Would you accept that the ear is innervated by the brain. The blood vessel going to the ear can get constricted due to a migraine. Also the trigeminal nerve going to the ear can get irritated due to migraine. Most importantly we don’t understand the role of the brain in the inner ear fluid/pressure homeostasis. Is it fair to say we don’t know for sure what causes MAV, it can be the brain as well. We can wait and see how the research spans out on this.
James I have to add here that I did not allow my extremely debilitating symptoms to stop me from working, taking my dog out, cycling etc, etc until I could do none of those things without needing to use a stick. As you know this was for a period of more than ten years without treatment so if compensation were possible it would have happened surely. Then I was given an anticonvulsant medication to quieten the chaotic activity in my brain and I can function normally. Surely this is more in line with the VM theory? All the compensatory exercises in the world had zero effect on my brain because she was firing erratically. This is what happens with migraine. It is the cause of migraine and of all the symptoms associated with it. Of course the ears are going to be affected as well, they are connected to the brain. So sort out the brain, you sort out VM.
Firstly, let me say it’s fantastic to see you doing so well!
This is completely compatible with my hypothesis, Margaret, as per my post above:
Exactly the same as my experience - VRT was no help to me, just meds, time and normal activity sorted me out, and again, fits with my theory.
My assumption is that people with VM have had significant changes in their ears and this will be very obvious in some as there will be signs like fluctuating tinnitus and possibly even some hearing loss (very clear that tinnitus is experienced by a lot of sufferers according to my poll) I believe it is also possible to have change just to the vestibular part and you will not pick this up with hearing tests. I believe the kind of change in the ear we are talking about it is unstable and particularly hard to compensate for. In other words the characteristics of the sense are changing rapidly over time. This is something the brain has a particularly hard time coping with. Too much sensory noise and too much fluctuation in the ‘response’ of the ear due to instability and the brain will have a tendency to go into migraine state (see the paper I posted above) and will find it hard to tune and adapt. The change in the ears will have caused decompensation and this is why you are feeling imbalanced and dizzy all the time. Intuitively there are only two ways to solve this: resolve the issue with the ear if possible, if not assist the brain to compensate.
Some of the VM drugs may be addressing the underlying issue with the ear (e.g. there is some evidence from Hain that Verapamil users have experienced improved hearing - how could this be possible if migraine was causing irreparable damage? On the contrary this suggests the issue is benign and reversible).
Most of the drugs are probably assisting compensation to happen, partially by blocking the migraines, because as I said, without the drugs the brain is constantly going into migraine state for some and this is blocking adaption. Perhaps the drugs also have some positive action on the compensation process.
This still doesn’t change the fact that I believe the root cause is closer to the ear. If you solve most of the problem by addressing the neurological end of the issue, fine. Unfortunately, as with my case, that doesn’t bring the hearing back to the way it was but at least you get your life back and ultimately get rid of all the debilitating neurological symptoms, the imbalance and the dizziness, once re-compensation has taken place.
There may be something about the condition that means that decompensation will occur if you come off the drugs because the brain no longer has the support of the calming meds. For others, like myself, coming off the drugs has been possible. In my case I suspect this is in large part because my ear trouble has calmed somewhat and the brain has been able to ‘catch up’ and maintain compensation.
For sure, it is very disappointing that science has not yet fully understood homeostasis and as I have stated disturbance of homeostasis could be from a variety of reasons, injury being one, but could be to do with hormonal or electrolyte imbalances - that latter are clearly central but could be to do with your metabolism, your kidney function etc. - I don’t think you’d consider those things, whilst central, to be to do with ‘migraine’. But I agree with you, there must be a ‘central’ element to homeostasis and btw, I think that can cause problems with recovery when you get a unilateral injury (which has in phases caused me bilateral ear symptoms)
Central to my hypothesis is that disturbance to the homeostasis of the ear IS closer to the root cause of VM/MAV (and of course, SEH which has identical symptoms) and that migraine is secondary to/follows on from this issue. What is causing the homeostasis to go awry is clearly the issue that needs to be addressed! As per above I think this is a chain of events.
Further, as we know Menieres is ONE condition in which homeostasis is disturbed, but initially very episodically. But this is at least a good example of a condition in which migraine also occurs and I suspect for the exact same reasons.
I propose that in MAV/VM there is a chronic disturbance in homeostasis (for whatever reason) from the get go. Most people with this condition get tinnitus and that’s a clear sign for me. Some are even less fortunate and have hearing loss. Hearing loss is a huge red flag that something is not right with the ear. If the audiological symptoms are significant and mostly unilateral that suggests a peripheral issue.
In my case (SEH) this got progressively worse and I didn’t have an actual migraine until about 6 months into my dizziness. To me it was very clear that whilst neurological decompensation occurred initially, it was a while before the migraines hit. I conclude therefore that this disturbance both limits compensation AND can cause migraines which presumably further mess up the neurological end (though in my view could be completely benign as there is no proof migraine causes degenerative vascular processes - the changes to my hearing certainly occurred well before I started getting migraines and though my hearing got worse for a while, its hard to say if that wasn’t directly as a result of worsening fluid balance in my ear (suspect it was)).
The good news is I believe that as per our friend at hydrops.info, much of this rubbish is REVERSIBLE and not just the neurological stuff.