How can this be a constant thing 24/7 but so fluctuating?


I haven’t been here in awhile, but still having vertigo most days. I’m curoius how this MAV or VM can stay will you for years and on a daily basis. I’m on 20mgs propranolol twice a day, tried to go up to 30mgs and got dizzier,so doc sail keep on the 20mgs. I had been having awful anxiety with it but am trying my best to stay calm as we know it makes it worse. But I want to know how the sensations can change from months to months, starting with constant rocking/swaying for a bout a year, now it bobbing, raft feeling like riding a small wave, dropping feelings while sitting or standing, most of it I feel when sitting and standing. Stress makes it worse also. I just want to know if anyone else has their sensations change? My doc says its normal, but who knows. Have you all had this for years? I don’t have the total headaches so much anymore, maybe a day during the week but when I do the dizziness is much worse,does this sound normal? But I have the dizziness most days and I’ve been lucky in the past week to have a few days of very low dizziness, but then it all comes back… Does this right for MAV? Thanks for any help.

That’s the million dollar question I’m afraid.

I’ve done a lot of reading and there is no convincing explanation of MAV.

My personal ‘model’ of what might be going on is this:

  1. Initially there is some injury or change to the ear that causes fluid to escape from the inner ear and possibly let air bubbles into the ear. You feel masses amounts of imbalance. Eventually the breach heals, the fluid is replenished and within weeks you may feel well again.

  2. Unfortunately the incident causes pressure to build up in your ear as it tries to replace the missing fluid. The air bubbles might corrupt this process somehow so that too much pressure is built up. Perhaps the stress of the experience contributes to this.

  3. The pressure gets to a point where you start to feel dizzy, and hear tinnitus. It may give you migraine.

  4. Eventually after some days, weeks or months the pressure is high enough to breach the outer window of the inner ear again (which may itself have been weakened in the original incident and not healed back to full strength?). Pressure is released. Fluid might move rapidly for a while so you feel vertigo as it moves past your rotation senses. Other times the leak maybe slower so you experience less dramatic symptoms of false movement, perhaps explaining the slight swaying symptom (although this might be simply a result of pressure on the nerves)

  5. Cycle repeats

In addition the pressure build up is probably exacerbated by the stress brought on by the condition’s horrible symptoms.

As you can tell I don’t believe migraine is he cause of MAV, just one of its nasty symptoms.

This is all just a hypothesis.

It may eventually resolve itself once the amount of air bubbles is reduced or for example you ensure your stress levels are low enough not to exacerbate the situation.

The only way to beat this, imho, is to be extremely patient and tolerant of the symptoms and don’t let it get to you. Very very hard I know.

@turnitaround. I was about ot start a new thread with my personal ‘theory/conclusions’ - at least in my own case, but you have pretty much just said it all …just a bit more technically than I could have managed:slight_smile:

I’m not sure about the whole fluid/ air thing - but you may well be right, as ‘fluid imbalance’ was the (old?) explanation for Meniere’s. However, I’m quite sure that pressure is the root of all evil for me.

A drop in the barometer pressure seems to be the biggest trigger which is totally beyond my control.

Once that has got things going, added ‘triggers’ like bending forward, looking up towards the ceiling, or sleeping/lying on my left (affected) side - unless bolstered up on 3 pillows to almost sitting position, increase the volume of tinnitus and ultimately to earthquakes and all the other unpleasant array of symptoms!

Once symptomatic, the ‘secondary’ set of triggers add to the unpleasantness and can set things off of make them worse:
Computer screens, caffeine., fluorescent or bright/ flickering lights, loud/sharp noises, vibrations (like a motor car idling or bumpy road),

NOW! My theory is that - what if there is something in the neck or shoulder/upper spine constricting some tiny nerve that sets off or at least exacerbates, the whole chain reaction through the ear/brain???

I have a slight curvature of the spine - not enough to be noticeable unless one really looks at one hip being 'larger ’ than the other - but enough to have caused me increasing discomfort and pain right down the right leg from inflammation that then affects a nerve. As no painkiller can stop nerve pain, one has to try and avoid and treat the inflammation.
As my affected ear is the left…I am currently experimenting with trying to keep the area ‘inflammation free’

Last weekend I did a relatively big house clean on Friday ( bending, looking up to dust etc), which resulted in a sore back and discomfort sleeping…so I uncharacteristically slept on my left side, instead of my normal (LEARNED) flat back. Hey presto, about an hour after getting up the next morning-- Major earthquake, followed by an aftershock, vertigo, nausea = a stemitil, tranquilizer and 2 hrs flat on my back counting cobwebs on the ceiling! By about mid afternoon I was fine! All this, I might add, after being almost 100% for a couple of weeks.
I am sure that, at least for me, there is something that ‘constricts’ and causes pressure , when I lie on that side (I sleep with one small pillow), even with a pillow between my knees and another supporting the right arm.

However, I’m not sure how this theory ties in with the visual symptoms and irritation form computer screens!!?? I have discovered that my multifocal glasses are a problem with the computer and if moving about with them on. I can work at stained glass with them on, and am currently using store bought reading glasses for reading labels/recipes etc, but think I might need to get specific lenses for computer. :unamused:

Any ideas or comments welcome. I have an unreasonable need to know WHY!!!

@dizzy62 I don’t know if I officially qualify for MAV or not - but I understand the fluctuating and ever evolving symptoms well!! Never a dull moment, as they say!:confounded:

Computer and TV screens? Oh that’s easy. Ear is hard wired to vestibular circuitry, and once you upset that the brain may be less tolerant of flashing, moving images.

You have to rehabituate to artificial light and video screens or calming with meds might do the trick.

im so into this conversation as this crap annoys the s##t out of me and the one thing I don’t get is how its so constant when “normal” migraine is episodic! I think if your both right you need to call a universal ENT meeting :slight_smile: and explain this to them!

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@ James…strangely, the TV screen does’nt seem to bother me, unless the actual programme has those flashing, disco kind of shots of very fast panning. I’m kind of leaning towards the multi-focals and computer screen combo being an issue. I can do the phone with simple reading glasses, but they don’t work with a computer, and it’s a battle to read without for any length of time. Sigh! slowly, slowly catch a monkey!! (or BEAST!)

I’m rather inclined to go with James here and say that, for at least some of us, the headaches are caused by the MAV/whatever, rather than the other way around. It all boils down to SOMETHING throwing our delicate brains into a tizz!!! :confounded:

its very rare I get headache to be honest mazzy so I think your right!

Let’s open a practice guys … we’ll do the alcohol-chill diet! (no caffeine :wink: )


mazzy, antidepressants are actually given for nerve pain!!! I have peripheral neuropathy and was offered an antidepressant a while back to stop the pain. I was rather stupidly somewhat indignant and told the doc I wanted an explanation, not something for depression that I didn’t have! Poor chap. He then went on to explain that no one understands how they worked but they do. So maybe you are onto something there. Maybe that is part of the reason why antidepressants on their own work so well for some people. Maybe the rest of us have twitchier brains!!!

Well, maybe just a little caffeine/chocolate …???:relaxed:

@ Revolving … Well, there’s something good to know for future reference!

About 20 years ago when I herniated a disc in the lower back which pinched the sciatic nerve causing acute pain and numbness down the leg and foot, the neurosurgeon said there was no help for the pain but prescribed a mild tranquilizer that made me so high that ‘was feeling no pain’ for a couple of days :grin: This was when I HAD to learn to sleep on my back, as of course the disc problem was on my ‘good’ side, and I was told that sleeping on the back is the best for your spine anyway!!

But yes, I’m sure that some brains are more sensitive to different things - the secret lies in trying to find what is right for each of us!!! Easier said than done!!

When I went in to see the doc yesterday with a big smile on my face to report on topiramate he nearly fell off his chair! He said “you mean it has actually worked?, with no side effects?, and at such a tiny dose? Gosh, I have heard so many horror stories about topiramate I wasn’t expecting that”. I guess he didn’t trust my neurologist to have worked out what my brain was up to and needed to quieten it down or maybe it is all still a mystery to him, who knows. Anyway, my brain seems happy, played music this morning trying out things with my cello that I never dared to do in public before (the mind boggles!) and was actually complimented on my playing so that was just wonderful. I think all that whizzing about electrical activity that was going on before was doing me no favours. I just wish we could find out what sets it off in the first place. My theory is that it plays havoc with various sites in the brain including the balance organs, cognitive areas of the brain, vision, olfactory nerves and quite possibly the vagus nerve. That is why, in my humble opinion, we have different and similar symptoms depending on how many areas of the brain are affected but the common one is the balance system. Why don’t we all have EEG’s? I was expecting that as one of the investigations in the beginning because it would make sense to me. That way they could map what is actually happening to all of our brains and maybe, just maybe find a common denominator. Hey ho, we can but surmise☺

@ Revolving…So glad to hear that the topiramate is working so well for you! Great that you are able to really enjoy your music again.
I am quite sure that we all have different paths that the errant electrical signals take which gives us all these weird and sometimes seemingly unrelated symptoms…why one med will help some people, but not others etc.
I would just love to know why it all starts in some people and not others in the first place!! My bet is still on some sort of genetic susceptibility …but still…what caused it to kick in???:confounded:
Have a nice week-end!!

Thank you mazzy, you too☺