My vestibular physio’s take on the rehab is that if the damage has been done on one ear (as in my case), there is no healing that. The job is in compensation with the good ear.
The rehab’s role is teaching the eyes/brain to take vestibular information from the non-damaged inner ear. Resetting the VOR to the good side, which in turn would remove the nystagmus/vertigo over time.
The drugs may dampen the effect from the bad ear, but if the damage is done, I think compensation is the way forward (through VRT or whatever means). Maybe the drugs assist in allowing a better environment for compensation. I don’t know.
My neurologist prescribed VRT and meds in the same consultation, so there must be some link. Like the VRT is helping me compensate from the inner ear disfunction, and the meds are for the migraine. But if they were to be pointless combined, I’m sure he wouldn’t have prescribed them together.
Found this on Hain’s website too:
“Anticholinergic medications are commonly used to treat vertigo because they are vestibular suppressants. Oddly enough, breaking the usual rule that sedatives block compensation, centrally acting anticholinergics produce a reversible overcompensation if administered after compensation has been attained to a vestibular imbalance (Zee 1988).”
So that appears to back up your theory that Ami would not assist in compensation, but part on the reversible overcompensation confuses me. That needs more information.
Yes that’s what they say. Thing is I don’t believe that is true. If ‘the damage was done’ and the situation was now static then your compensation would occur very fast. The brain is very good at adapting. The issue and why I believe we get migraines is the ear is not stable enough for the brain to retrain. However I believe most people eventually recover spontaneously because the damage IS resolved over time and the ear DOES stabilise. I believe for some people this can take years though.
But of course what doesn’t hurt you IS worth trying!
Very true. Maybe if one had a case of labs (like mine), that damage remains, but compensation happens quite quickly (utilising the good ear). A lot of people make very fast recoveries with labs.
I had severe vertigo for a day or 2, then it subsided to a general disequilibrium and hearing loss for the next 9 years until the migraine symptoms appeared, and aggravated my balance again. So it appears that I still have that damage, although never totally compensated 100%
I probably need to calm things down with meds THEN try the VRT again if or when I can come off them. (Assuming I would still need further compensation)
Interesting, I like to believe the inner ear can heal itself too, but I guess my Neuro is very scientific, if he doesn’t have the facts he won’t discuss it, so compensation is all he mentioned.
What is ‘labs’ though?
I’m sorry to say but I have ZERO confidence in these diagnoses because ENT medicine lacks the knowledge and tools to accurately diagnose. It’s one of the least developed avenues of medicine. They can’t even tell us for certain what causes and what happens during a vertigo attack for goodness sake!!
Imho ‘labs’ could be anything that resolves within a few weeks but had a symptom collection that fits the definition. Thing is there are probably a miriad of issues that can cause vertigo and tinnitus. Or maybe there is a common cause yet undiscovered or yet to be settled upon. Short of cutting you open it’s impossible to tell if you have viral damage. ‘labs’ is generally considered an outdated diagnosis because most of the top guys know that it’s very hard to know for sure so instead they say ‘acute peripheral vestibulopathy’. If it’s chronic I doubt it will be a virus because viral attacks are acute not chronic. I’ve heard doctors say that such viral attacks so deep in the body are as unlikely as being hit by lightning.
The vestibular testing, plus labyrinthine enhancement on the MRI, hearing loss and tinnitus (in HIS opinion) all lead to some sort of damage, and it still appears that way if it is inflamed on an MRI.
I understand that its outdated for most MAV sufferers because their vestibular testing and MRIs show normal, but mine was quite bad, so he has assumed its “Viral uncompensated labyrinthitis”. Even though none of the viruses tested showed positive
Inflammation of the labyrinth was noted on the radiologists report?
I looked at my MRI and the resolution was laughable. How they can work out what’s going on from the lack of detail amazes me. I’m sure it’s useful to rule out larger tumours but not much else. The features of the labyrinth are TINY.
I’m not sure what was on the report, but in the images he showed me, it was white on my left (bad) ear, and a dark grey on my right (normal) ear
Interesting!
Well inflammation might not have a viral cause. Could be a physical injury or due to some other infection. Either of those things may be acute but require a long time to settle. Did he rule out otitis media?
I believe the body is very good at taking care of itself. Your and my ear will get better but it’s a long road and it’s a very sensitive part of the body. Be optimistic because you have grounds to be!
Thanks for the positive words! Sometimes I forget that the body can do so well. I just need to give it the right circumstance to heal (meds) - all the meds I’ve tried so far have only made things worse.
He never mentioned Otitis media, but he did some painful pressure testing of my ear drum.
A doctor at the hospital had actually diagnosed me with this, she was going to start me on antihistamines, but noticed I was on a pro-histamine (Betahistine/serc) at the time, so coming off that was the priority.
I’m off that now, but my GP didn’t want to start an anti-histamine while I’m on all these other drugs. Maybe I should try before the Ami - but then again, I think Ami itself acts as an antihistamine too. Maybe that will help with my sinus pressure and eustachian tube popping.
Ah so many problems, so many potential issues, so many drugs.
We will all get there!
Yes. And to give you hope I am much better than a year ago. The biggest clue to my condition is that I get fluid in my bad ear every morning and a sensation of ‘bubbling’ as I get up. I’ve concluded this must be fluid in my middle ear which collects at night and then drains when I right myself. This sensation has decreased month on month and recently almost disappeared. That is why I’m convinced I have a healing fistula. (I’ve been diagnosed with MAV and separately a fistula)
Good luck with your meds hunt!
The bubbling sounds like it could be a healing fistula. Best of luck to you too!
Thank you very much. Let us know how you get on with your med trials!
HI, how are you doing today? What has helped you get thru this the most?
Belief (that you will get better) and Amitriptyline have helped me the most together with trying to live as normal life as possible. I also followed the post op guidelines on how to deal with a healing fistula. I’ve not had the surgery but found that avoiding the aggravating activity listed may have helped it heal (but who’s to really know ). It’s not completely healed yet but oh so much better. Have a look at my PLF thread.
http://www.mvertigo.org/t/ive-had-it-guys-im-going-to-look-into-plf-surgery/13792?u=turnitaround