Could I have MAV?

Hi guys,

I’m new to the forum and have had a heck of a bad year. I was diagnosed nearly a year ago with uncompensated Labs/VN and have been working on a VRT program for quite a while now. I am still really dizzy and sick most of the time though. I am wondering however as I am still really bad and the vrt often makes me worse, if I was misdiagnosed and that I could perhaps have MAV.

Any opinions that you have would be gratefully appreciated.

Basically my symptoms are:

  1. A constant feeling of dizziness, disequilibruium, that once every week or two goes from just annoying to really bad
  2. Nausea, usually when the dizziness gets bad
  3. occasional headaches, that last several days (ibuprofin and paracetamol do nothing) - however this has only happened about four or five times in the ten months since I started feeling dizzy, but I never really sufered from headaches before

Note that this came on gradually over a few weeks and got worse for about two and a half months before peaking. It then slowly got better (to a point) and has been rougthly where it is now for a few months.

Note that my diagnosis of Labs/VN was based on symptoms only. None of the tests showed any disfunction in my ears. No inflamation, there is no Nystagmus, no problems with my hearing and no ear pain.

Does this fit at all with MAV?

Thanks for your help.

Mark

I’ll be brief:

  1. Welcome! :slight_smile:
  2. It sounds exactly like MAV to me. Labs/VN is always (dare I say it? I think so), ALWAYS a CRASH. A gentle intro and clear tests should have ruled that out to start with in my (non-professional) opinion. I don’t see anything that points away from MAV in your description, either, on the contrary, it sounds like a pretty clear case.

Do people in your family have migraines? It could be MAV, but I believe there probably are a lot of things are yet to have a name of themselves, and it could be something else as well. By putting the label MAV on every unidentified case of dizziness, the docs may slow down the progress.

Not saying it cant be MAV, but you would really have to find a typical migraine-med which works for you in order to be sure.

Hello Mark,

It is impossible to give anyone an absolutely definitive MAV diagnosis as there are no tests which will absolutely tell a person they have it.

There is a specialist who has given some answers to questions posted on these boards. Interestingly one of the things he did highlight was that when VRT makes people worse, he generally takes that as diagnostic of MAV. Have a read of the answers from Dr Rauch and it is in there somewhere, I think.

My illness started off as VN, this triggered a mostly dormant migraine condition and I have now have MAV. My VN did creep up slowly and I was informed by a neurotologist that this is not unusual. However, the fact that you have been struggling with VRT for a long time and haven’t seen significant improvements would make me think that MAV is very possible. I am not a big believer in uncompensated VN. I think there are some tougher to treat VN cases, but I also think that for a long time people with MAV may have been misdiagnosed with uncompensated VN. They are just catching on to how prevalent it is and learning more about it. Even just a few years ago specialists weren’t as informed about it.

The headaches could also be significant. People often think oh my labs/VN is giving me a headache, when in fact, it is the reverse and migraine activity (including headaches) is causing the dizziness.

Have you seen a neurotologist for your diagnosis?

H

Hi guys,

Thanks first of all for the quick responses. It really is much appreciated. I’ve been banging my head against a brick wall for some time now without making progress and your comments are making me feel that I might be about to.

First of all, I should say that I’m only now starting to learn about MAV as I have been firmly led to believe from day one that this was uncompensated Labs/VN. So I now know a lot about that condition and very little about MAV. The slow onset of my condition always concerned me though. It just didn’t fit with everything I’ve read about Labs/VN.

The thing that I would like to clarify is can MAV come on like it did with me. Nothing and then over a couple of months slowly develop. Can it then stay with you almost 24/7 (as it does for me)? It varies in intensity, but I’ve had it pretty much all of the time for ten months now. Also, I have had these headaches that lasted a few days at a time, but only a few since I got this. Can MAV present with just diziness, nausea and disequilibrium or should I also have things like sensitivity to light, aura’s and other symptoms?

Thanks again for all of your advice.

Mark
P.s - regarding family history. I’m not aware of any ongoing Migraines in my family. Although my dad used to get what he described as cripling headaches that lasted a day at a time regularly until he was in his early twenties, before they suddenly stopped. Also (not sure if this is relevant at all), but my mum had Gran Mal epilepsy all her life with frequesnt seisures. I’ve never had epilipsy though.

Mark,

I am not a physician, but after researching MAV for 2 years (since I became ill), I feel like I have a good knowledge about this dx. You definitely seem to have MAV to me. Not everyone shares the same exact symptoms. For example, some may have auras, while others might not. My worst symptom is disequilibrium which I have had for 2 years straight. There is a slight fluctuation in intensity but I always have it. usually when people have chronic dizziness and other diagnoses are ruled out, it is migraine. you should read “heal your headache,” by Dr. Buchholtz. I think you will find it quite informative. btw - your family history of father with headaches provides further evidence for this dx.

Hi again,

Well, I’m starting to think that maybe it is MAV. Time now to mention it to my Dr. I’'ve so far seen my gp several times and my ENT twice. Nobody so far has mentioned MAV, just Labs/VN. I just stumbled across this condition myself whilst looking through the internet.

So what is the prognosis with MAV? Do I need to try some Migraine medication or just do something with my diet first? Since getting this I haven’t been able to drink alcohol. So thats already out of my diet. If I have even one drink, the dizziness is far worse the next day.

How effective are the meds for MAV by the way? The ones for Labs/VN are quite innefective. Not just for me, but from what I’ve heard for most people. Are the MAV meds any better. As I say, my main symptom is dizziness and disequilibrium (treated innefectively so far with meclazine and dramamine). Are the meds different for MAV?

Sorry for all of these questions by the way. I’ll settle down once I learn the ins and outs of this condition.

Take care

Mark

Hi Mark,

Welcome to mvertigo! As the others have noted, you could easily fit a MAV dx. Specifically, the worsening of symptoms with VRT is virtually diagnostic of MAV according to Steve Rauch (Massachusetts Eye & Ear, Harvard Med School), and you do seem to have a family history going on although it’s not clear cut. But as Hannah said an effective migraine med is what ends up really pinning down the dx.

While this condition has fundamental similarities in everyone – migraine-based, various sorts of dizziness, and neurological disturbance, the specific symptom set seems to differ and/or overlap in everyone. Furthermore, one migraine med can work wonders for one person but be a disaster or completely ineffective for another. This part alone can be very frustrating.

So what is the prognosis with MAV? Do I need to try some Migraine medication or just do something with my diet first?

The rule of thumb is to first adjust your lifestyle to see if that makes a big enough impact to stop the symptoms – this includes dietary adjustments and other changes in habits such as keeping sleep regular, avoiding sudden bouts of harsh exercise, keeping stress under control etc. If this does not do the job, then you will have to venture into lookig at a migraine med of some sort. There are many and in most cases (about 80%), one med should do the trick, however, for some people, they may need more than one med. Have a read of the Rauch thread. He describes the process very well.

Can it then stay with you almost 24/7

Unfortunately, yes it can unless treated.

Hang in there and ask all the questions you like.

Best … Scott 8)

Thanks Scott,

This is a very informative site. I like that you’re not afraid to go into detail either. The articles are quite technical, something that being from a scientific background I like.

You said that in 80% of cases a single med fixes this condition. Is that just the case for people who get the sudden bout of typical migraine. A sudden headache kind of situation? Or for people like me who have basically a constant dizziness Are their meds that work for this sort of Migraine and if so, does this 80% success rate still apply?

Also, I read an article on your site that seemed to point to migraine sufferers being more prone to Motion sickness (something that I’ve always had) and having low seretonin levels. So does this mean that if you increase your seretonin levels by say meditation, that this might help the condition?

Thanks

Mark

Hi,

The same preventative (daily) medications are used to treat MAV as regular migraines, although some of those medications are thought to be more effective for MAV. Specialists in the field differ on which they think are the most effective, they tend to have favourites. MAV, however, does not respond to the abortive medications - the type that are taken just as a migraine attack starts and stops it in its tracks. I don’t think anyone is sure why.

I think no one has the answers re what role exactly serotonin plays in migraine, they only surmise that it plays some role. I’m not from a science background so it may be that Scott or someone else will have a better answer than me on this one. Although one class of drugs that can be effective in preventing migraine is anti- depressants.

By the way I meant to ask - you talk about seeing a GP, I’m not sure if that’s an American term or not. I am in the UK, was wondering if you are also. If so I can advise you where best to see someone who knows about this stuff. ENTs are notoriously bad at dealing with dizzy disorders (they generally do no further training in to the inner ear beyond the basics.) There is another speciality that does a lot of further training on top of ENT training called neuro otologist or neurotologists. They are the people to see, along with neurologists, although it pays to see one who is clued up on this particular condition. People are often frustrated in their quest for the right diagnosis until they see the right specialist. GP’s often know very little about this condition.

H

Hi Mark,

The articles are quite technical, something that being from a scientific background I like.

Really glad you’re finding the site informative and, although technical at times, still feel your getting yourself up to speed on this junk. It’s a complex problem, that’s certain. Keeping this forum grounded in science-based medicine is one of our main goals. I don’t care where the treatment comes from – whether it be labelled allopathic or “alternative” – as long as the science and evidence is there to support it, we’ll check it out and consider it. There’s a ton of quackery and cranks out there, so be mindful of that.

Are their meds that work for this sort of migraine and if so, does this 80% success rate still apply?

I think Hannah covered the meds bit really well above. The 80% success rate with monotherapy is information from Professor Hain himself. He’s one of the top gurus in the States. So yes, it applies.

So does this mean that if you increase your seretonin levels by say meditation, that this might help the condition?

I think meditation can definitely help in keeping you sane through this “trip” by keeping anxiety under control but doubt it will alter your serotonin state such that it will bring on a remission. The sort of serotonin jolt you may need is the sort delivered from SSRI meds or tricyclic anti-depressants. Still, other non-serotonergic meds also wipe this out indicating that it’s not always serotonin where the problem lies.

Cheers … Scott 8)

Ok - Sounds like I need to get another appointment with the Dr and see if he will either refer me to someone who knows about MAV (not my ENT) or at least try me on some sort of anti-migraine med. I think I need to keep off the SSRI’s or maybe even the trycyclics though as I briefly was prescribed an SSRI for my dizziness (to help anxiety they said) and felt far more dizzy than without it. I gave up on it pretty quickly though.

For most of the last 10 months I’ve been on no meds at all apart from the occasional anti-nausea pill (usually Meclazine) when I get really bad. It doesn’t help much though. I’ve just been doing my best to cope with the dizziness as (thinking this was uncompensated Labs/VN) I thought that enduring the dizziness would help me to compensate. That and the vrt.

What meds tend to have the mildest side effects. More specifically, which meds are less likely to cause even worse dizziness and nausea?

Mark

— Begin quote from “MarkSD”

What meds tend to have the mildest side effects. More specifically, which meds are less likely to cause even worse dizziness and nausea?

Mark

— End quote

Probably Verapamil. Hain even says he favors it for patients with nausea. The “only” common side effect is constipation, which is VERY common (50-90%). Most people find it very tolerable, and it can be extremely helpful in some cases. :slight_smile:

Mark
The “only” common side effect is constipation, which is VERY common (50-90%). Most people find it very tolerable, and it can be extremely helpful in some cases. :slight_smile:

I eat a lot of spicey food so the constipation shouldn’t be a problem :slight_smile:

Thanks for the tip. It’s good to be prepared when you visit the Dr.

Mark

— Begin quote from “Tranquillity”

— Begin quote from “MarkSD”

What meds tend to have the mildest side effects. More specifically, which meds are less likely to cause even worse dizziness and nausea?

Mark

— End quote

Probably Verapamil. Hain even says he favors it for patients with nausea. The “only” common side effect is constipation, which is VERY common (50-90%). Most people find it very tolerable, and it can be extremely helpful in some cases. :slight_smile:

— End quote

I agree with Tran. Verapamil is your best choice to start with. It helped get my vertigo under control. When the vertigo lessened, the nausea went away for me. Verapamil has one of the lowest side effect potentials of the migraine prophylactic meds. I used meclizine as my “rescue” from the nausea med in the beginning too. I rarely need it now.

Good luck!

Marci

Hi Marci,

Well that sounds like a good posibility as a first med for me. Willing to give it a try. Is it a drug specifically for lessening vertigo or does it act primarily on the headache side of migraines with lessening of vertigo as a side effect? As I say, my main symptom is the dizziness and it’s accompanying nausea.

Thanks again :slight_smile:

Mark

Hi Mark,

Verapamil is a calcium channel blocker used primarily to treat hypertension, angina, and certain heart rhythm disorders. It has been found to be useful as a migraine preventative. Those on the forum who have tried it have had varying experiences with it. For me, it helped with vertigo and the resulting nausea but made my low-grade headaches more prevalent. Others have had the opposite reaction; it helped with headaches but did nothing for vertigo. For some, it helped with all the symptoms and yet for others it did nothing. That’s pretty much the way it goes with migraine meds. Trial and error. You’ll have to give it a try to know how your body will react for sure.

Take care,

Marci :slight_smile:

Thanks Marci,

I have a phone appointment with my GP later today and I’m going to try to get a referal to a neuro otologist and perhaps even in the meantime put on some anti-migraine med. If you’re in the UK, have you heard of Dr S Surenthiran in Medway Maritime hospital, Kent? I’ve been trawling the net and he seems to be quite a recomended neuro otologist. I’m based in Cambridge so thats not too far for me.

Mark

— Begin quote from “MarkSD”

Thanks Marci,

I have a phone appointment with my GP later today and I’m going to try to get a referal to a neuro otologist and perhaps even in the meantime put on some anti-migraine med. If you’re in the UK, have you heard of Dr S Surenthiran in Medway Maritime hospital, Kent? I’ve been trawling the net and he seems to be quite a recomended neuro otologist. I’m based in Cambridge so thats not too far for me.

Mark

— End quote

I’m not Marci :wink:

Mark,

I am from the UK and have heard nothing but good about Dr Surenthiran, he is probably one of the best in the country. I know a couple of people who have been to see him and thought he was great.

Don’t know if you’ve already seen it but here is an article that talks about him: news.bbc.co.uk/go/em/fr/-/1/hi/h … 231280.stm

Becky