Getting less and less sure that this is MAV

I posted my story last week in the Post Your Story thread so some of you have read about me… :slight_smile:

The thing is that I am not so sure any more that this is MAV as opposed to Meniere’s, or more likely some other neurological condition. The main reason I doubt that it’s migraine is that I’ve had, very persistently for months, an annoying effect of certain low-frequency sounds that affects only my left ear. It’s a distortion of those sounds, to the point where what I seem to be hearing mainly when I’m exposed to those sounds is a kind of buzzing, or low-frequency electric sizzle, taking place somewhere inside my head. It is extremely distracting and bothersome though I’ve grown accustomed to low levels of it over the months. It started with the sudden low-frequency hearing loss that I posted about before, and gradually subsided over the time I’ve been on antivirals into this background hyperacusis/recruitment/whatever that has never gone away completely. The reason I doubt that has anything to do with migraine isn’t that I think migraine can’t cause auditory symptoms as I know that isn’t true, but rather that the symptom is unilateral, affecting only my left ear.

And that fact, in my mind, casts doubt on the whole theory that any of this has anything to do with migraine, except maybe as a secondary effect from the physical and emotional stress of having these symptoms, i.e. in that it causes me to go over my personal migraine threshold, which according to one theory everyone has.

This crap is just getting too much for me to bear – right now and for the last month or so it’s been a nearly constant low-level woozy feeling bordering on chronic motion sickness. Actually, maybe that’s the best description for it, a kind of chronic motion sickness brought on by true motion and sometimes by visual illusions of motion, even by trying to follow lines of moving cars in traffic and that sort of thing, or even by scrolling print on a computer screen. I have both the dizziness/slightly “off” and disoriented feeling that goes along with motion sickness, and the nausea which is a deep sick feeling in the pit of my stomach that lasts for hours and even days and is NOT relieved by sitting still.

My most recent MRI was 6 months ago, and like the one a year before that, showed nothing abnormal except for white matter changes that my neurotologist said were characteristic of migraine.

I’m out of ideas and won’t be able to see my specialist for another month. :frowning:

Fizzixgal,

I feel your pain, I am in the same situation as you, similar chronic symptoms. After two episodes of spinning vertigo 8 months ago, I’ve been suffering continually (day and night) from what was originally called bppv, then unilateral vestibular hypofuction of 25%, then MAV. Like you, I doubt it is migraine, since even though I have been a migraine sufferer for most of my adult life, I have only had one month of migraine headaches for the 8 months that I have had this condition, so I have been headache free for almost the whole time. I know, I know, I know, that there can be migraines without a headache. But this isn’t one of them. I’ve had this condition steadily for 8 months without a single break, that is unlike any migraine headache I have ever herad about. With a migraine, it helps to lie down somewhere quiet; with this, I am worse when lying down somewhere quiet.

Like you, I am slowly coming around to thinking that this isn’t migraine, it is some kind of ear infection/disorder. Like you, I have everyday unsteadiness like motion sickness, and my worst time is at night when I close my eyes, that is when I feel like I am in a turbulent plane. But I don’t feel that during the day, which again suggests that my eyes are compensating during the day, and that at night I am left alone with my ears, as it were, and that is where the problem lies.

My suspicion is that since they cannot see inside the ear, they cannot accurately diagnose you. Your MRI is normal (so was mine). So they call it MAV. I don’t doubt that MAV exists; I just doubt that I have it.

I think that it will get better over the very long haul. That’s the best we can hope for.

— Begin quote from “longshort”

Fizzixgal,
I’ve had this condition steadily for 8 months without a single break, that is unlike any migraine headache I have ever herad about. With a migraine, it helps to lie down somewhere quiet; with this, I am worse when lying down somewhere quiet.

— End quote

Many of us here have been migraining for years without a break (me 18 months) so while unusual it is possible. And also not all people are helped by lying down in the quiet when they have a bad migraine - for me when my symptoms are really bad (I don’t get headaches with mine) I have to move around. Lying down is the absolute worst thing I can do - and there are others here that are the same. For the fist 3+ months after this started for me I couldn’t sleep lying down

it’s a crazy beast this MAV thing

Hi Fizzixgal

Sorry to hear about your situation. Have you checked for Superior canal dehiscence. Just learned about it here on the board the other day. Seems to have some similar symptoms as MAV.

Hope you get some relief soon
John

— Begin quote from “lorcalon”

— Begin quote from “longshort”

Fizzixgal,
I’ve had this condition steadily for 8 months without a single break, that is unlike any migraine headache I have ever herad about. With a migraine, it helps to lie down somewhere quiet; with this, I am worse when lying down somewhere quiet.

— End quote

Many of us here have been migraining for years without a break (me 18 months) so while unusual it is possible. And also not all people are helped by lying down in the quiet when they have a bad migraine - for me when my symptoms are really bad (I don’t get headaches with mine) I have to move around. Lying down is the absolute worst thing I can do - and there are others here that are the same. For the fist 3+ months after this started for me I couldn’t sleep lying down

it’s a crazy beast this MAV thing

— End quote

Lorcalon, you could be right and I could be wrong, that is a distinct possibility, and in fact that is why I am on this board!

Whatever it is, it is a crazy beast, you are right about that.

SCD is an interesting question. Yes I’ve been checked for it, had a high-res CT scan of the inner ear on both sides. It actually showed borderline SCD on both sides, but my specialist after doing a “fistula test” (using a suction device to pressurise the eardrum and looking for nystagmus) declared that I don’t have it. This despite Dr. Hain’s cautionary pronouncement that the fistula test is not very sensitive for either fistula or SCD.

I don’t doubt that migraine can be chronic. The reason I don’t think this is migraine isn’t because it’s 24/7 but because of the unilateral auditory symptoms, and something else that I’ve noticed: my hearing distortion is inversely related to my dizzy symptoms, i.e. times when I am the most acutely motion sensitive are when sounds are least distorted. So they aren’t just independent symptoms due to different conditions, but they seem to be causally related even though in a way that is not intuitively obvious. Is there is some way that migraine can cause consistently unilateral auditory symptoms? That’s really the question I’m trying to ask. (And even if it can, there could be other central conditions that could also cause the same symptoms.)

Thanks y’all. At least I’m feeling like my thinking isn’t totally nuts on this, though there might be things I’m missing.

Migraine can affect only one ear. With classic migraine attacks, they affect one side of the head. It is only reasonable to expect that migraine can also create other symptoms on one side only. It is my experience with my ear. The right side. But I will have other migraine symptoms that can affect all over. Can it affect unilaterally consistently? Yes. But it is wise to check out all your options so you can know what you are dealing with.

I have hearing problems similar to what you describe. Because the hearing problems are in the low frequency range, the docs say Meniere’s. The thing about my hearing is that it always returns to normal. Sometimes it takes a few months, but it does return, unlike meniere’s. Regarding migraines and hearing, look at it this way, if migraines can cause all sorts of visual problems, why can’t they also cause hearing issues? The fact that it is on one side only can also be explained by migraine, after all a classical migraine is on one side of the head, not the whole head.

Thanks Burd and Brian. Very interesting. Well yes, I knew that migraine could cause symptoms in one ear at a time, but wasn’t aware that it could produce a situation where there is one very clearly “bad ear”. Just like with migraine headaches… from everything I’ve read, it is uncommon for them to consistently affect the same side of the head, and many people find they are rarely on the same side twice in a row.

Everything I had read about migraine and hearing suggested that any auditory symptoms caused by migraine should be bilateral, or at least should affect different ears at different times. Meniere’s doesn’t really fit either though, as I have no persistent hearing loss, and so far no progression of auditory symptoms.

As far as my symptoms not being relieved by rest… actually they are, it’s only the nausea that isn’t. I typically wake up feeling quite sick to my stomach. That usually goes away after breakfast but comes back after I’ve been active for a while. Once it occurs with activity, it takes a long time to go away – usually requires an evening nap. The woozy, motion sensitive feeling definitely gets worse with activity and goes away with rest.

I’ve also for several months noticed a consistent positional vertigo that’s very BPPV-like in timing and duration, but it occurs when I get up after lying flat on my back for a few minutes. Maybe not exactly BPPV-like since it’s pretty mild, and involves a falling forward sensation not so much sideways rotation, but otherwise quite similar. Takes a few seconds to begin after getting up, builds to a peak, then goes away over a period of 20 seconds or so. It does NOT happen as a rule when I lie back, only when getting up. (It isn’t orthostatic hypotension either, at least I don’t think so, as I’ve had that and it always involves lightheadedness. This is definitely vestibular.)

I’ve been diagnosed with MAV, but apparently my rotating chair and caloric test results showed an asymmetry in my vestibular systems, my left ear being worse than my right.

This confused me as I thought MAV meant it was migraine, i.e. centrally caused. My otoneuro explained it by telling me that years of untreated MAV had led to damage in my left vestibular system.

So if we believe her explanation, then MAV apparently can cause more peripheral ear problems (in my case vestibular).

I don’t think anyone REALLY understands it. I think MAV covers a continuum of related disorders and symptoms (as of course does ‘migraine’ itself, e.g. abdominal, visual symptoms) and is a useful diagnosis and starting point for treatment. Does it matter what the name is? What matters is what helps it!

I was wondering, you said you’d had various MRI scans, all pointing to MAV as a diagnosis. Have you had an MRI of your inner ear systems (vestibular and cochlear?) to rule out vestibular neuritis and other peripheral ear disorders?

Dizzy Izzy

There’s a paper u might be interested in about auditory symproms in MAV. It’s actually been uploaded to this forum. In this study, 8 out of 10 subjects presented with UNILATERAL auditory symptoms.

mvertigo.org/articles/topama … igo.05.pdf

(my link takes a while to load, so u may wish to access it via the archives)

D-I

Thanks dizzyizzy, I hadn’t seen that paper. It does say unilateral, but it’s not always clear what that means. Are the symptoms sometimes in one ear and sometimes the other, or are they ALWAYS in the same ear? Still, thanks for sharing your own case info as that makes it more plausible (to me anyway) that there could be symptoms always on one side.

Yeah, migraine isn’t “just” a headache. :frowning:

I might have had migraine for several years. I first started getting spells of abdominal pain and nausea in early 2004 that would last several days, then weeks. I was worked up for digestive issues, had upper GI endoscopy, ultrasound, CT w/contrast… all negative. No hint of anything vestibular though, until '09.

Although, I do recall about 20 years ago feeling the floor “bouncing” under my feet every once in a while. I actually had an EEG done back then for it, which was normal. Eventually it went away and I thought nothing more of it until now.

I’ve had two brain MRIs and a CT scan. The first brain MRI was written for the IACs, to r/o mass lesions and VN, so yes they’ve pretty much ruled out everything else that could be imaged. To muddy the picture even more, they also found a congenital upper cervical deformity causing platybasia, but no sign of a Chiari or anything that could cause brainstem symptoms.

Hi fizzixgal,
Migraine is also positional. Here’s some quotes from a migraine specialist…

“Instead, in or around your head you may experience pressure, fullness, tightness, heaviness, thickness, numbness or soreness, or you may have swelling, burning, buzzing, vibrating, boring, piercing, drawing, expanding, tingling, trickling, bubbling, crawling, shifting, or rushing sensations. These sensations may be aggravated by bending over, straining, sneezing, coughing or exertion, or if you shake or jar your head.”

“Vertigo is also positional in patients with vestibular dysfunction due to migraine. This may be another example of sensory input (in this case, information about your head position derived from the semicircular canals) feeding into the circuit of migraine as a trigger.”

“Normally your vestibular system controls your balance by means of the fluid-filled semicircular canals in the inner ear. These peripheral sensors are connected by nerves to certain pathways and centers in the brain stem and elsewhere in the brain, and when vestibular function is disturbed by migraine, it may be felt as unsteadiness, loss of equilibrium (like just getting off a boat), being off-balance, veering, swaying, falling, rocking, vertigo (a spinning sensation) -or just vague, nonspecific dizziness, lightheadedness, or wooziness…It has long been recognized that car sickness and other motion-induced ills are commonly related to migraine and reflect the heightened vestibular sensitivity of certain individuals, courtesy of their relatively low migraine thresholds.”

You also mention abdominal pain and nausea. Migraine can affect the stomach also. The same doctor that wrote the above quotes writes about that in his book…Heal Your Headache.

Migraine can be affected by motion and our positions. That has been the case with me when I was in the phase of heightened sensitivities when I was still under assault by triggers I had not identified and remedied yet. When I have flare ups since, my motion and position can make me feel worse. Even at my best I can’t lay flat, I must always be propped up a bit.