[UmustBKidn]

Howdy folks,

I used to participate regularly on this site. That all changed in December 2018.
I was rather suddenly struck with a rare hearing disorder called Meniere's disease. Article here:

https://en.wikipedia.org/wiki/Ménière's_disease

Overnight I was literally hit with nearly total loss of hearing in my right ear, combined with very loud tinnitus, and random bouts of vertigo. The vertigo is the worst; it literally makes me dizzy and nauseous for hours. Yes, hours.

https://en.wikipedia.org/wiki/Vertigo
https://en.wikipedia.org/wiki/Tinnitus

It's really quite horrible. The tinnitus is equivalent to a 10 KHz tone played at 90 dB into my right ear.

I had just finished building a bottlehead crack amp, which was a big step up from my bravo amps, when this hit me. If I turn it up loud enough, I can almost ignore the noise for a while.

Not looking for sympathy. Though I would dearly love to hear about anyone with a similar condition, who has found relief somehow. So far this seems like a life sentence.

God bless you all.

 

[HeavenlyD]

…

 

[UmustBKidn]

Hey I suffer with this also.
It’s inhibited me from doing Disney, fairground rides, reading as a passenger in a car or any boat trips where slight movement is interpreted in my head differently to what my eyes are seeing.
It started when I was about 10, went to the funfair, went on the spinning teas cups and couldn’t walk for a week with severe sickness and nausea.
I probably get hit with it once every 2 years, last episode about a month ago and spent 3 days in bed, hanging on as the spinning in darkness made me feel like I was in a washing machine and literally crawled to the toilet to throw up.
But....
For me it’s about knowing the issue and avoiding the triggers. I have to pass on the nice boat trips on holiday, no cruises and always sit in the front of a car and it can be managed (in my case).
What I will say is, my ears are always an issue. I’ve always got something going on but I’ve been fine with open back headphones.
My Abyss Diana Phi have been a revelation for me being open back but my Bose QcII 35, B&O H8 and Sony 1000 all cause me issues as there is a pressure build up, I use them for flights only now for noise cancelling.
It’s not a great condition, but we are what we are, and hopefully it will get better for you...

Hello,
Thanks for replying. I'm sorry you were hit with this at 10. I got it on my 60th birthday (nice present, eh?), which has been a couple years now.

You don't mention, but has this affected both ears, or just one?

I've always had car sickness...I wonder if thats related? I can drive a car, but forget being a passenger. Nevermind reading a book or watching anything except scenery. Same for boats - I can drive a boat just fine, but being a passenger will make me very sick.

The vertigo description hits home. Oh good lord, what a horrible feeling. At first, the attacks would last an hour, but that soon became quite random. I made a spreadsheet and tried to capture the history, severity, duration, when & where it happened, what meds I tried, etc. At worst, I was getting attacks every 2 to 4 days. On a scale of 1-10, I only experienced 10's once every month or two, but lots almost daily in the 3-6 range.

When I get a bad attack (a 10), the vertigo lasts for a good day, with lingering effects for days to weeks. Just like the spinning you describe. All I can do is take lots of meclizine and lay in bed with lights off.

The only medicine my doc gives me is Meclizine, which is also sold otc as non-drowsy Dramamine. It helps a bit if you take it regularly and especially before an attack. The prescription drugs seem a bit better than dramamine. Ginger pills also help (herbal stuff from Amazon is cheapest). Herbal concoctions like RingStop don't do much; the pills help a little (they seem to help distract me from the noise), but they are very expensive for the little relief they give.

As to headphones, I haven't noticed much difference between open or closed back cans. The thing that works for me is sheer volume... so, driving my Beyerdynamic DT770's with the Bottlehead Crack at loud volumes allows me to ignore some of the tinnitus and mask it somewhat. My grados are more delicate than the beyers, so they might not tolerate the abuse as well. I usually drive those straight out of my Fiio dac. It works, but it lacks something. Of course, everything I hear is distorted wildly thanks to the hearing loss, so I'm no longer much of a judge of sound quality. Its truly sad.

One big discovery I made after a year was laying on my left side to sleep. Laying on my right side can cause immediate dizziness, sleeping on that side can ruin the next day with an attack. Curiously I can also sleep on my tummy without triggering an attack. Rolling over either direction causes dizziness. My right ear is the bad one in my case. This is entirely subjective info and might not work for everyone, but its something to try.

Well best of luck to you. Would love to hear of any new treatment discoveries. And thanks to head-fi for permitting this ot discussion.

-U.

 

[baskingshark]

Sorry to hear about this condition affecting you folks. I'm not an expert but have a friend with it, and he was advised by his doctor to take a low salt diet, cause sodium causes fluid retention and can make the condition worse due to fluid build up in the inner ear.

Seems there's a paper here also recommending low salt, low alcohol and low caffiene for this condition: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7265917/

Well worth a try I suppose, hope u guys find some way to treat it, and take care!

 

[UmustBKidn]

Sorry to hear about this condition affecting you folks. I'm not an expert but have a friend with it, and he was advised by his doctor to take a low salt diet, cause sodium causes fluid retention and can make the condition worse due to fluid build up in the inner ear.

Seems there's a paper here also recommending low salt, low alcohol and low caffiene for this condition: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7265917/

Well worth a try I suppose, hope u guys find some way to treat it, and take care!

Funny, a doctor recently diagnosed me with Low sodium levels!?! He told me to use some salt in my diet. Go figure.

I don't drink much coffee any more. I quit alcohol a couple months ago. None of these things seems to affect my tinnitus/hearing loss or vertigo.

About all I've learned anything about is the vertigo. Laying only on my left side or tummy when sleeping seems to have the biggest effect on reducing vertigo (which is a lot of help). Meclizine or ginger helps some but only if you catch it early.

 

[Willy 2 Streams]

Sorry to hear about your Meniere's; unfortunately it's not as rare as you think. In Aruvedic terms, it is a very 'pita' disorder, meaning the pita (heat) dosha in you is way too high. That's probably why the ginger helps. Try to find a good accupuncturist or Aruvedic practitioner who can help you balance that excess heat, see if it doesn't help decrease the frequency and severity of the bouts.

 

[UmustBKidn]

Sorry to hear about your Meniere's; unfortunately it's not as rare as you think. In Aruvedic terms, it is a very 'pita' disorder, meaning the pita (heat) dosha in you is way too high. That's probably why the ginger helps. Try to find a good accupuncturist or Aruvedic practitioner who can help you balance that excess heat, see if it doesn't help decrease the frequency and severity of the bouts.

Hi Willy,
Thank you, I haven't tried that yet (though I try a lot of herbal remedies). I will check that out.
Meanwhile, some favorite recent music, and my hi power setup...

 

[UmustBKidn]

Something of an update, for what it's worth...

1) I've determined that sleeping on either my left side or my stomach, prevents the worst of the vertigo. That alone has been a huge help. I do still take meclizine (non-drowzy dramamine) if I feel mild vertigo. But the bouts of #5-#10 ranked attacks have been relieved, for quite a while now (>1 yr).

2) I no longer sleep on my right side for any length of time (a few minutes here and there).

3) As a result, I heavily favor staying on my left side, awake or asleep. This has had another side effect: recently been diagnosed with carpal tunnel in my left arm. On balance, however, I'll trade the carpal tunnel for the vertigo. I can live with carpal tunnel (for now). Vertigo attacks (of #5-#10 scale) put me on my ass for a day, lights out, in bed, taking lots of meclizine. Easy decision.

4) Hearing is getting worse, mostly in terms of what's similar to what you feel going up/down in altitude on an airplane. I ask people to repeat themselves a lot.

5) Getting my first hearing aid (for just the right ear) in a couple weeks. Yes, I believe this marks the official entry to Old Age. Don't think I'll use it with headphones though... I don't need more volume with my cans on

 

[WorksUnit]

But the bouts of #5-#10 ranked attacks have been relieved, for quite a while now (>1 yr).

Good of you to break down your experience, and pleased things are more manageable.

 

[Paul Mohr]

I had vertigo so bad at one point I couldn't walk for weeks. It sucks. And my doctor said in many cases there isn't much you can do for it other than take meds for the nausia. I told him if it didn't go away I would go crazy. He said "Some people do.". Was like thanks that freaking helps lol. I think mine was stress induced, my wife and kids had just left me. It got better but it still comes back now and then but no where as bad. I just get a little dizzy or faint now and then. I also suffer from mild tinnitus. I comes and goes. Every now and then I hear a high pitched tone and it will shift from ear to ear. Nothing that causes pain though. I couldn't imagine having it that bad. I also suffer from ptsd, depression and anxiety. So if I had to guess most of my problems are mental or some kind of chemical brain impalance. The hearing issue might be my own fault though. I didn't exactly take care of my hearing when I was younger. I was a mechanic in the air force, worked in factories and used to shoot a lot. And I was too stupid to use hearing protection most of the time.

I can sympathize with your issue, while mine are slightly different and probably not as bad. And you are right, the vertigo was the worst. And there was no warning. One day I was fine and the next I tried to get out of bed and fell on the floor. I had to crawl to a phone and call my brother. The slightest little movement felt like someone just spun you around voilently. Riding in the car was torture.

I wish you all the luck.

 

[UmustBKidn]

I had vertigo so bad at one point I couldn't walk for weeks. It sucks. And my doctor said in many cases there isn't much you can do for it other than take meds for the nausia. I told him if it didn't go away I would go crazy. He said "Some people do.". Was like thanks that freaking helps lol. I think mine was stress induced, my wife and kids had just left me. It got better but it still comes back now and then but no where as bad. I just get a little dizzy or faint now and then. I also suffer from mild tinnitus. I comes and goes. Every now and then I hear a high pitched tone and it will shift from ear to ear. Nothing that causes pain though. I couldn't imagine having it that bad. I also suffer from ptsd, depression and anxiety. So if I had to guess most of my problems are mental or some kind of chemical brain impalance. The hearing issue might be my own fault though. I didn't exactly take care of my hearing when I was younger. I was a mechanic in the air force, worked in factories and used to shoot a lot. And I was too stupid to use hearing protection most of the time.

I can sympathize with your issue, while mine are slightly different and probably not as bad. And you are right, the vertigo was the worst. And there was no warning. One day I was fine and the next I tried to get out of bed and fell on the floor. I had to crawl to a phone and call my brother. The slightest little movement felt like someone just spun you around voilently. Riding in the car was torture.

I wish you all the luck.

Thank you sir. I appreciate your candor and hearing your story.
I know, most of us take our hearing for granted. Until something goes wrong.

I've never heard of anyone going crazy from vertigo. Get a prescription to Meclizine, 25 MG 3 times a day. That resolves a lot of the random dizziness.
It's the debilitating attacks that are most concerning. But I can say with all confidence, that once you figure out the best position to orient yourself (in my case, the left side), those horrid attacks go away. Seriously. I should take a picture of the Excel spreadsheet I created sometime and post it.
From what I've read, the vertigo is a mechanical issue of the inner ear. So if you can experiment and figure out which physical orientation of your torso alleviates the dizziness, you can prevent the greater portion of events. That is the most valuable bit of all this that I can pass on to everyone.
Once that's done, you're left with tinnitus and hearing loss. For me, the hearing loss fluctuates. I try to induce "popping my ears" by yawning quite a bit, which helps a bit but not permanently.
I also use an herbal concoction called "Ringstop", which helps a little but is rather expensive.
People should also have themselves checked for sleep apnea. That condition can worsen hearing if it's left untreated. I know in my case, if I fall asleep without my mask on, my hearing gets worse, literally overnight.

I wish you all good health and happiness.
-U.