From Darkness to Light, How I Recovered from Tinnitus & Hyperacusis

Hello, @Della, I'm really thankful for your kind words, and I hope it is okay if I reach out to you one more time.

Have you seen or read from people in your time on the forum or in your personal environment who are still heavily struggling after 5 months with tinnitus and eventually got habituated a few months later or maybe after a year or two? Is it worth persevering?

And yes, I actually know that it doesn't make sense to compare yourself or your own timeline with that of others.

What makes it particularly difficult for me is that the noise is rarely less intrusive. I can almost never block it out and am always thinking about or monitoring it.

 

@KaiT81, I'm happy to be able to help a little. Tinnitus Talk was a lifesaver for me when things spiraled out of control back in 2014, and I continue to keep up with it in order to give back a bit of that help.

Yes, I know of people here in the forum and in my personal life who have struggled heavily for longer than five months. I myself had a horrible time with tinnitus that became severe after being mild and unobtrusive for years. I used to think that the high-pitched ringing everyone talks about was the only form of tinnitus, but in 2014, I began to experience low-pitched sounds. Those were far worse for me because they were often right in the same frequency range as conversation, music, TV, etc., and they were so loud they drowned out all other things. I would also have episodes of hyperacusis. I struggled with that for at least two years before I acclimated. For me, part of the habituation process was getting past the terror... accepting that even if it felt and sounded like my head was going to explode, it couldn't really hurt me. Strangely enough, a couple of years later, I saw my doctor, and she put me on blood pressure medication, which gradually calmed down the low sounds and vibrations! I still have continual high-frequency tinnitus, but it seems not so bad after all that.

If you're interested, here's the thread I found in 2014 when things were really bad for me:

Low Frequency Tinnitus

Be kind to yourself and to your ears. Good luck!

Della

 

And in the end, despite their long struggle, did they still acclimate to their situation and regain their lives?

Today, I'm having another very bad day (after always having better days, too), and I almost can't believe what you're saying. But your posts still give me a lot of hope and encouragement to persevere.

 

Hello @KaiT81, I'm glad you wrote... I've been thinking about you. In answer to your question, absolutely, despite long, hard struggles, most people eventually acclimate to their situation (as surreal as it is) and regain their lives.

I'm sorry today's a very bad day, but if you're having better days, sometimes that's a sign of hope. Try to make the most of those better days and be present for those who love you (because they're suffering too) while still being careful with your ears. You know, no going to movies without earplugs, etc. Later today, I'm going to the first movie I've been to since COVID-19! I always carry three sets of earplugs in my purse and use whichever ones I need for the situation (they're different levels of sound blocking). One pair is over the counter, and the other two are custom-made by an audiologist. I highly recommend the latter.

Persevere! You can do it.

Hugs,
Della

 

Did you think of me? That's nice. You are a kind person. It's great that you went to the cinema. I hope it was a lovely evening and you had a good time. Thank you again for your kind words, even if they weren't quite as positive as in the last posts. I really hope that my good days are the first signs of habituation and that I will soon see the light at the end of the tunnel. It's tough sometimes to keep going and wait for things to get better. Because time passes infinitely slowly, and you're right: it's anything but pleasant for my loved ones, my wife, and my children, and I can't give them too much at the moment!

 

Have you found any helpful providers in Austin for the condition? I've recently returned to ATX, and Illuminear Audiology was the only provider I've seen, but I haven't been in a while.

 

I'm in ATX too! I went to Paula Rivers at RK Audiology, and she was great. I haven't been back since COVID-19, but this reminds me I should go in and have things checked. They're the ones who made my two sets of custom earplugs and who got me my hearing aids. I chose them because they work a lot with professional musicians and understand the unique challenges.

→ https://rkaudiology.com/

What did you think of Illuminear? I've been curious about them but haven't tried it.

 

Ah, okay—I'll definitely keep that in mind! For such a live music city, I can't be the only one dealing with this issue. My friends are always going to shows, and I still can't believe I'm the one who got injured at 30. It's going to be a long road, whether it's recovery, acceptance, or habituation, if that's even possible for me.

Dr. Keaner (spelling?) at Illuminear seemed very knowledgeable, but I haven't tried any real therapy with her. I think she could provide me with masking hearing aids, but I also have some hyperacusis in my right ear, which means sound therapy doesn't always feel comfortable."

 

You're definitely not alone in dealing with this. I'm sorry it hit you at such a young age. I was also offered masking with my hearing aids, but that just felt like adding more noise.

Have you been following Lenire? It has gone through multiple trials, received FDA approval, and is now in use.

From their website: "Dual Mode is a form of bimodal neuromodulation. This is when two stimuli produce beneficial changes in the brain. Lenire combines audio through wireless headphones and mild pulses to the tongue to help you pay less attention to your tinnitus."

I'm now the caregiver for my ill husband, so I haven't had the chance to check if anyone offers Lenire in town or if insurance would cover it. But it's something different to consider.

Interestingly, I've had a flare-up of worse tinnitus for the past few days. A few nights ago, I noticed the volume increased significantly, and the sound changed from a high-pitched ringing to a low-pitched roar, like sitting in the tail section of a 747. It drowns out many other environmental sounds, and there’s also some hyperacusis and sound distortion. For example, while practicing guitar, the chords sounded garbled, especially on the two lowest strings. This was awful when I was still trying to perform. Now, I just wait for it to calm down again.

Good luck!