Tinnitus Talk Support Forum

Do not be sorry! Please ask me anything I am very happy to share and answer questions. I asked a lot of people a lot of questions at one time and still do from time to time!

I do have reactive tinnitus. I describe mine as sound reactive tinnitus, meaning noise, especially constant noise, will ramp up or exacerbate my tinnitus temporarily.

Over time, I am noticing the SMALLEST improvements with this. Meaning it will still react, but maybe not as loud anymore or my tinnitus will mix in the with background noise more rather than be louder than it (fridge running, heater running). it's not always linear, but I am able to notice positive things for sure. I still cannot do fans.

Thankfully, I do not have loudness hyperacusis. I am so blessed to say this as I know so many struggle with this. However, my inner ear damage was not noise induced, it was due to ear infection going into inner ear and causing nerve damage/sshl. Not sure how this allowed me to swerve loudness hyperacusis, but it did.

I dream of finding a solution to remove reactivity, I search for answers day and night,
but so far only theories... On this forum I read 3 people who got rid of reactive tinnitus - a Viking who took doses of Keppra and it helped him. Danny Boy (RIP) who also got help from Keppra A guy who had a slight hearing loss, he took steroids in bulk, and after drinking Mydocalm for 2 weeks, the reactivity went away.

I suggest you read up on @ZFire 's posts and threads. His experience, input, and discussion on sound therapy with soft music is very beneficial and good knowledge to have.

@Andrew40 I too hyper focused on "removing" reactivity. for months. For over a year. Until I came to realize my fixation on it brought more attention to it in my brain, and that did NOT help. I would get frustrated when I would read others say "once you stop fixating on getting rid of it, that is step one in it starting to improve and not control you."

@Andrew40 And honestly, after some intense therapy, I have found that to be more right than not. I am not perfect at it, and believe me I tried Keppra, just recently lidocaine shots, and MANY other things to just try to improve reactivity, and nothing showed to help me other than time, calming my brain, and entering back into the world in moderation.

@Andrew40 Reactive tinnitus is a subset of hyperacusis, in my opinion. This is absolutely possible to get better from. I've had H with reactivity for more than 4 yrs. The first 1 yr++ was rough. Therapy, sound enrichment, keep low stress levels, spend time in nature made the difference to me. Its a non-linear marathon.

But there must be a solution, it must be found..... Maybe the Susan Shore device will help..

@Andrew40 because I had inner ear nerve damage, and my most intrusive tinnitus is definitely somatic, I have positive hopes for her device and I do believe there is a chance it could help reactivity.

@ErikaS based on my reading and chats with my father who is also a doctor he seems to think FDA approval within 2024 is almost darw I say certain?? Maybe soon I'll book my flight to the US for beginning of 2025 a year from now :)