And the Band Played on — Musical Hallucinations / Musical Ear Syndrome

[Pennant]

Hello,

I am new here! And struggling so much! I have had tinnitus since a childhood infection when I was 11 but over the last ten years my hearing has gotten worse, most probably due to loud noise. Over the last ten years my symptoms have worsened and eventually I found it was getting harder to discern some speech. Added to my usual tinnitus sounds I began to hear a loud piercing drill. That was three years ago.

Eventually the drill stopped only to be replaced by endless music. Yes! I had developed musical ear syndrome. Continuous, unbearable musical hallucinations. I cannot drown out the music with other sounds because my musical hallucinations become louder every time I try. It is as if my musical hallucinations are competing with the outside world for my attention! I am in pain much of the time as well. Concentration on anything is hard, and despite this I am naturally a happy chap : ) Always lively and creative. I don't get down.

However, after enduring this for more than two years the musical hallucinations are worse than ever now. It is so horrible to listen to (you'd think my brain would choose better instrumentation!) I have been so very tolerant, accepting that this is me from now on.

But unfortunately I have hit a massive wall. I cannot imagine my life with these musical hallucinations any more. It is simply unbearable and I don't know what to do or where to turn. Anyway, that's me!

 

[Peter61]

Hang in there bro, you're not alone. All you have to do is wait for a cure, and they're working on it round the clock (https://investors.frequencytx.com/n...eutics-shares-clinical-data-exploratory-study). Might take a couple more years but help is on its way, so just be patient and don't give up.

 

[Bill Bauer]

Hang in there bro, you're not alone. All you have to do is wait for a cure, and they're working on it round the clock (https://investors.frequencytx.com/n...eutics-shares-clinical-data-exploratory-study). Might take a couple more years but help is on its way, so just be patient and don't give up.

Current Promising Treatments:

Regeneration Therapies:

Cochlear degradation has a strong correlation with tinnitus, therefore, regenerating these structures should benefit tinnitus patients.

Frequency Therapeutics - FX-322 (Phase 2a): Uses 2 molecules which, when injected in the ear, partially reprogram support cells into creating hair cells, while not depleting support cells. When created, hair and support cells release NT3/BDNF to attract neurons, which make the synapse components to communicate. They also added a tinnitus experimental arm and are doing a podcast with tinnitus talk.

Audion Therapeutics - LY3056480 (Phase 2): Uses a molecule which, when injected in the ear, causes support cells to trans-differentiate into hair cells. This does deplete support cells, so multiple uses will have diminishing efficiency. Results are said to come out at the end of April.

Hough Ear Institute - siRNA (Preclinical): Uses siRNA (silencing RNA) which, when injected in the ear, causes support cells trans-differentiate into hair cells. This does deplete support cells, so multiple uses will have diminishing efficiency. In animal testing, hair cells regenerated the synapse components to communicate.

Pipeline Therapeutics - PIPE-505 (Going to Phase 1): Uses gamma secretase inhibitor which, when injected in the ear, causes support cells to trans-differentiate in synapses and hair cells. This does deplete support cells, so multiple uses will have diminishing efficiency. Treatment for tinnitus was shown in their patent.

Hough Ear Institute - NHPN-1010 (Going to Phase 2): Uses a antioxidant (HPN-07) and molecule (NAC) which, when swallowed in pill form, regenerates hair cell synapses in chronic hearing loss models. Also has shown efficiency in animal tinnitus models.

Otomony - OTO-413 (Phase 1): Uses a protein (BDNF) which, when injected in the ear, causes regeneration of synapses. Hidden hearing loss is the loss of synapses connected to hair cells, thus, regenerating synapses can treat this, also with possibly helping tinnitus.

Neuromodulation Therapies:

Neuromadulation has shown efficiency in reducing or eliminating tinnitus by reducing hyperactivity in the area of the brain associated with tinnitus.

University of Michigan - Depending on which has the most effect on your tinnitus, they places stimulation around your head, jaw, and neck. This along with sound timing has shown a 12db tinnitus decrease in their testing.

University of Minnesota - Uses targeted timing based on your tinnitus/EEG to stimulate areas of your neck/head/jaw along with customized treatment for sound timing. Would be the most effective and has cured @kelpiemsp of his tinnitus.

Lenire - Stimulate the tongue along with sound timing has had some positive effects on people tinnitus.

Ion Channel Therapies:

Prof. Thanos Tzounopoulos - RL-81 (Preclinical): A drug based off Trobalt (Retigabine), which has shown positive effects on tinnitus, although having severe side effects. RL-81 aims to reduce side effects drastically by being more targeted, while also having a 15x potency in the targeted area, potentially reducing tinnitus.

There are more treatments coming as well but these are the most popular right now, so don't give up hope! All are planned to release within the next 5-10 years or less.

 

[hans799]

over the last ten years my hearing has gotten worse, most probably due to loud noise

Are you still being exposed to loud noise? If so, you should stop immediately. Cut out concerts, power tools, loud headphones, etc. Invest in quality earplugs and earmuffs. Hearing damage is cumulative and your ears are already pretty shot. If you're still around loud noise, you're doing yourself a grave disservice and not only are you blocking your own healing, you're making your condition actively worse.

 

[Pennant]

The loud noise was ten years ago, I have avoided it before then and since then. I have always sought to look after my hearing but there was a brief time ten years ago where I should have been more careful. I now live with the consequences of this. I have other hearing issues because of an ear infection and I am due to have an operation later this year - so there's lots happening!

 

[Pennant]

Hang in there bro, you're not alone. All you have to do is wait for a cure, and they're working on it round the clock (https://investors.frequencytx.com/n...eutics-shares-clinical-data-exploratory-study). Might take a couple more years but help is on its way, so just be patient and don't give up.

I am certainly hopeful that treatments and cures may come about. And I am encouraged by the link you kindly sent me.

 

[GBB]

I have this too - if I listen to music I'll continue to hear something vaguely similar for a bit, like music coming from another room, although right now mine is not constant.

 

[xyz]

I have this too - if I listen to music I'll continue to hear something vaguely similar for a bit, like music coming from another room, although right now mine is not constant.

This sounds more like Palinacousis. Seems like some with hyperacusis have it.

 

[GBB]

This sounds more like Palinacousis. Seems like some with hyperacusis have it.

My assumption is the brain is receiving a damaged signal from the ears and tries to do contextual interpretation - if I listen to birds I'll hear something like birds, for example. It lasted about 30 minutes for me.

 

[xyz]

My assumption is the brain is receiving a damaged signal from the ears and tries to do contextual interpretation - if I listen to birds I'll hear something like birds, for example. It lasted about 30 minutes for me.

I would like to know what must have been damaged in our ears / brain to generate this strange sensation. I did a bit of research on this last year and some papers said "most always found some lesion on the temporal lobe". So I did MRI as I was scared of brain tumor, but it showed up nothing just increased tinnitus + hyperacusis.

 

[in_LA]

I have this too - if I listen to music I'll continue to hear something vaguely similar for a bit, like music coming from another room, although right now mine is not constant.

Do you still have that issue?

 

[GBB]

Do you still have that issue?

No, thankfully this went away!

 

[in_LA]

No, thankfully this went away!

Did it happen to you after an ear infection, or maybe a long loud flight? How long did you have it for?

This is very similar to my situation. Mine is not constant either. What triggers it, is loudness, like if I go to a fair, it can get pretty loud at 70 dB and when I get home, I swear I hear some chatter but mostly music that sounds similar to what was playing at the fair. It winds down after a few hours, or if I go to sleep, but the ear feels like it can do it again if I don't take a break from loudness or even catchy beats. Also fans and the A/C can sometimes create faint music or chatter, but it's not always the case.

I'm so confused. I'm sure I have some undiagnosed hearing loss, but it's far from profound, and I'm 42 so it's unlikely for it to be MES (Musical Ear Syndrome). When I do experience these bouts of audio hallucinations, it usually sounds like it's happening outside or another room.

Sometimes I swear I hear what seems to be a car outside playing loud music with a distorted subwoofer, but you just hear the reverberations and the music is unintelligible.

Sorry for the questions and tangent, I'm just desperately seeking answers because I won't see my ENT for another 2 weeks.

 

[GBB]

Did it happen to you after an ear infection, or maybe a long loud flight? How long did you have it for?

This is very similar to my situation. Mine is not constant either. What triggers it, is loudness, like if I go to a fair, it can get pretty loud at 70 dB and when I get home, I swear I hear some chatter but mostly music that sounds similar to what was playing at the fair. It winds down after a few hours, or if I go to sleep, but the ear feels like it can do it again if I don't take a break from loudness or even catchy beats. Also fans and the A/C can sometimes create faint music or chatter, but it's not always the case.

I'm so confused. I'm sure I have some undiagnosed hearing loss, but it's far from profound, and I'm 42 so it's unlikely for it to be MES (Musical Ear Syndrome). When I do experience these bouts of audio hallucinations, it usually sounds like it's happening outside or another room.

Sometimes I swear I hear what seems to be a car outside playing loud music with a distorted subwoofer, but you just hear the reverberations and the music is unintelligible.

Sorry for the questions and tangent, I'm just desperately seeking answers because I won't see my ENT for another 2 weeks.

Happy to provide information. My tinnitus started while taking a nootropic known to induce neuroplasticity, Lion's Mane, while in a two week period I had a very loud/painful ear cleaning with a vacuum device from an ENT, and a train horn went off very close to me.

The real audio hallucinations went away after a few months, but I still get my tinnitus ramped up in reaction to certain kinds of noise. For example, this summer when we started running the A/C 24/7, it aggravated my tinnitus and made it much more intrusive - I mention this because if tinnitus gets louder due to sound, that sort of skirts the line of hallucination for me depending on what you think the nature of tinnitus is. But to be clear, I haven't heard phantom violins or w/e for like 18 months. Same with hearing church bells in the shower, which also happened to me. That's gone.

 

[in_LA]

Happy to provide information. My tinnitus started while taking a nootropic known to induce neuroplasticity, Lion's Mane, while in a two week period I had a very loud/painful ear cleaning with a vacuum device from an ENT, and a train horn went off very close to me.

The real audio hallucinations went away after a few months, but I still get my tinnitus ramped up in reaction to certain kinds of noise. For example, this summer when we started running the A/C 24/7, it aggravated my tinnitus and made it much more intrusive - I mention this because if tinnitus gets louder due to sound, that sort of skirts the line of hallucination for me depending on what you think the nature of tinnitus is. But to be clear, I haven't heard phantom violins or w/e for like 18 months. Same with hearing church bells in the shower, which also happened to me. That's gone.

Thanks for these answers, they're immensely valuable.

More questions.

What was your trigger? With me, if I'm exposed to a loud environment, it feels like it stays with me, sometimes it has a direction but mostly doesn't. Same with music, I was just listening to 70s music at work because that's what they were blasting, and sure enough music that vaguely resembles 70s music stayed with me for a few hours. Chewing gum did help somewhat. It feels like this is more of a crazier form of an ear worm, mine can sometimes last til the next day but will be fainter, so it seems like loudness and catchiness is key here, for all I know maybe I didn't fully clear my infection.

I've never really heard specific instruments, the music seems blurred together in a way. Never heard church bells.

Do you think your tinnitus will slowly go back to how you used to perceive certain sounds?

I've had that before and it remedied itself, but it took like 7 months for certain loud sounds to stop making my tinnitus more intrusive. Hopefully all of this is a stubborn ear infection. I'm just clueless, silence does not create music for me as far as I've noticed, and believe me, I check often, so I don't think I have musical tinnitus. It feels like an intense ear worm or something like it.