Vestibular function loss

Does anyone know if VM can cause loss of vestibular function?

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Well that’s what dizziness and imbalance is, arguably. However, I believe it’s fully reversible having recovered my balance 100%. Everything just needs to get back to stability.

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I agree I just didn’t know if it caused permanent damage to the vestibular systems in the brain or ear

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My caloric testing showed 79% vestibular loss on my left side. I have no idea if that is due to the VM, VM is due to the vestibular loss or if the test results are correct. I’ve read on Dr Hains website that these tests can be difficult to administer and have conclusive results. So, of course we have more questions than answers once again! :upside_down_face:

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Nothing that tells you that’s permanent though. That’s a brain interpreted result so chances are it’s just changes that can reverse and or be recalibrated by the brain. They cannot claim that means permanent change. I wonder what a 10 year follow-up would show?

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Exactly! or if it real in the first place.
Since the testing it so difficult to execute accurately and there are few testing methods… no one really knows.
My Dr said that “it’s like Bell’s palsy of the inner ear. The function will return but it will take time, although I can’t tell you how much time. Just go on about your life and it will compensate.”. Very vague information for a girl who can hardly walk.

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The vestibular system is amazingly complex. I don’t think the science is great and the ability to see (imaging) and test its many parts is not very good. There seems many conditions they like to diagnose, but these are mostly groups of symptoms and theories about the cause. The best thing we typically have is evidence based treatments that seem to help some people some of the time. And yes some people are able to recover significantly, although for many the condition may recur in the future.
I am certain that for many with these issues, there may have been something damaged that will never fully heal, but we often can compensate over time such that we may regain much of our vestibular function.
If you see an elderly person that is unsteady and unbalanced, i contend that is very much due to a degraded/ failing vestibular system much as they also have other systems like their cardio pulmonary systems failing and causing issues. In this case they can improve their balance through therapy, but will not be able to repair the vestibular system but just help improve its function by teaching their brain to compensate. Some of us are.the same even if too young for this fate.
I play ping pong against myself every day at least once to help with my balance and vestibulo-ocular reflex (ability to follow moving things or scan a shelf looking for something on a grocery shelf). This does help, but I am still unbalanced walking and still struggle finding things on grocery shelves and it is painful to do that.

Of course everyone on this forum has some symptoms in common but likely have different causes and some may be able to recover fully. I tried all the drugs you hear about on this forum and none of them did anything for my balance issues. Some may have helped somewhat with the MAV symptoms I shared with most on this forum, but I also had improvement randomly over time when taking no drugs so I don’t take any daily drugs for those symptoms. For me the only thing that helps clearly is when the condition peaks with an attack or near attack, Valium helps me in a fast and obvious way. I also find drinking lots of water helps especially when I have bad MAV symptoms. I avoid high sodium intake and take a diuretic that seems to help reduce attack frequency and intensity pointing to fluid level and salinity within the vestibular system as part of the issue. Wish there was better science and a surgery that could fix this but I suspect we will need lots of advancement before this would be possible. I definitely suggest to keep moving and fighting as I always get worse if I stay immobile.
Wishing everyone luck in their search for improvement from these life altering conditions.

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To go right back to the original question I think VM causes temporary loss of vestibular functionality. Or at least alteration/interference with same. It’s there underneath just currently an interrupted signal blocking it from functioning correctly.

Disequilibrium of the Elderly is an acknowledged condition. Deemed (as your text infers) to be ‘mulltifactorial’ as IMO can be the same or similar in younger people. Deconditioning can also play a huge role. As you say being immobile makes you worse.

Do you/can you attribute your MAV symptoms to vestibular function loss? I would be interested to understand this further. Starting with the premise that the migraine is keeping the vestibular system in a constant state of hypersensitivity which renders it unable to keep us balanced surely taking migraine preventative drugs should control the migraines which would then stop/reduce and break the cycle which surely can only have a positive affect on balance. Unless of course the balance issue stems from some other source entirely. Personally speaking as long I can keep the migraine away with medication/diet and a certain amount of trigger avoidance my balance is virtually ‘normal’, any deficiency I can attribute to deconditioning.

But that then raises the question what’s causing such an extreme form of migraine? And why don’t ‘ordinary’ migraineurs get it?

Perhaps it is just a one sided migraine that impacts just one ear?

There are some symptoms which dissuade me from accepting a simple ‘migraine hypothesis’. Specifically spinning vertigo. This symptom can come and go in seconds or come and go with position, which is nothing like migraine behaviour!

I think it’s equally likely there is a physiological disturbance of the inner ear. That would explain why people with some vestibular injuries (whiplash, head trauma, perilymph fistula … pointing shower in ear) …) have identical symptoms. ie there is a common cause of the migraine (and all the other symptoms). What about potential contributions from other conditions? POTS? … diabetes? …

Essentially a physiological disturbance of the inner ear would change its response to stimuli (especially movement) and push the brain over its tolerance for allostatic load.

Maybe recurrent one sided migraine (if such a thing exists) can cause hydrops on that side? That would explain the progression and acute symptoms better. If migraine can swell an eye, why not cause issues with fluid balance in the inner ear?

How do you get rid of reconditioning? Basically do things that make you dizzy?

I wish someone can help me stop by step because I don’t know where to start.

Unfortunately, there is no step by step instructions. I would start with my doctors.

IMO exposure to things that make you dizzy can help. You must find out what your thresholds are and not push too far. I did VRT and they had my head on a swivel which made me worse so I stopped immediately. I walk at a park by the bay and look at moving water, birds flying, trees moving. I walk moving my head side to side and up and down (not constantly or quickly). From there I walk in supermarkets. I also have developed my own eye strengthening exercise routine, You have to find out what works for you and habituate yourself. IMO don’t push to the point where you are dizzy and it takes too much time to recover.

Yes I attribute my MAV to an affect of the vestibular disfunction. I can see how it could be the other way, but in my case I feel strongly it is not MAV causing it. I started off woth typical meniers attacks in 2009 (15 minutes severe vertigo every month or so), and then had some very severe attacks the last of which put me in the hospital for 4 days and couldn’t walk or drive for months. I believe my vestibular function got worse with each attack. I have been able to avoid the big attacks for a long time but still have small attacks or near attcks I have been able to stop (Valium, water rest). I am also very positional such that lying flat always makes me dizzy and doiig anything where my head is low is a problem. Pretty sure a migraine wouldn’t cause this and I never had migraines until my vestibular condition got very bad. This is a left side issue, and have considered destroying the left side so I don’t get the bad balance information from that side i feel is making my brain think I am spinning, bit am trying to just deal with it at this time.

Lots of things that could go wrong and affect your vestibular system. And I can see the theories on MAV causing it. But for me I think it is in the mechanical part and not the electrical part. Have spent tons of time with the best at John’s Hopkins and they finally decided to just send me down the drug route even though there were some potential issues seen in imaging - the imaging technology is not good enough to really find some things and brain surgery to look closer is a tough decision

Agreed. There was a video I think I saw on this site with a youg girl who had issues walking and talking and any normal function. They finally diagnosed a perilymph fistula and after repair she was normal. Clearly if this complex vestibular system is damaged it affects you in many ways. And yes we are capable of compensation to some degree depending on how badly we are damaged and if the damage leaves you with a consistent affecr or heals to a degree

Yes I wonder what causes the periodic variance and attacks. I remember the first time I read about menieres it was called incurable and progressive. Something that affects hydrops conditions perhaps. Leaking or making too much fluid. Something that affects the salinity or amount of the fluids. I do think drinking lots of water helps when I’m bad. The diuretic seems to help and I’m told it helps keep fluid levels more consistent. Low salt diet usually prescribed and i do this.

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How many times per day do you aim for to be active and then rest?

How much water do you drink

I slowly worked my up to increase walking distance. At first I couldn’t walk more than 15 min without my symptoms revving up. I walk twice a day for an hour or even bike a bit in addition to doing normal daily activity. I make sure I sit and rest as needed during the day. I don’t feel great after walking and it takes 1/2 hr or so to snap back and then I feel better. Sitting all day is much worse. For me a body in motion tends to remain in motion…

I drink a lot of water

How do you put away the fear of feeling your symptoms and being active versus sitting where it’s much safer? That’s where I am right now :pensive:

Getting off Topic here.