Reactive Tinnitus for the First Time: Are There Success Stories?

[K89]

Hi everyone,

I've had tinnitus for years now following a brain hemorrhage, and over time, I've reached a point where I can almost completely ignore it. It feels like white noise in the background—it's there, but it doesn't bother me, and I only notice it if I actively look for it.

Unfortunately, I made a mistake when I attended a wedding without hearing protection. My ear started to burn during the event, but nothing happened immediately. A few days later, I noticed a strange whine, my first reactive/distorted tone. It reacts to water, white noise, and almost everything else, and I can hear it over all other sounds.

It's really tough. I've never experienced this before, but I know how crucial it is to maintain a positive mindset during this process. I'd love to hear from anyone who has had their reactive tinnitus improve or become unnoticeable. How long did it take for you?

Thanks for your support. I haven't been back here in a while, but I'm grateful Tinnitus Talk exists for us to share and support one another.

 

[AverageJoe12]

Hi everyone,

I've had tinnitus for years now following a brain hemorrhage, and over time, I've reached a point where I can almost completely ignore it. It feels like white noise in the background—it's there, but it doesn't bother me, and I only notice it if I actively look for it.

Unfortunately, I made a mistake when I attended a wedding without hearing protection. My ear started to burn during the event, but nothing happened immediately. A few days later, I noticed a strange whine, my first reactive/distorted tone. It reacts to water, white noise, and almost everything else, and I can hear it over all other sounds.

It's really tough. I've never experienced this before, but I know how crucial it is to maintain a positive mindset during this process. I'd love to hear from anyone who has had their reactive tinnitus improve or become unnoticeable. How long did it take for you?

Thanks for your support. I haven't been back here in a while, but I'm grateful Tinnitus Talk exists for us to share and support one another.

I'm really sorry to hear about the reactive tinnitus. Some have likened reactive tinnitus (unstable tinnitus) to migraine-like processes. Reactive tinnitus may respond to migraine prophylaxis protocols.

How was the brain hemorrhage diagnosed?

 

[Kumashi]

I'm really sorry to hear about the reactive tinnitus. Some have likened reactive tinnitus (unstable tinnitus) to migraine-like processes. Reactive tinnitus may respond to migraine prophylaxis protocols.

How was the brain hemorrhage diagnosed?

Hi @AverageJoe12.

When you say 'migraine prophylaxis protocols,' are you referring to NeuroMed Tinnitus Program — Founded by Dr. Hamid Djalilian?

Thank you.

 

[Nick47]

Hi @K89, sorry to hear what you're going through. Welcome, though. I'm in a similar situation. After 2–2.5 years, my reactivity decreased from a 10 to a 6. It's still quite reactive but moderately less severe. However, there are still days when it spikes back up. I started to improve, but a night out with hearing protection caused a setback a few weeks ago. At this stage, I believe CBT is crucial for you. Avoid all loud places and try to continue with your normal activities in low to moderate environments. Personally, occasional use of clonazepam has been helpful for me.

A potentially better approach might be to consider the NeuroMed combined approach based on Dr. Hamid Djalilian's research, which explores the links between hyperacusis, tinnitus, and migraines, focusing on shared pathways.

This treatment is a synergistic approach involving medications, supplements, CBT, and sound therapy. Individually, there's limited evidence for each component, but together, they could be effective. If affordability is an issue, a GP could handle the prescribing and coordinate CBT. I suggest bringing published papers on hyperacusis and tinnitus to your GP as supporting evidence.

Many clinicians refer to reactive tinnitus as hyperacusis, although there is some ongoing controversy regarding this terminology.

 

[K89]

@AverageJoe12 brain hemorrhage was diagnosed via CT scan. I went to the hospital once I started experiencing a thunderclap headache. Weeks later, certain frequencies started sounding off for a day, then it stopped, then the ringing started (and never stopped, but things got better a couple years in).

This feels new. Never had any reactive ones, though I definitely have had the craziest temporary sounds come through over many years.

Migraine protocol is interesting, thanks. I don't get migraines but since the reactive tinnitus I've had headaches on that side.

 

[BuzzyBee]

My tinnitus has been reactive for almost a decade now, but I think I'm in the minority, and most people have it for a shorter period of time.

 

[Kumashi]

I am trying to understand the mechanism behind my reactive tinnitus. I'm unsure of the underlying model or cause that makes it react. If anyone has insights, please let me know.

I've had tinnitus since 2004, but the reactive type started about two months ago.

 

[BeepBeep]

There's a good chance you'll return to baseline if you allow your ears to heal. I'm not a doctor, but I've been in similar situations and have come out okay. If I were in your position—and I have been—I would rest my ears completely by using earplugs for 2-4 weeks (I would recommend at least four weeks). This approach has worked for me in the past.

 

[Muggumbo]

My reactivity is intermittent but it was really bad at first. Lately even when there is reactivity it isn't that bad. It look a little less than a year for it to get to where it is now.

 

[Kumashi]

There's a good chance you'll return to baseline if you allow your ears to heal. I'm not a doctor, but I've been in similar situations and have come out okay. If I were in your position—and I have been—I would rest my ears completely by using earplugs for 2-4 weeks (I would recommend at least four weeks). This approach has worked for me in the past.

Thank you.

My reactivity is intermittent but it was really bad at first. Lately even when there is reactivity it isn't that bad. It look a little less than a year for it to get to where it is now.

Did you follow a particular regimen? Were you in a quieter environment initially? Please let me know if you think any specific approach worked that could help me.

Thank you.

 

[Muggumbo]

Thank you.

Did you follow a particular regimen? Were you in a quieter environment initially? Please let me know if you think any specific approach worked that could help me.

Thank you.

Avoiding loud environments and wearing earplugs when I drove mostly. I tried various supplements but not sure how much of a role they played if they even did anything at all. I think time, patience, and protection have been the biggest factors in my improvement.

 

[Kumashi]

Avoiding loud environments and wearing earplugs when I drove mostly. I tried various supplements but not sure how much of a role they played if they even did anything at all. I think time, patience, and protection have been the biggest factors in my improvement.

Will do. Thank you.