I am having unusual issues with my ears. This has been going on for nearly 15 years and without a clear answer from doctors. Very frustrating. When it started it started with 'attacks' of me hearing music all out of tune like a bad piano. The attacks would effect both ears at the same time and during attacks I would lose the ability to hear low frequency sounds. I have had vertigo too but those attacks are very rare. I tried looking high and low for Menieres symptoms. However from what I understand is that even in bilateral Meneries the 'attacks' should only happen in one ear at a time. Furthermore the hearing loss part of it is described as gradual. Then I cant find anybody complaining of hearing music all messed up and peoples voices sounding like they are speaking through long plastic pipes. For me my bad ear went streight out losing about half its hearing when this started and never recovered. At the same timr my good ear only had a slight hearing loss. The main symptom is hearing the wrong pitch. So much so that hearing any kind of music becomes absolutely unbearable. So my question is am I correct to think that this is something different from Menieres? If so, what else can cause low frequency hearing loss but but yet have the attacks effect both ears at the same exact time each and every time I have one of these attacks. Also I notice popping sounds in my bad ear every now and then. Doctors say my ears look normal so its not a normal ear infection like you get with the flu. Anything that can set me on the right path to figure out what is happening to me will be greatly appreciated. Or if you have the going out of tune issue, please enlighten me. Thank you so much.
Look up the term Hyperacusis. I have suffered from this in my bad ear to the point that I can't sit in church during worship sessions due to the pain. When in a flare, it appears to affect hearing on both sides, but i have come to believe the distortion on the bad side and the associated noise levels overruns the hearing of the good ear. During these flares, not only is there pain associated with the hypearacusis, but severe distortion of all sound. Now that my left ear is pretty much gone, it still distorts sound. some days worse than others. The voice intelligibility has gone to near zero so I expect distorted music as well.
I also hear music out of tune which is worse at times. It is in only one ear. Also the distortion you speak about. It must be terrible to have that in both ears. Have you seen a meneires specialist to get a diagnosis?
Have had all symptoms you describe. The voices sounding like they are coming out of tubes is very accurate and hard to get people to understand. A laby in my right ear (completely deaf in that ear now) and antivirals for my left ear are the only things that have helped. Best of luck finding relief. --Kevin
I have cochlear hydrops and have had most of these symptoms. The only difference is i was already deaf in one ear so i cannot say if symptoms would have been present in both ears simultaneously. Antivirals made a great difference in the distortion, all facets of it. Allergy treatment helped too but for the distortion, the antivirals were the biggest help. You have my sympathy. No one can see your symptoms and many do not show up on tests though they are devastating. Post antiviral and allergy treatment, i am almost symptom free. Try it acyclovir, valtrex or famvir if you can. Good luck, dont give up.
I have the exact same symptoms. Bilateral meniere's disease with diplacusis. Look up diplacusis if you haven't. I am a film and television composer and it ended my 30 year career. I am redfining my life. Can't go to concerts, watch tv, see movies. I was diagnosed with meniere's in 2014, one ear only, and was fine (with the ocassional declarative vertigo incidents and fluctuating hearing loss in one ear only) until October of 2018, when overnight it became bilateral and I was almost completely deaf in both ears. And then the pitch shiftin kicked in. The ability to hear or play music is mostly gone, but a few times it has abated and I was OK. I have given up alcohol, am on a dieuretic, I stick to the JOH vitamin regime, and drink tons of water, work out 3-5 days a week, have been on oral predisone as well as shots into both eardrums. Nothing seems to help. I also meditate every day. Please read the post I put up this morning about a promising new drug. In this forum. I look at this only one way: it is a blessing. The blessing of the affliction. I have to completely reinvent my life. It makes me find strength. I am not the same person afer the debilitating vertigo episodes, which are like being waterboarded for 3-5 hours. I have read that after two years of rigorous lifestyle change you can reduce the symptoms and the diplacusis can go away. This new drug, SPI-1005 can change all of that for us.
Addendum: I have also done two courses, for months, of the antiviral drug Acyclovir. I thought it might be helping, but it didn't stick.
most people find antiviral improvement to be two steps forward and one back. It is not an on off switch. Look for the over all trend. If things, on balance are better each month, keep going.
Oh yes. I’ve had Ménières for several years. In the last two years it has become bilateral and music and voices have started to distort to the point of incomprehensibility. One sufferer, a psychiatrist/pianist in Scotland, has labled this “cochlear amusica,” the inability to hear pitches originating, not in the brain, but in the cochlea. If I play middle C on the piano, and then D a step above it, as a conductor and pianist with a formerly good ear, I hear internally in my mind exactly what the D should sound like, but my brain “hears” F-sharp, or B-flat, or some other pitch. The note goes into my ear as a D, but my cochlea transposes it to some other pitch. Note=pitch=frequency. My cochlia is scrambling the frequencies. No wonder hearing aids don’t help with comprehension. It’s not a question of volume of those pitches, which is what hearing tests and hearing aids are all about. My hearing is scrambling the frequencies. In other words, I’m hearing all the wrong notes, or pitches, or frequencies. No wonder listening to the spoken word, or to music, produces an agonizing cacophony in my brain! No wonder I can’t stand listening to music, even background music in a movie or tv drama. I have been very fortunate in that the worst ( for me) pitch-distorting aspect of this rotten disease didn’t hit until I was in my late seventies. Thus it didn’t stop my career. I have profound empathy for those musicians who experience it at an earlier age.
Thanks for posting your experience so specifically. I'm not a musician, but have been a classical music appreciator, and for years have not been able to enjoy it because of the "agonizing cacophony" you describe.