge of MAV and knowing myself really well, I am dead sure of it. When I thought it was meniere's I had unanswered questions, like why so much dizziness? I had experienced vertigo attacks just like you described, as have most people on this forum. With each lesson learned in my education about MAV, it answered yet another question. I think I drove my husband crazy when I got the book I recommended, as page after page I kept saying, "OMG this is me. This is me." (but it's not wrapped up in food issues only, it encompasses much more than that, I explain later here)

I also had decades of history of symptoms that all came together in one big puzzle as MAV. Long before I had vertigo attacks and chronic dizziness. In my 20's I was on a fast track to a vertigo attack as my body no longer was going to tolerate dairy foods. Within weeks I developed the classic symptoms of meniere's except the vertigo, but was heading there as I could see in retrospect. My doctor said to cut out all dairy components and within a month my symptoms went away, only to resurface anytime I'd push the limits. As I got older my body no longer tolerated the things that affect me now, it was a progressive thing. And when symptoms did resurface after all that time of feeling fairly well, it was the same pattern as in my 20's so I knew my body was responding to something it couldn't handle any more.

Even during the time when I thought it was meniere's and I figured out alot of my triggers, I thought it was triggering meniere's. It wasn't, because I had chronic dizziness. You mentioned alcohol. I have always been a lightweight, I thought that's what it was and then I learned that hangovers are really a big migraine attack. I realized that I wasn't a lightweight, but that alcohol was one of my triggers for migraine activity, and as soon as it got in my system in even small amounts it would start affecting my blood vessels and start bringing on MAV without even getting close to a hangover. Another piece of the puzzle fell into place.

I had heard of MAV for the few years I had been on here, but I didn't understand what "migraine" really meant, and like most of society including many many doctors I was under the impression that it meant a kick-ass headache. I didn't get those. Although in my teens and early 20's I had headaches every day, but I could still function, I didn't get auras or have light sensitivity. I didn't understand that migraine was the disease and not the headache. Those headaches disappeared with my other symptoms when I stopped consuming dairy products. (I became very good at reading labels and knowing I had to look for all the components and not just whole dairy products).

You mentioned that foods don't seem to be an issue which makes you question MAV. Maybe it isn't food but something you are breathing in everyday. It is those things that hit me harder and faster than any foods will. The list is extensive for me. (dust, dustmites, smoke from any source, fragrances of any kind in any products, chemical odors and offgassing, new materials offgassing, animal dander, mold, new electronics, new plastics and building materials, etc. etc. etc.) Focusing on foods entirely and I wonder if for you it isn't food at all. And when it comes to foods, for me the worst offenders are the additives...sulphur, sulfites, nitrates, nitrites, msg and it's long list of relatives, hydrolyzed proteins, etc.

Some here are affected by foods that aren't connected to migraine issues, like gluten or excessive sugars. Be sure to search those links out too, there might be something there that could help you. (look for "rick")

"In between the terrible attacks resembling Meniere's, I suffer constant debilitating disequilibrium--rocking, swaying, the sensation of riding an elevator when I'm not. I avoid transportation of all sorts, which makes it difficult to get to work (30 minute drive, 9th floor). The mere thought of riding a train is torture. I am ABSURDLY motion-sensitive. Even a jumping jack can set things off. Or a 5 minute car ride."

This was me with my MAV. And one thing I learned about with MAV is that head motions can trip it. I use to be super sensitive but it has eased significantly with the changes I've made in my life and my environment.

"I typically rotate clockwise. Does that indicate a bad left ear or bad right ear? What is your typical pattern? How have you been able to eliminate the vertigo?"..."I looked up promethazine and it is Phenergen, an antinausea drug. I haven't tried that before. Does it work for nausea AND vertigo? Or just nausea?"

Mine was not consistent. It was a wild ride all over, more like random pitching and turning. The last time there was no spinning, but a pitching forward, down, and up, forward, down, and up, like being in a small boat on the pitching sea. I've had only 1 attack in almost 3 years. Many close calls. You asked about promethazine. (only the syrup, as the tablets are based in dairy products like most meds and the syrup is meant for children so there's no alcohol). It stops an attack for me if I get it in my system before the attack hits. I know my body well. Once in the beginning I had an attack hit, before I knew all the signs as well as I do now, and by the time I got the promethazine in, I was in one. It kept me from vomiting, and the motion was not as severe, but it was difficult to move for about 24 hours and I did have to let it run it's course. Since then I get the stuff in me as soon as I feel the danger. But with management of my triggers I take it only once or twice a month. But it goes with me everywhere.


"I HATE taking meds. I don't believe in pharmaceuticals. But herbals just don't work for me."

Me too. I haven't tried it but vertigoheel works well for a number of people here on the forum. Have you tried it?

"I don't understand why the typical trigger eliminations don't work at all for me. I follow Buchholz's diet..."

Which brings me back around again to the idea that it may not be foods that are your triggers but something in your daily environment that you are breathing in.

"Do you have hsv (herpes simplex)? I have hsv2 "genitally" (my entire below-waist affected), not orally, to my knowledge but then most people who have hsv of any sort have no idea they have it so it's totally possible I have it orally. I see from this board that LOTS of people who have MM's actually have hsv gone haywire."

If I do I don't know it. But that topic comes around often here on the forum so type herpes into the search as you will find alot of information on that too. Some have found relief with antivirals. Look for "caribbean".

"I sometimes have a harder time around periods. What about you?"

Yes, hormone fluctuations make me more sensitive. Before, during, and even a bit after. It's not a consistent problem but it is definitely a factor.

Also check out this link for other conditions that could cause meniere's type symptoms...
http://www.menieres.org/jacki/jackis70.htm
It's like a nutshell version of other possibilities you can research.

I understand your frustration. I know the feeling of overwhelm.
I've been here for nearly 4 years and most everything has been discussed, so be sure to also use the "livingroom" to ask specific questions, someone is bound to be out there that will have experiences for things I can't help you with. But you can ask me anything, here or in pm's. I hope there is something about my experience that can help you with yours.
Terry