Hi All

I was wondering how you know if you have MAV.I have had labs/VN for nearly 9 months with periods of feeling better and others worse.I do seem to have had quite a few headaches with it, but have never had a history of migraine.If my problem has not gone after a year, should I consider this?

I have more headaches than I used to, but am unsure whether this is just part of VN/labs or not.

I dont want to sit around waiting for years if I could have been cured by a migraine preventitive!!!

Hi Dizzyrascal

I'm curious as to what you mean when you say that you get headaches but "not migraines"? What is it that you feel differentiates the headaches from migraine headaches? There is a criteria for diagnosis of migraine headaches which can be useful, but it tends to be a bit weak when it comes to unusual forms of migraine. This is changing in response to criticism though.

One thing that I personally believe gives the biggest clue to differentiating between VN and migraine is fluctuating symptoms. If you feel horrible one day, better the next, then horrible the next day.. and so on... then I personally believe that there is an active process at play. There are some clever and well-founded theories as to why this occurs in migraine. In a stable situation like VN, I would expect continuous progression towards feeling better with minor events of decompensation but not huge fluctuation - such as I mentioned above - good one day, then terrible the next. Everyones opinion will differ on this. Light sensitivity, sound sensitivity, headaches that fit the IHS criteria for migraine, and visual processing abnormalities are dead giveaways but won't necessarily be present.

If I felt there was an active process occuring, making me feel terrible out of nowhere and then better the next day or the next week I would always seriously consider trying something like Verapamil or a tricyclic or SSRI to see if it improves.

Adam

dizzy rascal

did you have an eng? if you did and it showed a weakness in one ear compared to the next...thats where your dizziness is coming from.

That's a bit simplistic. A positive ENG does not mean someone does not have a central disorder like migraine, and a negative ENG does not mean someone has no inner ear disorder.

what i meant was if the eng showed a weakness in the ear than that would mean thats where the dizziess is coming from wouldn't it?

Dizziness doesn't come from a particular ear. It is usually caused by an imbalance between the input from both ears. The inner ear is just a sensor though, its function is relatively simple compared to the integration of the input in the brain. It is not possible to distinguish whether a caloric weakness on ENG is due to a peripheral (inner ear) disease like VN or whether it is in the brain (central disease) where the signals are integrated. I have some good diagrams of the structures in the brain that integrate vestibular input - vestibular nucleus, abducens nucleus and then to the eyes via the oculomotor nucleus. Many of these structures reside in the cerebellum which is an area of the brain that displays abnormal activity in migraineurs.

The end game is that the ENG doesn't tell us much - it will at best give an objective answer to the question of 'is there something wrong with the vestibular system in this person?'. Unfortunately though, even if the ENG shows nothing, it has become clear that the person may still have a vestibular disease.

I agree with Adam.......From speaking to several of my doctors the testing we have out there today it is very difficult to pin point location. It is more of an education guess. The testing we have out there today such as ENG's basically tell you the functioning of the inner ear or signals is getting crossed. They use different approaches to try and manage the symptoms such as VRT and medication. The is no testing such as an MRI or Cat Scan to say this is the problem with your inner ear. With that being said MAV is still defintely a possibility. I had an abnormal ENG and the first trial for management was VRT. I was later diagnosed with MAV and put on Meds and I am know 100% for 4 months. The key is investigation and trial and error. There is no black and white answers with this junk and a lot of grey

I agree with Adam as well,

I am diagnosed with mav, but have horrible ear symptoms, I can hear my breathing and heartbeat in them, they are sore deep down in, my hearing fluctuates off and on and yet my eng said nothing was wrong, so why the ear symptoms? I was told my condition is centrally located but believe it gives peripheral symptoms as well. As far as the visual thing, that is one of my worst symptoms with this, I constantly have a shimmering effect, flickering at times, flashes, blurry etc. and yet my eyes check out fine too, sooooo........ I would say it is all centrally located. The theory of having both ailments ie inner ear and central coinciding is one I am looking into more now because at the onset of all of this 2 years ago for me I just had a constant imbalance feeling with the occasional visual thing, but now its turned around an I have the constant visual thing, ear thing with the off balance occasionally. Each day proves to be different for me but all days are with symptoms of some sort.

Good luck,
Kim

an eng test can't show wheter its central or peripheral but they also do other tests to see if it is. usually with the eye movements. with inner ear the eyes go left and right with central problems the eyes move up and down. they can tell wheter its central or peripheral. its all process of elimination.

Direction of nystagmus can give clues as well, but many many diseases (not related to dizziness) cause nystagmus, and many individuals are even born with nystagmus. There is far too much overlap for nystagmus to be specific to any particular vestibular disease.

I have mav and the diagnosis was easy for me - simply because I have had rotary vertigo episodes with light sensitivity, and I suffer from migraine headaches. However I have pure left-beating nystagmus - this is not specific to central or peripheral disease. Migraine is often a combination of both - there is a number of articles out there with the theory as to why inner ear and central dysfunction can occur simultaneously in migraineurs or why they can occur independently. The most likely one is in regards to the dysfunction of ion channels that exist in both the brain and inner ear.

Hi Adam and all,
I have a few questions that I am curious about concerning MAV. We have corresponded before (re: Turmarkin's Otolithic Crises) where you gave me some very interesting information re: studies showing that "drop attacks" were of a higher incidence in people who have been diagnosed with MAV, etc. I too have rotary vertigo, light sensitivity and have shown left-beating nystagmus with Dix Hallpike. I remember you saying that you also experienced "drop attacks" in clusters, and they just appeared and disappeared one or two times a year. My first attack, which blew me away because of the sudden onset, was in early February, and I had 3 in a 10 day period. I have since had 4 more - same thing - no warning - feeling of being "pushed", etc. These have been more spaced out time-wise. I have never, to my knowledge, had a migraine headache; in fact, it's one of the only things I can say that has been consistent throughout this whole thing for the past two years - no headaches. I realize through some of the research I've done that this is not unusual. To get to my question(s) though, do you mind if I ask what you are using to treat your MAV, and how long it took before you noticed positive results (if indeed this is the case for you)? You seem to know of others who have the same dx, and do you know if any of them have been treated with the tricyclic Nortriptyline and how long it took for positive results for them? I have been started on a 10 mg dosage and am supposed to go up to 40 mg, but unfortunately, I am noticing some effects that are not on the positive spectrum. My otoneuro has told me that I may not notice anything positive for up to 8 months - but she did not say why so long - I guess that's my next question. I also experience 24/7 disequilibrium and have throughout - I still do VRT (both movement and eye exercises) just in case it may help - had been dx previously with BPPV only - MAV dx in Jan / 06 - I know the relationship and higher incidence of BPPV in people with MAV. I'm not sure why I keep looking for answers - probably more so recently because of the drop attacks - which even though they are not as disabling for as long as the vertigo attacks - they scare or at least bother me more because of the "no warning" - I fear them more I guess because they have more of an impact with regards to what I feel is safe to do (ie. driving). I suppose there just comes a time when we accept this as part of the picture and get on with it, which I am doing for the most part, but I guess "hope" or "curiosity" or whatever pushes to the forefront every now and then, so I go on a little tirade of W5 again. :rolleyes:

Sorry, didn't mean to hi-jack this thread - just some questions that I thought experience might be able to answer... best to all...

~Sheri

Hi Sheri

Looking for answers is a good thing - if you have been diagnosed with MAV as it seems, then you have a lot of avenues to pursue in terms of eliminating any remaining symptoms.

Have you tried the dietary/lifestyle modification thing? I find some small things make a substantial difference for me. I always try to repeat them to be reasonably sure that the changes I am making are making the difference I feel. I stopped drinking caffeine containing drinks completely, no coffee/tea or coke AT ALL and that has made a big difference - feel far less jittery and I feel it has improved the 'rocking sensation' a lot as well. I also do not drink alcohol.

Which medications have you tried? I am a bit surprised that some MAVers don't pursue this angle as much as those with regular migraine headache. On a migraine forum many of the participants have tried upwards of 50 preventatives. There are of course extreme examples but I have tried somewhere around the 15 mark myself, with varying levels of success.

If Nortriptyline doesn't work, don't despair - just try something else.. Verapamil and Propranolol might be worth a shot. I tend to think Verapamil is more effective. I certainly wouldn't be spending 8 months on Notriptyline if it has no effect after a few weeks at a reasonable dose. To be honest, all the drugs that have worked for me have made an enormous difference within days.

Adam

Hi Adam,
Thank you for your response. I have been keeping a food diary since January and the only thing that I have noticed which appears to make the daily disequilibrium worse are foods containing msg. I also do not drink coffee or alcohol - and only herbal teas. I do occasionally drink soft drinks containing caffeine, so I'll watch that one more closely. When you talk about the 'rocking sensation' you feel, does it feel like you are walking on a boat without your 'sea legs'? I have described my 'disequilibrium' like that and I also feel that I need 'touch reference' to be aware of where my body is in the moving environment around me. Do you feel that way at all?

With regards to meds, Nortriptyline is the first one that I have tried specifically for MAV, but I am also taking Clonazepam (Klonopin) for the anxiety that has crept up on me during dealing with this for the past two years, as well as Ativan right now to help with some sleep issues. I have had some major sleep deprivation since an episode of prolonged vertigo around Christmas, and have been waking often at night with vertigo. My otoneuro has suggested that I consider having a sleep study done to rule out any sleep disorders that may be accompanying this - I do know that the lack of sleep has not helped matters any. I'm not sure if it's triggered by movement, but I'm continuing with VRT just in case - I figure it can't hurt.

Getting back to the Nortriptyline, I have been taking it since early February, so maybe it's time to try something else because I have certainly not experienced any enormous difference like you spoke about in your post, other than a few not-so-positive side effects such as urinary retention and a little blurred vision - definitely not what I'm looking for.

Thanks again for your advice - you and Howie seem to be the MAV experts here - and I appreciate the time you've both taken to answer my questions.
Best to you both...

~Sheri

there is a number of articles out there with the theory as to why inner ear and central dysfunction can occur simultaneously in migraineurs or why they can occur independently. The most likely one is in regards to the dysfunction of ion channels that exist in both the brain and inner ear.

Hi Adam. Could you point me in the direction of some of these articles, please? I've been diagnosed with MAV and peripheral vestibular dysfunction and am trying to disentangle them!