Hi everyone,
I've had T for 6 months and 2 weeks now, and the 6 months mark was a difficult one to pass because I had high hopes that it would go away by then : this is exactly how long it took for a musician friend of mine to get completely rid of it, and I kept hanging onto this hope.
I have a hard time accepting that by now it's probably here to stay, and that even if I learn to live with it better and better, cochlear damage would likely have healed itself already if it was ever going to heal completely, and it is now very likely permanent, irreversible damage that I'm facing
Am I being realistic or wrong ? Did it completely heal and disappear (not habituate) for anyone here with unilateral noise-induced T beyond 6 months ?
Some background, longer story and a few tips for those interested :
My T started in May on the 3rd night of festivals I attended in a single week, as I was trying out a squelching high pitched synthesizer in a very noisy free-to-play area: I was enjoying myself so much that I stayed way too close to the speaker, for a fateful 15 mins or so. In a way, I inflicted this upon myself and I have been replaying the scene in my head so many times, dreaming that I had a time machine to go back and warn myself to stop right now, because was my life was about to change for the worst !
I love music and have attended quite a lot of concerts in my life (I'm 39), but I've never been too reckless : I've used custom molded earplugs religiously for more than 10 years ! But this time, I forgot them in a pocket somewhere for about 3 weeks, and of course that's when disaster chose to strike. I often tell people that I feel like someone who was sloppy just once and didn't use a condom, and was very unlucky to catch something nasty this one time !
The first month was full-time hell : researching options, reading this forum, going to doctors, crying...
I tried my very best and did get very good care quickly, did everything by the book, alas this was still not enough : high-dose prednisolone for 7 days, started less than 12 hours after onset (my partner is a doctor), ENTs a few days later, HBOT around weeks 2-4, and then gingko biloba, NAC.... nothing really helped.
Notched white noise made things worse if anything (triggers reactive T), notched music seemed to do nothing (I didn't try very hard though, because my T pitch is too high for most music)
The thing that really helped me instantly was "homebrew" ACRN. It's not quite the real deal, because my T is again so high pitched (14khz) that I can only hear the bottom half of frequencies anyway (real ACRN is 4 frequencies : 2 below, 2 above your T pitch). This means that the official clinic probably would have refused to treat me anyway ! ACRN does stop my T very reliably, but it comes back less than 10 seconds after I stop the tones, and I haven't seen any long term improvement from it after several months.
That first month, I also wore earplugs everywhere outside as I felt I also had mild H. I was terrified that ambulance sirens, car noises, etc would blow up my ears even more. Going back to my first concert (even with earplugs + extra protection headphones handy just in case) was also terrifying. Dental work was terrifying, etc..
Very early on (week 2 or 3), I tried to get into the AM-101 trial. Unfortunately, while my T is in the left ear only, for some reason I hesitated when they asked me on the phone, and because sometimes at night it felt it was all over my head, I told them it was bilateral. This excluded me from the trial, even after I explained myself further, and I was crushed because I had felt so lucky to have heard about it so quickly (week 1), and here I was, shooting myself in the foot again by saying the wrong thing, not getting the only chance at a treatment while I was still in the acute phase !
Later, I read that AM-101 didn't work so well and especially not for noise-induced T. Is there anyone here with noise-induced T who got better with AM-101 ?
After a month or so, I noticed that socializing, having a drink and enjoying myself with friends helped me not notice the T at all for several hours : this is the best single piece of advice I can give to anyone new to this : keep doing things you like, at all costs. I realize this will be difficult for someone with severe H, I have also read about people here whose antidepressants removed pleasure and excitement from everything : talk to your doctor before stopping any treatment of course, and it's okay to take ADs if they help keep anxiety in check, but my personal opinion is that if they prevent you at all from enjoying life, this will have an adverse effect on your T and if T is the reason you're taking your ADs, try transitioning to therapy maybe !
After about 2-3 months, I woke up and enjoyed my first almost completely T-free day. It didn't feel completely healed, but I would say it was a 1 or 2/10 volume. I had to pay attention very hard to notice it was here, and frankly that was good enough for me !
This is a major part of the hope I still have : I know there are some good days of almost complete relief, they happen maybe once every week or two and I appreciate them as a gift. I hope they'll be more and more frequent.
I wish I knew the formula to make such days happen on demand, but it's hard to say : that first day was a very relaxing summer day in the countryside, went to the swimming pool, worked out etc. Sometimes having a good night's sleep will help, but sometimes it's the reverse : less sleep than I need and T will be tired as well and not wake up ! The one consistent thing for me seems to be : sleep in too much and wake up too late in the day = guaranteed loud T !
At some point I also looked into somatic tinnitus : I had teeth problems, and read the research about trigeminal nerve input possibly contributing to tinnitus (i.e. pain from your teeth / face misinterpreted as sound, well tinnitus, in the brain !). My dentist was skeptical, but my T did get better in the few minutes after local anesthesia. It wouldn't be scientific to say this is definitely related though, maybe there were other factors in play. Fixing my teeth didn't help.
I also have TMJ problems and have yet to explore that path : because my T was so clearly noise-induced, it would be incredible if fixing joints / teeth in this way made it go away. But who knows ? Maybe the noise injury made the brain more sensitive to other nerve input in the face ?
So, I still want to see an osteopath someday, and maybe a TMJ surgeon. Any experience welcome !
I read a lot of research and there's an interesting paper from November about the link between noise-induced T and synaptopathy (I'll try and find the link again).
I'm hoping this new research, gene therapy, stem cell therapy will eventually help "fix us", but in the meantime the most difficult thing to admit is probably that we are powerless, we have fallen victim to an ailment that modern medicine still has no solution for, and this feels very unfair...
I've had T for 6 months and 2 weeks now, and the 6 months mark was a difficult one to pass because I had high hopes that it would go away by then : this is exactly how long it took for a musician friend of mine to get completely rid of it, and I kept hanging onto this hope.
I have a hard time accepting that by now it's probably here to stay, and that even if I learn to live with it better and better, cochlear damage would likely have healed itself already if it was ever going to heal completely, and it is now very likely permanent, irreversible damage that I'm facing
Am I being realistic or wrong ? Did it completely heal and disappear (not habituate) for anyone here with unilateral noise-induced T beyond 6 months ?
Some background, longer story and a few tips for those interested :
My T started in May on the 3rd night of festivals I attended in a single week, as I was trying out a squelching high pitched synthesizer in a very noisy free-to-play area: I was enjoying myself so much that I stayed way too close to the speaker, for a fateful 15 mins or so. In a way, I inflicted this upon myself and I have been replaying the scene in my head so many times, dreaming that I had a time machine to go back and warn myself to stop right now, because was my life was about to change for the worst !
I love music and have attended quite a lot of concerts in my life (I'm 39), but I've never been too reckless : I've used custom molded earplugs religiously for more than 10 years ! But this time, I forgot them in a pocket somewhere for about 3 weeks, and of course that's when disaster chose to strike. I often tell people that I feel like someone who was sloppy just once and didn't use a condom, and was very unlucky to catch something nasty this one time !
The first month was full-time hell : researching options, reading this forum, going to doctors, crying...
I tried my very best and did get very good care quickly, did everything by the book, alas this was still not enough : high-dose prednisolone for 7 days, started less than 12 hours after onset (my partner is a doctor), ENTs a few days later, HBOT around weeks 2-4, and then gingko biloba, NAC.... nothing really helped.
Notched white noise made things worse if anything (triggers reactive T), notched music seemed to do nothing (I didn't try very hard though, because my T pitch is too high for most music)
The thing that really helped me instantly was "homebrew" ACRN. It's not quite the real deal, because my T is again so high pitched (14khz) that I can only hear the bottom half of frequencies anyway (real ACRN is 4 frequencies : 2 below, 2 above your T pitch). This means that the official clinic probably would have refused to treat me anyway ! ACRN does stop my T very reliably, but it comes back less than 10 seconds after I stop the tones, and I haven't seen any long term improvement from it after several months.
That first month, I also wore earplugs everywhere outside as I felt I also had mild H. I was terrified that ambulance sirens, car noises, etc would blow up my ears even more. Going back to my first concert (even with earplugs + extra protection headphones handy just in case) was also terrifying. Dental work was terrifying, etc..
Very early on (week 2 or 3), I tried to get into the AM-101 trial. Unfortunately, while my T is in the left ear only, for some reason I hesitated when they asked me on the phone, and because sometimes at night it felt it was all over my head, I told them it was bilateral. This excluded me from the trial, even after I explained myself further, and I was crushed because I had felt so lucky to have heard about it so quickly (week 1), and here I was, shooting myself in the foot again by saying the wrong thing, not getting the only chance at a treatment while I was still in the acute phase !
Later, I read that AM-101 didn't work so well and especially not for noise-induced T. Is there anyone here with noise-induced T who got better with AM-101 ?
After a month or so, I noticed that socializing, having a drink and enjoying myself with friends helped me not notice the T at all for several hours : this is the best single piece of advice I can give to anyone new to this : keep doing things you like, at all costs. I realize this will be difficult for someone with severe H, I have also read about people here whose antidepressants removed pleasure and excitement from everything : talk to your doctor before stopping any treatment of course, and it's okay to take ADs if they help keep anxiety in check, but my personal opinion is that if they prevent you at all from enjoying life, this will have an adverse effect on your T and if T is the reason you're taking your ADs, try transitioning to therapy maybe !
After about 2-3 months, I woke up and enjoyed my first almost completely T-free day. It didn't feel completely healed, but I would say it was a 1 or 2/10 volume. I had to pay attention very hard to notice it was here, and frankly that was good enough for me !
This is a major part of the hope I still have : I know there are some good days of almost complete relief, they happen maybe once every week or two and I appreciate them as a gift. I hope they'll be more and more frequent.
I wish I knew the formula to make such days happen on demand, but it's hard to say : that first day was a very relaxing summer day in the countryside, went to the swimming pool, worked out etc. Sometimes having a good night's sleep will help, but sometimes it's the reverse : less sleep than I need and T will be tired as well and not wake up ! The one consistent thing for me seems to be : sleep in too much and wake up too late in the day = guaranteed loud T !
At some point I also looked into somatic tinnitus : I had teeth problems, and read the research about trigeminal nerve input possibly contributing to tinnitus (i.e. pain from your teeth / face misinterpreted as sound, well tinnitus, in the brain !). My dentist was skeptical, but my T did get better in the few minutes after local anesthesia. It wouldn't be scientific to say this is definitely related though, maybe there were other factors in play. Fixing my teeth didn't help.
I also have TMJ problems and have yet to explore that path : because my T was so clearly noise-induced, it would be incredible if fixing joints / teeth in this way made it go away. But who knows ? Maybe the noise injury made the brain more sensitive to other nerve input in the face ?
So, I still want to see an osteopath someday, and maybe a TMJ surgeon. Any experience welcome !
I read a lot of research and there's an interesting paper from November about the link between noise-induced T and synaptopathy (I'll try and find the link again).
I'm hoping this new research, gene therapy, stem cell therapy will eventually help "fix us", but in the meantime the most difficult thing to admit is probably that we are powerless, we have fallen victim to an ailment that modern medicine still has no solution for, and this feels very unfair...
