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A Strange Occurrence

As most already know I have been chronic for a number of years, six to be exact and despite being heavily medicated on Propranolol still suffer constant disequilibrium/imbalance on a daily basis. Often very few other symptoms but that remains. Another constant is that however imbalanced I may be indoors I am always worse outside. Outside I always find it difficult to look around. If I do I either veer, feel more off balance or simply queer. I was told years ago by VRT that I must always walk to a fixed point. I have long realised that has now become a fixed habit but continue to use it to get around. Turning my head on the move outside is always difficult, sometimes totally impossible. Bearing all this in mind the following incident appears to me as being of Considerable Significance although currently making sense of it still seems beyond me. Am rather hoping, a pretty forlorn hope I suspect, somebody may have an opportunity to mention it to some inspired medical professional who may be able to throw some light on it.

On the afternoon of Christmas Eve in both bright sun and a very brisk and cold wind (normally both triggers) we went for a walk. When I left the house I wasn’t feeling particularly good but insisted on going knowing it unlikely we would be out on Christmas Day due to the cookery burden that always involves. I was very pleasantly surprised to find walking much more comfortable than usual and even more pleased when I found I could easily turn my head left and right without bringing on increased symptoms and then, just as if I was stepping through the Looking Glass into Wellness, in the course of a couple of steps my constant imbalance which has been with me whilst in motion just stopped. Abruptly. Suddenly. Gone. An expression I really would prefer not to have to use but it’s the best description. My balance had reverted to ‘Normal’! Twice at each crossing I performed the Green Cross Code for the first time in years. I walked a figure 8 on the cycle-path to prove the difference to Him Indoors and I must admit I marvelled at the dramatic improvement. I also suddenly noticed a few minutes in to this experience that my vision, which is normally good, was suddenly extra sharp, extra bright and more 3D rather like putting on the new prescription specs first time. Father Christmas had indeed come early. We were out walking about 40 minutes maybe. When we entered our own property I positively bounded up the two sets of steps and remember thinking I felt exactly how I had felt before MAV turned chronic.

Of course it couldn’t last. Just as it had started in a step so it stopped within five minutes of me being back home. Instant and Total reversion to my exact previous baseline. It was sometime later Him Indoors reminded me that that wasn’t the first time this had happened. I’d completely forgotten but he’s correct. On three former occasions over the previous couple months something similar had happened. Much less dramatic and for half the time period but virtually the same the main difference being on all three occasions the dramatic changes occurred outside both start and finish.

Thinking back now the whole experience seems really odd but my question would have to be what can bring about such dramatic change. That’s what I want to know. As I said to Him Indoors I feel like I have found the lock. Now all I want is the key.

I was so glad I wasn’t out alone otherwise I might have subsequently convinced myself I’d dreamt it. It was real. It was the first time I have felt completely normal since this went chronic six years ago. What can give such a short sharp interlude of normality? What can cause such sudden and dramatic change. I have already run it past my own doctor who has gone away to think about it but before she did her answer was ‘Blood Flow’. And, as an afterthought, what, if any, is the connection to the fact 36 hours later I hit total collapse with the worst attack I have ever had, so far, since medicated.

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Have they done a contrast MRI of your head and neck? I watched a video called Living Proof from the founder of MS Hope. He had a surgery for blood flow in his neck that relieved many of his symptoms - from blocked blood flow on one side of his neck.

https://www.amazon.com/Living-Proof-Matt-Embry/dp/B07D7PF9HR

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That’s most strange, Helen. In my years of imbalance, it varied a lot but never for a moment went away, until it just did!

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No never had contrast MRI. Just one head only although I had to travel miles to some special high density machine which met neuro-Oto’s exact specification. He was very insistent on that.

Whole thing truly weird. It was so sudden and dramatic. Just like somebody had thrown a light switch on then off again. So precise. It’s incredible how having felt pretty much the same baseline for years it could just all flip through to what I can only describe as, because that was what it was, Total Perfection of balance and spatial awareness. Then after 40 minutes reverse as a sort of complete unit, no under lap, nothing. It was such distinct transitions. Thinking back today, two weeks on, feels almost as if I’d managed to slip into somebody’s else body temporarily to give it a Test Drive or something. I don’t mean it was an out of body experience though when I write that. Nothing like that at all. The more I think about it the more Inexplicable it seems.

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That’s how it came on for me. Like a switch.

There is this very interesting recent discovery:

https://mvertigo.org/t/inner-ear-pressure-release-valve-found/15685?u=turnitaround

Could it be your valve (if one exists in human ears) opened and released built up pressure? Then closed and let it build up again?

Inner ear pressure is thought to distort the inner ear anatomy and so the response of the labyrinth sensors gets corrupted (with knock on effect to brain interpretation) … or at least changed from expected response.

Releasing the pressure might let them operate normally again.

But this is learnt so any sudden change in pressure might cause vertigo (ie in either direction) and then confuse the brain until it gets used to the new ‘normal’. Hence the two week hangover?

If pressure were for some reason not to be well regulated and rose slowly, you end up with long cycles of build up, vertigo, hangover, build up etc.

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That could make sense to me certainly. Each of the three previous less dramatic occurrences were also followed by a bit of a relapse and in all four the reaction could easily be interpreted as in direct proportion to the intensity of the change.

This last attack which started Boxing Day was somewhat different from original full on vestibular attacks but I have been assuming that’s because the others occurred pre-meds. This time I was amazed at my lack of ability to concentrate (more than Brain Fog) on anything at all. I started thinking Basilar but really I know it wasn’t. I suspect part the time I was barely conscious. And lots of vertigo. Still very much ongoing.

really don’t like the sound of that but it could possibly beginning to ring true unfortunately.

Neither did I when I first considered it. But eventually for me it stopped happening.

It’s possible that for me the pressure in my ear no longer rose to a point where it needed to be released so no vertigo or vestibular ‘attacks’ anymore. (If this were the cause)

So there’s no reason why that shouldn’t happen to you at some point.

I wonder if your propranolol is helping to reduce the pace of the build up?

Look this is just one theory. There are others. But I keep coming back to the inner ear being at the root of all this because it just makes so much sense.

Given the eye can have glaucoma, why can’t the ear have similar issues? (It’s never as bad for the ear as apparently the pressure never builds up like it can in the eye btw - that’s why I think people always get back to baseline because all the changes are reversible.)

At worse this is basically an undesirable hysteresis within a control system. And I’ve always maintained that MAV is down to an instability. This model would fully explain that.

No proof, just a hunch! And purely an opinion!

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Oh I don’t doubt there could be ear involvement if only as per that paper which suggested fluctuating hormones cause changes in ear pressure. By timing mine is proof hormones are involved in some bizarre way or another. I don’t profess to understand the mechanics as an engineer could but it seems obvious only certain things such as blood flow or some mechanical (valve opening) operation could cause such sudden changes. A valve opening then closing would sound an idea candidate to get that precise sort of change.

No idea. No idea how it’s supposed to work or even if that would be a good or bad thing. All I know is Propranolol is good at tackling the migraine element and in fact until this most recent attack I would have said and the true rotary vertigo too. Come to think about it and I only just have from this angle this most recent attack I had few migraineous symptoms . I particularly noticed there was no rear head pressure, no photophobia or sound sensitivity.

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The disconnect (or very loose connection) between migraine and vestibular attacks for me has been a big flag that my first Doctors vague statements were not a good explanation for everything that was going on for me.

This was compounded by the Amitriptyline ridding me of the terrible migraines but doing nothing to defend me from vestibular attacks or imbalance.

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I have had something similar. When I first became pregnant and this showed up I would randomly just be sitting there and all of a sudden I would feel a shift of pressure in my head and all of my symptoms would just disappear very dramatically and I would feel normal and relaxed. It truly felt like a light switch would get turned on. Wasn’t a daily occurrence but every couple days or once a week maybe. Only would last for a little bit before I would feel symptoms slowly coming back. When it all came back postpartum that happened again. All my doctors have just shrugged not really knowing what that is. I haven’t had it happen in over a year and a half now.

Shows you that if you can stop the mechanism of the dysfunction you have the ability for normalcy under there.

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Thanks for responding. Mine lacked any other indications. I felt no change in pressure. No other indication at all. As you say certainly shows its all working underneath.

I agree, it can get weird sometimes.

This has me seriously thinking about your specialist’s thoughts on ‘blood flow’.

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Thx Em. Fascinating. There really are so many possibilities that should be investigated by doctors but all they do is throw more pills at us all.

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Very interesting Flutters. I’ve been a believer in “getting the blood flowing” for quite a while too. That was one of those ‘old-fashioned’ pieces of advice that I grew up with from my parents but it makes a lot of sense. I know that if I’m feeling off I will usually feel better if I get outside and have a brisk walk. Also I have been taking Betahistine for a couple of years now and it is said to work by increasing the blood flow to the inner ear. The right side of my neck has always been a problem for me possibly stemming from incorrect posture. Its where I would get most of my migraines, my right shoulder is always stiff, the right side of my neck is always a bit sore and its my right ear that has the tinnitis and hearing loss which has got worse in recent months. Even my right eye is worse than my left! It has a thinner optic nerve. “That’d be right!” I said bitterly to my eye doctor when she said that. “Everything on that side of my body is not working as well as the left”. So it could all stem from a blood flow problem. It’d be good to have that Doppler test and see. I’ll just hop on a plane to Poland … oh, whoops! …planes all grounded :slight_smile:

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Good luck Dizzy! That video just struck a cord and resonated when Helen @Onandon03 described her latest mystery episode. For me MAV is all right sided though TMJD is left. All of my other structural issues are left side, except where I’ve managed to damage both sides starting on the left. I was referred to the MS Hope site by my Physical Therapist to check out the diet and supplements. The point is to remove all triggers and drive down internal inflammation. For me it’s a last ditch attempt to avoid another high risk, low success rate major surgery. The diet is an elimination diet variety of Keto. I highly recommend it if you can pull it off. It helps to have fear of God motivation in your back pocket.

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And @DizzyDame . But bit of an aside really but interestingly that makes all three of us right sided sufferers. Makes me wonder about dominance. I am right handed, are you two the same? But that in itself is a bed of worms because there’s all the opposite side brain affected stuff one hears about. I was amazed when ENT told me my left ear is my worst (neither are bad). It’s always my right side I cannot lie on if acute yet this attack if I run a Romberg test I am far better, in fact strangely perfect and best ever, standing on my right leg. Yet turning my head to the right is always the more problematic. During the current attack I have had a full day with a strange ‘plank in my eye’ feeling but only in my right eye and when acute and sitting up I always lean towards the left.

When I was (mis) diagnosed with Menieres and given Serc/betahistaine the reasoning was that it improves blood flow in the inner ear and lowers the build up of pressure. It made sense at the time but sadly Serc did nothing for me. Glad it helps you DizzyDame.

My “deficits” are on the left but I’m right handed. Interesting about posture - I have scoliosis with the curvature to the left in my lower back, sometimes wonder if it’s connected to everything. It’s like looking for a needle in a haystack. Maybe we all have a propensity to migraine but something else going on too that gives us MAV 24/7. My 18 year old son,started having tinnitus 3 years ago - had wax removed, no effect. Left ear worst affected. Then a few months on he started to have migraine headaches and a few weird blackouts. He doesn’t get dizzy and is on 20mg Ami. He’s never had motion sickness, abdominal migraines, head trauma or anything like that as child - only me as a genetic link (no history at all of migraines in family except me). He was taking Roccutane (acne medication) when it kicked off and so stopped in case it had “triggered” migraine and tinnitus but I guess hormones could have been in play too (given the acne which no one else in the family has ever had)

I try to get out for a country walk most days, my son walks at a real trot and I often feel good with the blood flowing but if we stop to “catch our breath” or have a drink then I begin to feel off. I mentioned to a specialist that when I have a left sided migraine I get a really bad pain from behind the base of my left ear going up my skull and over the temple to the left eye and he said he thought that blood could be pooling in a vein behind the ear that was closed at the end causing inflammation and the pain.

Hope you are recovering Helen.

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Agreed. Have thought this so many times. Doubly so if the other weaker point just happens to be something that may connect with the vestibular system, ie ears, eyes, (I’m not a doctor but maybe) spine.