I've Always Had Tinnitus! COVID-19 Quarantine Just Made It Real for Me. I'm In for the Long Haul.

[jdrumstickz]

Hi there. My name's Jonathan and I'm soon turning 30.

Growing up, I was a drummer! Lots of loud sounds, and zero ear protection for years. I still play music to this day, just no longer on the drums. I think at some point as a kid, my tinnitus came about. I just never knew it was there.

Fast forward to 2020, and I live in my own place with a stable job. Like everyone else, I'm quarantined at home and I'm grateful that I have a job that lets me work from home as well. As such, my pace of life has slowed down and it definitely hasn't been as noisy (my job usually requires a lot of face-to-face interaction.) Being stuck at home is.... quieter.

One night, I realized that I've had tinnitus this whole time. I turned off the new TV that I bought about a year ago, and I realized that the 12hz high pitched sound wasn't coming from the TV. It then hit me. This whole time... my whole adult life... the 12hz high pitch sound was my tinnitus. I think I always had that confusion because I grew up in the 90s around those old CRT tube TVs with the high pitch sound.

I use a massive 60 inch TV at my usual workplace, and it's always been on. I had assumed the 12hz high pitch sound came from there. When I'm at home, my TV has always been on (I rarely turn it off because my Chromecast is attached to it) so I assumed the high pitch sound came from there. For years.. I thought my tinnitus was coming from all the screens I'm surrounded by. Also, I didn't notice it while I was outside because of ambient noise.

Well now I'm paying a lot more attention to the tinnitus, and I think it's here to stay. So I'm here to say hello, and I'm in it for the long haul. I have an appointment with a therapist on Monday who is willing to help me get started on CBT/ACT, which I know is meant to help with my current distress with the situation (quarantine isolation isn't helping.)

Until then, I look forward to standing in solidarity with y'all...

P.S. Susan Shore is now my beacon of hope. Crossing my fingers to be tinnitus free by the age of 40? I think 10 years is generous enough. If you haven't guessed, I've gone through the "scour the internet" phase.

 

[Lucifer]

There's also clinical trials such as Frequency Therapeutics and Audion Therapeutics/REGAIN. FX-322 is currently in Phase 2a which will have results released by end of September this year and REGAIN has finish Phase 2 will be publishing results end of this month.

These drugs have a really good chance at getting rid of our tinnitus. There was an anecdote in Audion Therapeutics/REGAIN thread that someone was able to go back to his band and tour again since their tinnitus and hyperacusis reduced.

Here are the two threads about the clinical trials for both of these companies:

https://www.tinnitustalk.com/threads/frequency-therapeutics-—-hearing-loss-regeneration.18889/

https://www.tinnitustalk.com/threads/audion-therapeutics-trial.21830/

Since you are a drummer do you also have hyperacusis as well?

 

[Bill Bauer]

Susan Shore is now my beacon of hope

There are others too:

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.

You will want to avoid taking ototoxic drugs, avoid microsuction (performed when you need to clean wax out of your ears; a manual tool should be used), and not let your dental hygienist use an ultrasonic scaling tool on you (a manual tool should be used). For more details, see

https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

[Steph1710]

Hi @jdrumstickz (Jonathan)

Unlike you I developed tinnitus suddenly last week. I guess mine is here to stay also. I too have "scoured" the internet.

Anyway, nice to meet you.

Steph X

 

[jdrumstickz]

Thanks Lucifer! I don't believe I have hyperacusis. There's no particular sound that bothers me per se. However, I'll probably keep an ear out for any noise that's painful from now on. I've heard things about FX-322! Although I'm not sure if it will help me, because it seems to me FX-322 is meant to help regrow damaged auditory hair cells. I actually just got a hearing test from an audiologist.. and they said my hearing was above average. So apparently I don't have hearing loss, and yet the only explanation I have for my tinnitus is being around drums. I think this one might be an unsolved mystery for me.

There are others too:

You will want to avoid taking ototoxic drugs, avoid microsuction (performed when you need to clean wax out of your ears; a manual tool should be used), and not let your dental hygienist use an ultrasonic scaling tool on you (a manual tool should be used). For more details, see

https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

Thanks for the resource - a lot of interesting food for thought. Let's go science! I think my dental hygienist has used that ultrasonic tool all my life. That would have been unfortunate if it was a casual factor in my tinnitus.

Hi @jdrumstickz (Jonathan)

Unlike you I developed tinnitus suddenly last week. I guess mine is here to stay also. I too have "scoured" the internet.

Anyway, nice to meet you.

Steph X

Glad we both "scoured" our way over here. I know how overwhelming and confusing it can feel during the initial stages of getting tinnitus. Take it easy! Nice to meet you too.

 

[Bill Bauer]

I think my dental hygienist has used that ultrasonic tool all my life. That would have been unfortunate if it was a casual factor in my tinnitus.

There is no reason to take that risk. It is my understanding that manual tools are as fast as the ultrasonic tool, and are as effective.

 

[Lucifer]

Even though your audiogram is above normal you may still have damaged hair cells. You would need to get a high frequency hearing test but I would guess 99.99% you have damage hair cells even though it looks normal in your audiogram and since you used to play the drums it is very likely that your hair cells were damaged.

Another reason why your hearing test could be normal is that you may have a mild form of hyperacusis.

 

[jdrumstickz]

There is no reason to take that risk. It is my understanding that manual tools are as fast as the ultrasonic tool, and are as effective.

Noted, thank you. I also noticed your comment on ototoxic drugs and it's starting to make more sense to me. As someone who used to work out very frequently, I used to depend heavily on ibuprofen / acetaminophen on days that I sustained weightlifting injuries. I also drink alcohol regularly (in controlled amounts during social settings) and have always enjoyed a cool IPA on a summer day. Perhaps these have exacerbated the tinnitus caused from my drumming days. I may have to be a rebel and keep drinking my IPAs though.. those are hard to give up.

Even though your audiogram is above normal you may still have damaged hair cells. You would need to get a high frequency hearing test but I would guess 99.99% you have damage hair cells even though it looks normal in your audiogram and since you used to play the drums it is very likely that your hair cells were damaged.

Another reason why your hearing test could be normal is that you may have a mild form of hyperacusis.

This makes sense! I wouldn't be surprised if there is damage then, because I've been in really loud environments as a drummer (a few concerts in there too.)

I'm new to all of this information, so forgive my ignorance.. but is it possible for noise-induced tinnitus to be somatic in nature? I can modulate my tinnitus with my jaw in certain ways, and I've read that some people who can modulate it with their jaw can attribute their tinnitus to TMJ as opposed to noise. I've had a sore jaw once or twice, but overall my jaw function is quite great. Hoping to find some clarity on this one.

 

[Lucifer]

Noted, thank you. I also noticed your comment on ototoxic drugs and it's starting to make more sense to me. As someone who used to work out very frequently, I used to depend heavily on ibuprofen / acetaminophen on days that I sustained weightlifting injuries. I also drink alcohol regularly (in controlled amounts during social settings) and have always enjoyed a cool IPA on a summer day. Perhaps these have exacerbated the tinnitus caused from my drumming days. I may have to be a rebel and keep drinking my IPAs though.. those are hard to give up.

This makes sense! I wouldn't be surprised if there is damage then, because I've been in really loud environments as a drummer (a few concerts in there too.)

I'm new to all of this information, so forgive my ignorance.. but is it possible for noise-induced tinnitus to be somatic in nature? I can modulate my tinnitus with my jaw in certain ways, and I've read that some people who can modulate it with their jaw can attribute their tinnitus to TMJ as opposed to noise. I've had a sore jaw once or twice, but overall my jaw function is quite great. Hoping to find some clarity on this one.

I can do that too, when I yawn my tinnitus is louder but when I stop it goes back to baseline. But I can assure you that your tinnitus is due to noise from playing the drums and attending concerts.

 

[jdrumstickz]

Thanks so much! One last question that hopefully anyone can answer... I seem to have received a conversation on this forum but it doesn't let me reply to it. Anyway to get around this one?

 

[Lucifer]

Thanks so much! One last question that hopefully anyone can answer... I seem to have received a conversation on this forum but it doesn't let me reply to it. Anyway to get around this one?

You have to wait until 48-72 hours to reply since you are a new member.

 

[Contrast]

I have an appointment with a therapist on Monday who is willing to help me get started on CBT/ACT,

What good will that do if it can't modify tinnitus?

Also does noise trigger the jaw pain?

 

[Bill Bauer]

I used to depend heavily on ibuprofen / acetaminophen

Acetaminophen ought to be ok, but ibuprofen is listed on the ototoxic medication list and there are also many horror story posts about it on this forum.
https://www.tinnitustalk.com/search/4150492/?q=ibuprofen&o=relevance

 

[jdrumstickz]

What good will that do if it can't modify tinnitus?

Also does noise trigger the jaw pain?

I've read a lot about how many people feel about CBT/ACT, and I do agree that it does nothing for the tinnitus itself. To share a little bit more about myself, I've been diagnosed with anxiety and OCD (both of which have manifested in my life for at least a decade.) OCD, anxiety, and the sudden realization that I have a currently incurable condition of tinnitus are all an unpleasant combo if left untreated for me. CBT/ACT is something I'm using to help treat the combination of these conditions so that I can maintain mental and emotional stability. I do acknowledge that it will not help the tinnitus at all. Until then, therapy will be best for me, and I will gladly send my support (and even my money) towards any initiatives that will lead to a cure!

 

[hans799]

Acetaminophen ought to be ok, but ibuprofen is listed on the ototoxic medication list and there are also many horror story posts about it on this forum.
https://www.tinnitustalk.com/search/4150492/?q=ibuprofen&o=relevance

Okay, that does it, I'm switching my official painkiller from ibuprofen to acetaminophen.

@jdrumstickz I've been living by Bill Bauer's recommendations for 3 years now and my tinnitus hasn't worsened (except for a temporary spike which was a known risk of a treatment I'm using). No loud sounds, no headphones, no ototoxic meds, dental prevention instead of dental work (that's also easier on the wallet, lol), earwax cleaning only via mineral oil ear drops. May sound like a lot to watch out for but it becomes routine after a while and requires almost zero effort.

Until we get a real cure, prevention is the only thing we have. The main lesson of these forums for me has been that carelessness can make tinnitus worse even if it's been stable for decades... and there is a world of difference between a quiet sound that's sometimes annoying at night and an unmaskable jet engine going off in your head 24/7.

Take care of your ears, man. Regenerative meds are coming but the few years until they get here will pass a lot quicker if you're not suffering through every minute of it.

 

[jdrumstickz]

Okay, that does it, I'm switching my official painkiller from ibuprofen to acetaminophen.

@jdrumstickz I've been living by Bill Bauer's recommendations for 3 years now and my tinnitus hasn't worsened (except for a temporary spike which was a known risk of a treatment I'm using). No loud sounds, no headphones, no ototoxic meds, dental prevention instead of dental work (that's also easier on the wallet, lol), earwax cleaning only via mineral oil ear drops. May sound like a lot to watch out for but it becomes routine after a while and requires almost zero effort.

Until we get a real cure, prevention is the only thing we have. The main lesson of these forums for me has been that carelessness can make tinnitus worse even if it's been stable for decades... and there is a world of difference between a quiet sound that's sometimes annoying at night and an unmaskable jet engine going off in your head 24/7.

Take care of your ears, man. Regenerative meds are coming but the few years until they get here will pass a lot quicker if you're not suffering through every minute of it.

Thanks for the good vibes man.

So an interesting development (not for my T... but my perception of it.) I called up my mom and shared with her my situation... turns out she's had T this whole time. The same kind as mine too. She said she always thought it was normal, and still thinks it's normal. She's also like the happiest person I know, and lives her life like a vacation (she's retired haha.) I'm blown away by her positive attitude. So until we get a cure, my current goal is to make my mind treat my T the way my mom's mind treats her T.

 

[jdrumstickz]

It's been over a week since I created this topic to introduce myself, and I just wanted to post an update.

Has my tinnitus decreased? No. It won't decrease, because it's noise induced and I damaged my ears when I was a teenager.

Has my attitude towards it changed? Has my quality of life gotten better? Actually, the answer to both is yes. After seeing my therapist and unpacking a few things I've been able to engage in some self-reflection. I can't explain it completely, but I've been through much worse in my past, and (as much as other people may look down upon it...) positive thinking and mindfulness kind of brought things back into perspective for me. I can still enjoy my blessed life, do the things in life I've been called to do, and not let my T get in the way of it.

I still get annoyed by it every once in a while, but it wasn't mentally draining me every minute of the day like it was a week ago. Like others have said, if you don't let it consume you... it kind of puts itself on the back burner and doesn't become a concern anymore. I've been able to focus on my work, my relationships, and my goals. I've been able to be happy.

I've also been holding on to the notion that we will get a cure (Hough Pill, Shores, FrequencyTX and many more,) which WILL happen in my lifetime.

All of these things combined have helped me turn a corner. It's going to be okay.

Now I absolutely understand and acknowledge that many people with T can't get to where I am right now, because of how intrusive the T might be. For that ... I'm truly and deeply sorry. And for that... I do want a cure to come sooner. Does anyone know the best place to contribute my money towards a cure?

I hope everyone is safe and doing the best they can!

 

[Lucifer]

Does anyone know the best place to contribute my money towards a cure?

I would say Hough Ear Institute. They need more money to be able to test for tinnitus as an indication in their clinical trials.

They can still release the drug for hearing loss and be able to prescribe it for off label use for tinnitus but it may not be covered under insurance at the very beginning unless it is proven that it does reduce or cure tinnitus.