A Strange Occurrence

One of the first things my neurologist did when she diagnosed VM (at my suggestion rather than just migraine with aura) was to refer me to an atlas orthogonal chiropractor. Iā€™m pretty certain the arthritis in my neck is a contributing factor for MAV - the result of four separate whiplash incidents in auto accidents. (None my fault so far.) I know one of the young new chiropractors told me vestibular issues can often be tracked back to whiplash - with about a 15 year gap in time.

I also know that when my atlas is out, my whole system is out and MAV is intractable until it can be set back in place again.

Not sure if the rest of my spinal and osteopathic issues contribute to MAV. Maybe. I have a surgeon with a suggestion he might wish to place a hardware store worth of metal in my anatomy. Iā€™m none too keen on that thought, and MAV figures in.

Interesting side note to @sputnik2, my sister has thoracic scoliosis and had a full foot of her spine fused together about 35 years ago. But she has no MAV - even though one of the rods is broken and is carving a groove in her vertebra. I have the worst type of PCOS. She has a very mild variation. We both have faulty thyroids. It really is a needle in a haystack. I wish we could be viewed holistically - or be limited to one disastrous diagnosis at a time.

A few days ago my blood test results came back. Another doctor than my own had requested them saying the previous was well out of date. He suggested could be thyroid. I mentioned B12 as I had before due to family connection so that was added in too. Both came back negative. Main result is I am extremely low in Vitamin D which, lifestyle and British weather taken into consideration, is no surprise. Rather spookily the same day I received the results there was yet another newspaper article on the links between dizziness, most particularly the BPPV type, and low vitamin D. Many papers record the same and, as did the current newspaper article, advised taking both calcium and vitamin D to replace.

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I take 5,000-10,000 IU of Vitamin D daily. I get dizzy when I run out of it.

If MAV is the correct diagnosis, this makes perfect sense. Chronic 24/7 MAV is basically one attack interlocking over another with no downtime. When it starts to break up like this then the attacks are becoming less frequent or less relentless.

Mine stopped exactly like this. I went from all bad to occasional normal but mostly bad, say 80/20, to eventually 50/50 to (three years later) 1/99, to now where I am 0.1/99.9 good.

It may be there are better meds out there for you - canā€™t remember what youā€™ve tried. Whoā€™s your MAV doc?

I would say that this - especially the emergence of a pattern of better periods - as signs of the relentless attacks breaking up.

Hard to do, but try to list the things you did in the days leading up to the good days. There may be an insight - or maybe not, sometimes the triggers are too tangled to untie.

The absolutely amazing thing to remember is you can and will feel normal again. It may be just for short periods at the moment. Letā€™s hope they get longer, more frequent periods of good.

Have you noticed any change in the bad times? As bad as ever?

Anyway, Iā€™d take this as a great sign youā€™re on the right track. Maybe look again at meds and see if thereā€™s anything helpful you can add in.

:sunglasses:

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Thanks for your thoughts. Your take on it is really interesting. Iā€™ve noticed various improvements in the past that have followed your pattern but somehow didnā€™t link this one in with those simply because these were so very short (the longest lasted no more than 40 minutes) and the longest one so dramatically from one extreme to the other as in retrospect to almost seem surreal. Letā€™s hope youā€™re right though I am not quite sure how to square the full on huge attack, worst since premeds, that followed 36 hours later and has lasted virtually three weeks.

In answer to your questions. I take Propranolol. I donā€™t have a MAV doctor, never have. I have had diagnosed from two different specialists, one neuro-otologist and one neuro but neither were prepared to become involved in case management. I trawled through my memory but cannot see anything before significant in favour though had I not chose to ignore them I did experience a few indications something adverse was on the way. One day out walking I really started to feel I was floating, first ever for me and several times looking down at a book or sitting up in bed I had bit internet vertigo something I havenā€™t experienced since meds only a couple of times each pre earlier Mike attacks. No I had done nothing different. No routine change.

The following acute attack was quite a bit different from those premeds. Somewhat milder as I had come to expect. I had no photophobia. One day I had a strange feeling there was a plank of wood in my right eye, very uncomfortable, Arrived suddenly and departed after maybe six hours the same, another first. Since the attack I have been experiencing a new ear fullness sensation which is really adversely affecting my balance and lots of BPPV type stuff which again I havenā€™t really had for years. It was my first ever symptom.

Oh I regularly trawl possible Add Ins. And discuss them with my GP. Itā€™s strange how Topiramate has been suggested time and time again and I rejected it. This time in desperation I suggested I try it and my GP said sheā€™d rather I tried anything and indeed everything else first! Sheā€™d rather I didnā€™t have it because itā€™s a long term commitment whatever thatā€™s supposed to mean to a person whoā€™s done over five years of Propranolol already. She wanted me to up the PP again but I have reached the conclusion rightly or wrongly the stuff it hasnā€™t improved in five years it isnā€™t going to improve at still higher doses. I toy with Pizotifen up weight gain isnā€™t something anyone needs with Covid around so Iā€™m still treading water.

Thanks again for your input.

Are you in the UK?
If so, have you tried Dr Surenthiran?
Heā€™s the one who sorted me out.
He only does private now I think but Ā£300 (or thereabouts) although expensive is a pittance compared to the cost of being unwell for years and years.
Good luck with whatever route you take!

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Thanks for your thoughts. I knew you were under Dr S. Yes, Iā€™m out in the South West of UK. Expense wouldnā€™t be the problem. Dr S would be way too far for me to travel. I get motion sick inside 20 miles. From all Iā€™ve read I guess heā€™d put me on Pizotifen. Iā€™ve see the so called top expert my side of the Capital and she said itā€™s all trial n error and just to Wade through all the available alternatives until ā€¦ and I think sheā€™s most probably right.

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Travelling with this condition can be horrible. But if thereā€™s even a chance he can help, isnā€™t it worth trying? Perhaps when lockdown etc is over. He helped me a lot, as much with the pep talks as the medicationā€¦

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Just maybe The Strange Occurrence isnā€™t quite so strange after all. What made it so very strange, surreal one might say, to me was the speed and completeness of the changes. Itā€™s puzzled me and my GP I think ever since. I couldnā€™t think of anything that would cause such quick change in a vestibular context. However ā€¦

Four weeks on from this huge Boxing Day attack I have been suffering virtually constant (through my waking hours, not once lying down in bed) ear pressure which is completely ruining my ability to balance. This morning soon after dawn I walked to the bathroom perfectly balanced and without any oncoming pressure at all and I thought the ear pressure was at last gone. Climbed back into bed to drink my morning cuppa and despite waiting for it to cool considerably within minutes up starts a Night Sweat experience. And instantly, like water flowing from a burst dam, my ears once more are completely full of pressure which has remained long after the night sweat recedes. Just maybe for some reason the reverse happened as soon as I walked out on Christmas Eve without me even noticing. My Him Indoors suggested some change in atmosphere, the difference in humidity or something. I donā€™t specifically remember having blocked ears on Christmas Eve but I do recall I wasnā€™t feeling particularly good prior to leaving the house.

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Iā€™ve always wondered if hormone lead hot flushes could be changing the physiology of the inner or middle ear. Maybe there is an ETD or endolymphatic fluid impact?

Maybe a vicious cycle of a migraine impact on the local physiology. Chicken and egg? All I know for sure is that ear upset can cause migraines. Perhaps itā€™s circular though? We also know migraines are associated with swollen eyes.

I do find it rather incredible that oto-neurologists donā€™t seem to have a complete grasp of the associations between ears and migraines. All in the brain? I donā€™t think so!

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I keep coming back to this paper which you found and posted originally ages ago. Makes perfect sense to me and more so every day at the moment.

All so very frustrating because seems nobody with an clout in medical circles seems to know or have any interest in investigating and thereā€™s no specific treatment. And IMO unlikely to be for long time. Unlike insulin thereā€™s no way of monitoring and adjusting hormone levels on a daily basis. And worst still beyond a certain age it is dangerous to use HRT for risk of cancer. My GP tells me even the locally applied (very low) estrodial stuff will certainly cause an increase in the hot flushes which is exactly the opposite of whatā€™s required.

https://www.intechopen.com/books/sex-hormones-in-neurodegenerative-processes-and-diseases/sex-hormones-and-inner-ear

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And that gets me onto another major problem with clinical treatment.

Measures of anything are taken as snapshots in the clinic.

There is no ongoing monitoring of anything. Given MAV is so unstable and symptoms fluctuate so much, has anyone actually thought about developing monitoring you can carry around with you to measure things and correlate those things with experienced symptoms. I suspect not and sadly perhaps the technology does not yet exist to facilitate that.

What if someone actually worked out that the pressure of the inner ear is actually changing?! Could that be why you are feeling pressure?!

What if they could monitor the lining of the middle ear and found that over time it became more and less swollen and a level of swelling corresponded with certain symptoms?

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Btw Helen I used to notice fluid in my ear that would drain away every morning when I righted myself from sleep. As the years went by this fluid would decrease very very slowly until I no longer had this peculiar morning sensation. My consultant offered no explanation.

One of the things I noticed was my Eustachian tube would get stuck up. Absolutely must have been related to this fluid. I noticed by certain movements including eating it would sometimes free up and I would get a feeling of squishiness for a bit as I moved my jaw.

I often wonder, though hard to detect directly, if there was some impact to my balance from that unhealthy phenomenon (that said Iā€™ve noticed it to a much lesser degree in my ā€˜healthyā€™ ear so suspect its not completely unnatural, its just a question of extent).

There has definitely been a correlation between the decrease in that fluid level and my symptoms over the very long term.

I experience no fluid or sense of fluid at all in my case. Just ear pressure. And the pressure/balance is in direct proportion Iā€™d say. No pressure and balance is normal. Maximum pressure and I can barely stand yet alone walk. I am wondering whether the Venlafaxine would stop the night sweats and that in turn would stop the imbalance.

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Yeah, wasnā€™t suggesting things were exactly the same, but a lot of symptoms are common. Just thinking aloud about what the underlying common aetiology might be because there is surely a large overlap given the symptom spectrum is so similar.

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Absolutely. Thereā€™s bound to be.