Is Burnout a Myth?

Yes and no.

Not a myth in that over time its a well documented fact that like hearing cells vestibular cells are damaged. As vestibular cells are damaged vestibular problems normally diminish.

Is a myth that total demise or burnout happens all the time. My doc says he has seen true vestibular wipeout by clinical criteria very few times with MM. But more often with tumors or toxic causes. (gent) But for sure it gets dumbed down....sometime significantly....I guess that is the burnout some speak of.

Interesting that your question also explains why some vitamin "regimens" you see on this site say they work. Just wait long enough with a placebo and you get some degree of burn out and feel better. Watch out....the vitamin people will pounce on my comment. Usually happens. Ha ha ha. Be wary if they do however.

Good question. Thank you for asking. Maybe our posts will help someone.

Peace

 

No, "we" won't.

Those who have found chronic (continuing) relief from well-selected vitamins and supplements ("vitamins," alone, offer little or no relief) will continue with their good outcomes.

Those certain that vitamins, minerals, and supplements can only be phony nostrums of no legitimate utility universally reject any evidence to the contrary. Those with such perspectives are welcome to restrain Meniere's therapies only to those in medical textbooks.

It's not a matter (at least for some) of useful discussion. The case is closed.

--John of Ohio

 

Teesdale, I'm similar to you except I am Bilateral and have had MM for 33 of my 53 years. The "burnout" is when the balance nerves are finally and completely destroyed. There is relief of sorts. Instead of spinning I now just Stay Off Balance. No change in tinnitus and the pressure varies daily. For me, my hearing had been stable for the last 15 years until 6 months ago. Suddenly the hearing in my right ear plummeted out and didn't return. I'm now adjusting to hearing aids. Decline of hearing is what's left from now on (along with the normal issues listed above). Best of luck and it sounds like you've got a great doctor--I'd stay with him‼️

 

I think if i had already lost 99% of my balance, then i'd just get a laby to clean it out. There doesn't appear to be much "off balance" feeling reported by laby proponents on this forum.

 

I've had MM since May '15. After many spinning attacks, I had shunt surgery. Which lessened frequency of attacks. But I still had them. Then after my first gentamicin injection, I'd had the spin attacks even less frequently. I've had 3 gent injections now. The spinning attacks are infrequent, about 1 every 4 months. BUT I'm still dizzy every day almost. So, to answer your question, it's very hard to say about burn out. Was it the shunt that helped? Surely it did with the major attacks. The injections? Time? Natural damage from MM. Intentional damage from injections? Probably a combination of all the above have lessened my attacks.

But again, the daily dizziness remains at the level and frequency it always has...so no burn out on that issue.

 

teesdale,

I don't think that burnout is a myth, but I don't think it's a guarantee, either. I belive that there are many causes for our symptoms. It seems that there are so many variables so it's impossible to know if or why the vertigo can burn out.

I was diagnosed in 1997. i had horrendous vertigo , lasting for 12 hours or more always with vomiting. The attacks were sporadic and not predictable. I tried various remedies with no success. I had 2 different remissions from the vertigo , both lasting 3 years. Then the vertigo came back with avengeance in 2006 with the exception that even tho the attacks lasted as long and were more frequent, they were less violent.

During this time I was advised to do activities that required me to challenge my balance such as walking , tennis, biking , skating on the days when I was able to do that. I even tried the playground balance beams when fooling around with the grandsons.

Eventually the vertigo has petered out. I haven't had a really bad episode of vertigo since 2008. My balance is pretty good and I do not have daily dizziness. Btw, I believe that vertigo and dizziness are two very different things. I had a tiny vertigo blip a couple of months ago which scared the heck out of me. I thought my remission was over. Now I think it may have been unrelated to Menieres.

I think it's possible for MM to burn out in regards to vertigo. I am reconciled that I will have the 24/7 tinnitus and regular aural fullness. The little hearing I have in that ear is distorted , therefore useless.

I just wanted you to know that it is possible to burnout the vertigo and not have balance /dizzy issues. I hope you do the VRT as I believe it will be beneficial to you.

Hang in there.

 

I really feel for your story Melc. That's so tough to hear that you had MM that long. And man, what a sad letdown it must have been when it came back after you probably thought you got off Scott free twice for 3 years apiece. I relate to a lot of what you said. Though thank goodness I've "only" had it since 2015, and have been undergoing medical procedures to lessen the symptoms.

What medical procedures have you had.

Or if you've already posted your story, please link me to it.

thanks

 

Thanks for your comments, Pupper.

I know that many sufferers have had it worse than I. I consider myself fortunate that I eventually came out of this on the right end of it. I feel badly for those who for what ever reason don't get that relief. It is so frustrating

I didn't have any procedures. I came close to trying the gentamicin but chickened out. I tried the lo so, no caffeine, no alcohol, no dairy, no gluten, Serc.

Now I do all of that in moderation and feel really well vertigo wise. I'm pretty confident that I'm in burnout from the vertigo because I'm now doing absolutely nothing to try to stop the vertigo ( except avoid MSG) but. I did that when I was still experiencing vertigo.

As I said, so many variables, so confusing.

I share my story so that others will know that even tho it was hell, it can get better.

 

Merc, i'm glad to hear that you're finding relief!

 

Thank you, Scott. I wish it for all of us, no matter what the method.
Stay strong everyone.

 

Interesting Melc, that your experience does seem to give credence (so far) to the burn-out idea. Strictly for knowledge of the disease, it's good you didn't do any medical procedures. In that, you're an unadulterated case of burn-out.

I say that with a grain of salt of course. MM being so frustratingly random, for both patients and researchers.

It's strange to me that people like yourself, who had severe vertigo (spinning) attacks it for years, never decided to have medical procedures. What, are you some sort of masochist? Kidding. But really...

 

Scott Tom... you make a really good point about once its 99%. My problem has been knowing when its 99%. Since although there is objective testing....its not objectively quantified. "Almost dead" is the best I have been able to get my doc to say, but he said he could not put a % on it. Almost dead reminds me of a Billy Crystal scene in the movie "A Princess Bride" its hilarious. When eyes are closed or in the dark I am totally off balance. So I know its my eyes and touch that keep me upright ....mostly. But they still get a response from vibration etc. I know if I still get the spins its not totally dead....but rather just messed up....ear is still talking to my brain. When its not sending those bad signals to my brain....i am thinking it still may be helping up stay upright at least a little. So its a hard choice. The good news is that the vertigo it not as violent as in the past. The laby is offered but I am going to wait a little longer for the total burnout to come true. Once the spins totally stop I know its closer or maybe totally dead. Good luck to all. Good discussion.

 

Hi teesdale,

Burnout isn't a myth. I have experienced it twice. I developed MM in my left ear in the early 70's. By the mid 70's I experienced burnout with no vertigo and severe hearing loss in that ear. I was fine until the early 80's then started having symptoms in my right ear (low frequency hearing loss, but no vertigo). I was diagnosed with hydrops. That progressed to full blown MM over several years. In the mid 80's I developed severe vertigo. I underwent a right middle ear exploration and they found three peri-lymphatic fistulas and patched them. I did well and was vertigo free for about three months then the severe vertigo returned. I underwent a second right middle ear exploration and they found that one of the patches had blown. They re-patched it and I have been vertigo free ever since. Even though that stopped the vertigo, it didn't stop the hearing loss. I'm now the proud owner of two cochlear implants and I now have low normal hearing. Even though I've lost all balance function in my ears, I'm fortunate in that my brainstem has taken over for balance. I do very well with balance except in total darkness.

Best regards,

Jim

 

I'm similar to you Teesdale, in that the severe spinning attacks are much less frequent (due to a mix of shunt surgery, gentamicin injections, and time) but my daily dizziness hasn't changed much since the beginning. So I've decided to have a VNS.

Come. Won't you join me in this decision? Don't fear the reaper.

Seriously though. Make your own decision. But it would be cool if we went through VNS together.