I Want to Become a Musician... Should I Not Because of Having Tinnitus and Minor Hyperacusis?

This blows man. Do you think there will be hope after FX-322/Otonomy?

 

Yes, between those and the retigabine, I think it’s incredibly unlikely we’ll still be suffering from hyperacusis for very long. I’d say 2025 the absolute latest we’ll be fine. Probably a lot sooner tho. The new XEN-496 (one of the new reimagined drugs) is going into phase 3 this year, FX-322 is coming along very nicely and in my opinion is likely to be released early and the synapse drugs are all doing well also.

I know it blows, trust me I’ve been there. I had to go thru the grief process and expect that life is going to be harder and different for a while because of this condition. I used to love music and now can rarely listen to it. I miss it. But I know I’ll get to live a normal life again, probably in the next year or two. Don’t lose hope, science is coming to rescue us.

 

I’ve been following most of the research pretty closely lately and I agree with what you’re saying. Hopefully I will get to pursue becoming a musician after so many wasted years, for now I will be biding my time. I hope that after treatment and drugs like retigabine we will be able to pursue our lives to the fullest extent possible. Do you think our ears and auditory capacity will be restored to that of a normal, healthy person after all these hair cell/synaptic treatments plus retigabine?

Also to my understanding retigabine is a reworked and improved version of Trobalt, which caused severe visual snow in several unlucky people. How is the timeline/side effects the drug looking?

 

Interesting questions. Unfortunately there’s no way to know these things for sure. I think we’ll have a better idea after FX-322 phase 2A trial is done.

The only concern I have is if we’re genetically predisposed to having ear disorders and therefore will never be truly normal. But at least with treatments you could get it done again if you fuck up again.

I think the timeline is different depending on the drug. The one being developed by Dr Thanos is years away, Xenon is working on two right now. One of which is a pediatric formulation that’s about to go into phase 3. Which version comes out first is the one I’ll be taking

As far as Retigabine questions go however, I’d recommend you talk to some of the people who were on Trobalt back in the day and ask them about their experience in terms of what they could do while on the drug. The new Retigabine is going to be a lot more potent though, so it’s not a total estimate but it would be interesting to gauge.

 

Okay yeah. I'm pretty determined to return to my dream of being a musician if/when regenerative cures come to save us. I know Sound Pharmaceuticals is looking very promising on reducing inflammation, FX-322 for hair cells of course, and OTO/Hough for synapses. Guess I'll have to put my dreams on hold for now, but what's 5 years in comparison to 50 years, right.

 

5 years maximum btw. That’s a worst case scenario. And that’s how I feel, a few years and then you get to live a long happy life. Stay strong buddy.

 

Michael,

Do you have an opinion about air travel? Much appreciated!

 

A piano is different from a rock concert. I would not have wanted to go to a Motorhead concert even with earplugs in and sit in the front row. Last concert I went to was Beck and it was open air and I was kind of towards the back. If I ever go to a rock concert again it will be an open-air festival type show and be way in the back. That way I can modulate how loud it is by how far I jam the plugs in my ears. But you don't want it so loud that even with them in all the way you still somehow are sensing it being too loud due to the sounds literally penetrating your skull. Indoor shows have this reverberation effect off the walls which is really bad.

Now, as for being a musician, that's a really broad thing and there's whole genres of music that are quiet. Soft jazz (with no sax/horns), new age, singer-songwriter, folk. It can be done. I mean, Billie Eilish has made a career out of whispering. It may suck if you aspire to do harder driving music to have to tailor the genre around your condition, but it's better than abandoning music altogether.

 

I haven't travelled on a plane in years. If I needed to travel by air, then I would go and not let tinnitus stop me. Use noise reducing earplugs if you're concerned but I don't think they will be necessary. Fear and anxiety can convince a person they are unable to do certain things. Don't let this stop you from enjoying life.

 

Link to Townshend's tinnitus being cured, please?

 

I don't really understand how any duration of headphone use at a very low volume is a no-go, but other than that you are very lax on noisy actions of life. I personally don't use headphones at all anymore, but I'm also very vigorously protecting my ears in other areas of life as well.

 

Mate, I love me some of that Beck.

 

What you have written is completely different to what I have been saying about headphone use. My advice is only for people with noise induced tinnitus. Many times I have explained the risks of using headphones for people with this type of tinnitus. Please search my post history, then type headphones in the search box at the top of this page and read the posts.

 

You're free to sling advice but don't expect everyone to treat it as gospel, that's all.

 

Good question. Actually I've re-read a few interviews with him. What he says most often is that it doesn't bother him any more. Not that it's completely gone away.

He had some shows lined up in 2010 which were postponed due to a recurrence of his hearing issues which he thought at the time had been cured. He seemed to get over those issues again, because a few years later he was doing multiple tours and saying it was just a problem he had "back in the 70s". He may have said it's "completely cured" in one interview just through being dismissive of the risk and not wishing to cancel any more shows - wishing it away perhaps. He appears unsympathetic to any concert-goers coming to his shows that might suffer hearing damage, saying it's "their risk".

He puts his healing down to homeopathic cures (he doesn't say which ones), plus keeping volumes down on stage. I think I read that Phil Collins also saw a homeopathic doctor who has treated a number of rock stars with hearing issues, so possibly the same doctor. How much actual science there is behind it, I don't know.

 

I did, but still don't understand how open-back headphones or bone-conduction headphones at a very low volume would be more dangerous than loud external noises of traffic or an airport/airplane.

 

I just wanted to add my take in here. I got permanent tinnitus when I was 20 from pursuing a career in music. Afterwards, I was depressed/suicidal for a year because I couldn't enjoy music at all and my life had been [and still kinda is] ruined. I considered getting a degree in library sciences because I couldn't see any kind of future for myself.

In lockdown though, I had a chance to really think through all that stuff. And I realized there were two options for me: I could have a career that I wasn't satisfied by but have low level tinnitus, or I could have a fulfilling career and terrible tinnitus. Neither are good options. It all comes down to what I think I can handle. And personally, I would rather deal with five tones screaming in my ear than the pain of never being able to follow my dreams. That's just a personal thing, because even though I'm young, I have a lot of regrets, and they all involve not living fully or not pursuing my passions. I don't want to live like that anymore.

Other people are welcome to disagree. But I can't let down the 12 year old in me who wanted to be a musician more than anything. I just wish I knew the cost would be so high.

 

At least you’re going for your passion. Just be aware of the costs, hopefully you’re a lucky one and nothing happens.

 

Don’t get me wrong but I find it very counterproductive when you say one should be wary of loud sound but at the same time enjoy life and not let anything stop him/her.

 

That is entirely your choice.

 

I took up violin last year and after 2 months had to give it up despite wearing earplugs. My tinnitus settled back to baseline once I stopped. This was from 20 minutes practice a day.

 

Well done. It must have been hard giving up something that you wanted to do but you made the right decision.

 

I’ve been following your posts and find them very informative. I’m a musician with unilateral tinnitus in my left ear. Some days it goes very quiet and others it really flares up. Since the onset, I’ve stopped using headphones or earphones of any kind. I think I have also lost some hearing in low frequencies in my left ear.

My question is: I use studio monitors to make music at very low volumes in order not to aggravate the tinnitus. I want to know if it’s safe to do that or to scrap it altogether?

Hoping to hear from you soon,
George

 

It is safe to do this and there is no reason why you should stop making music in a controlled environment. Do not make tinnitus the centre of your life; if you enjoy making music and it makes a meaningful difference to your life, then carry on doing it.

 

Hi George,

Thank you for your kind comments. I want to apologize for my brusque reply to your earlier post, because I thought you were another troublemaker that I would have to place on ignore, but clearly this is not the case.

Noise-induced tinnitus is complex. Whilst no two people will experience it the same, they will share some similarities in the way it behaves. If a person is experiencing hyperacusis or has some oversensitivity to sound, which can accompany noise-induced tinnitus, they often complicate the condition. Hyperacusis, or having oversensitivity to sound, can improve by itself with time, or specialist treatment may need to be sought. I note that you have had tinnitus for approximately 9 months, therefore you are still in the habituation stage.

Since you have been reading my posts, you know my recommendations for treating noise-induced tinnitus, in order for it not to get worse. I agree with your choice not to use headphones. If you suspect that you have some hearing loss, my advice is to be examined at ENT and be referred to an audiologist if the fitting of a hearing aid(s) is recommended. Hearing impairment can make tinnitus worse but once hearing is restored to optimum, with the help of hearing aid(s) the tinnitus usually improves.

Since you are a musician and still in the habituation stage, my advice is not to give up music too quickly. Carry on mixing and monitoring your music at low level through speakers and see how you get on. I recommend that you take frequent breaks to give your ears and auditory system time to rest. Therefore, it probably is not a good idea to be mixing music all day. It's a matter of trial and error to see what works for you because we are all different. Giving up music altogether might make you feel miserable and that's something you don't want.

Providing you are not playing drums or an electric guitar in a band, I think you should be alright. Take things slowly and give the healing process time. Remember to use low level sound enrichment at night using a sound machine. Please make the appointment at ENT.

All the best,
Michael

 

Seeing this thread being slightly active caused me to go make an effort post I've been meaning to do for a while:

→ Constructing a Nice Amateur-Grade Music Studio with Chronic Tinnitus and Relevant Considerations

 

Thank you for your kind words. I’ll do what I have to do to make sure all goes well. Wishing you all the best.

Thank you very much for taking your time to reply me. I’ll definitely take notice of your directions and and seek help. I’m supposed to go to the ENT sometime this week or next to get my ears checked thoroughly. I’ve already had a hearing test which showed that my hearing is normal but after further self-tests, I realized I have lost some degree of hearing in low frequencies in my left ear. I’ll do well to follow your directions and hopefully I’ll come back to give a good testimony. Thank you once again Michael.

George