Has Anyone Had Distortion/Reactive Tinnitus Go Completely Away?

GBB

GBB

Member
Author
Hall of Fame
Sep 1, 2020
1,464
NYC
Tinnitus Since
2016-2019 (Mild, Cured) 8/2020 (Severe)
Cause of Tinnitus
Virus / Microsuction / Acoustic Trauma
#1
I realized today if I stay in near silence, my tinnitus goes down to very low levels, almost imperceptible. However, as soon as I turn on a TV or take a shower or anything, 2 things happen.

1) External noise carries with it a squeaky sound - this for me is the worst. If I could get rid of this I could mask my tinnitus. It seems to come with everything. My understanding is this is distortion/reactive tinnitus which are part of hyperacusis.

2) My baseline tinnitus goes up after exposure to noise, which is bothersome but not as problematic as 1.

Everywhere I look, people talk about H sort of subsiding, and distortion sort of getting better, but it's never clear cut. I can't live my life with a squeak plying after every noise. I need to know someone has had distortion go completely away to give me hope, otherwise I'm gonna go nuts.

I will try Keppra, but has anyone has this distortion go away?
 
#2
Following this thread like my life depends on it ; )

I truly believe if it I could get past the reaction/distortion effect, either because it fades or because I don't notice it, I'd be on my way back to a normal life.
 
#3
GBB said:
I realized today if I stay in near silence, my tinnitus goes down to very low levels, almost imperceptible. However, as soon as I turn on a TV or take a shower or anything, 2 things happen.

1) External noise carries with it a squeaky sound - this for me is the worst. If I could get rid of this I could mask my tinnitus. It seems to come with everything. My understanding is this is distortion/reactive tinnitus which are part of hyperacusis.

2) My baseline tinnitus goes up after exposure to noise, which is bothersome but not as problematic as 1.

Everywhere I look, people talk about H sort of subsiding, and distortion sort of getting better, but it's never clear cut. I can't live my life with a squeak plying after every noise. I need to know someone has had distortion go completely away to give me hope, otherwise I'm gonna go nuts.

I will try Keppra, but has anyone has this distortion go away?
Click to expand...
I believe @Jason C had total resolution of reactive tinnitus. He has mentioned in his posts that music sounded broken to him, but I'm not sure if he had the sound overlay issue you are having. He does mention his tinnitus volume reacted to external noise.

He now seems to have silence besides several episodes of fleeting tinnitus per day from his reports on here. Maybe you should message him.
 
#4
Same man. Music sounds distorted. And if I get a spike or setback the reactivity gets 10x worse. Fans, running water, wind, fridges, and any loud noise sounds like there's a whistling sound on top of it. Most maddening part of hyperacusis besides the pain.

If I can get past the pain and distortions and be able to listen to music, my life would be nearly normal again and I'd have enough patience to wait for regenerative cures in the pipeline.
 
#6
Zigs said:
I have read a lot of accounts of people this has gone away for - @Tinker Bell, @orbiter12, @Raphael7713, @Mark Beehre, @fedup, @Tom Cnyc and many others. Mine is currently unbearably reactive and I have no idea why. But I read their posts and cling to hope. Hope that gives you some comfort!
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Your profile says you've had tinnitus since 2009. When did it become reactive?

I've only had mine a little over a year now, but it's been reactive the whole time.
 
#8
I get the distortion really bad sometimes.

After a CT scan it was found I had really diseased sinuses on that side and when they were really infected my tinnitus/distortion would go through the roof.

Maybe worth getting a scan done to rule it out! X
 
#9
@GBB @Zigs @weab00 @GoatSheep do any of you have a vaguely foggy head sensation most of the time? I'm getting an MRI next week but for some reason I feel like it's just my brain being overtaxed with all the weird signals. I'm also just now tapered off prednisone, and my ENT thinks that could be the cause, or maybe just lingering issues from whatever caused my sudden hearing loss. It's not vertigo or even really dizziness.

Also, are any of you still working full time? I'm hanging on for dear life, but a big part of my job is being "on" for video calls with colleagues and clients, and I'm not sure how I'm going to pull this off. Would love to trade tips if you have any

(apologies for presuming that we are all in the same boat if it comes across that way)
 
#10
StayCalm said:
@GBB @Zigs @weab00 @GoatSheep do any of you have a vaguely foggy head sensation most of the time? I'm getting an MRI next week but for some reason I feel like it's just my brain being overtaxed with all the weird signals. I'm also just now tapered off prednisone, and my ENT thinks that could be the cause, or maybe just lingering issues from whatever caused my sudden hearing loss. It's not vertigo or even really dizziness.

Also, are any of you still working full time? I'm hanging on for dear life, but a big part of my job is being "on" for video calls with colleagues and clients, and I'm not sure how I'm going to pull this off. Would love to trade tips if you have any

(apologies for presuming that we are all in the same boat if it comes across that way)
Click to expand...
I have had a weird head buzzing sensation that felt like my brain was getting bombarded at times, almost like there were hidden frequencies zapping my brain, but not all of the time, just infrequently. It's very weird and particular so may not be what you are describing.

I'm on leave from my job right now since September, but hoping I can improve enough to return at some point. I likely will be out at least until December, if not longer.

I know what you mean about dealing with client and colleagues - since this has happened I've had a crazy short temper - especially for people just shooting the shit and talking about non work-related stuff. I feel like my ears have a budget now, especially with compressed phone and video chat noise which is really grating for me. It's really damn tough in that regard.

Weirdly, one thing which is helping me is @R. David Case's Tinnitus Mix. It's kind of abominable to listen to and almost comically cacophonous, but it's so busy that I can't isolate and hear my tinnitus among it. Before this nothing would mask my tinnitus because it would be too steady, and so my brain would hear and isolate the tinnitus tone, but this is so unpredictable, I can sort of give my brain a rest. I know it sounds nuts but it feels really nice to just shut off - I think my brain is being hypervigilant and just creating the tinnitus wherever it can - with this, it is utterly perplexed. I have multiple sounds that cycle, and sometimes it seems like listening to this for a while will kind of give me a skip track on the more annoying ones.

Edit: It's also so random that even though I'm sure my brain is distorting tones, I can't discern the distortion from the rest of the chaos, so it really feels like a break from the tinnitus.
 
#11
StayCalm said:
@GBB @Zigs @weab00 @GoatSheep do any of you have a vaguely foggy head sensation most of the time? I'm getting an MRI next week but for some reason I feel like it's just my brain being overtaxed with all the weird signals. I'm also just now tapered off prednisone, and my ENT thinks that could be the cause, or maybe just lingering issues from whatever caused my sudden hearing loss. It's not vertigo or even really dizziness.

Also, are any of you still working full time? I'm hanging on for dear life, but a big part of my job is being "on" for video calls with colleagues and clients, and I'm not sure how I'm going to pull this off. Would love to trade tips if you have any

(apologies for presuming that we are all in the same boat if it comes across that way)
Click to expand...
No, I don't have a foggy feeling. I have lots of pressure in my face and jaw. I also have a constant feeling of imbalance, but I had a ear surgery that I think has caused this vestibular issue.

No, I don't work and I haven't since I got tinnitus, hyperacusis and TTTS.
 
#12
GBB said:
I know what you mean about dealing with client and colleagues - since this has happened I've had a crazy short temper - especially for people just shooting the shit and talking about non work-related stuff. I feel like my ears have a budget now, especially with compressed phone and video chat noise which is really grating for me. It's really damn tough in that regard.
Click to expand...
This is 100% me right now. I literally just drop off calls if it's internal and people are rambling or even remotely off topic. My coworkers know what's going on with and I'm probably still coming across as a psycho haha.

@GoatSheep I think my fogginess is more like imbalance, actually. I haven't noticed much in the way of memory or critical thinking issues now that I think of it, and all things being equal, I was half expecting them.

Sorting of jumping topics, buy if it helps anyone, I forced myself to meet up with friends at the beach today, and it wasn't half bad. The super loud NorCal wind and surf, which is not supposed to be the most pleasant part of the beach experience here, really helped cover up the sound distortions. I was terrified to go but I'm so far I'm glad I did. Home now in the quiet and not paying the iron price yet, so we'll see.
 
#13
I've only experienced it once, two years ago. I was terrified really, I heard my own voice twice each time I spoke. Luckily it was bed time so I had an excuse to disappear. I remember that the next morning, I whispered something to myself - scared to death - and I had to try a few times before I dared to use my "normal" voice. The echo was gone, and it came back only once one year later, also in the evening. Maybe it's a coincidence, but both times were during the exams so I link my experience to stress. However, if it's continuous I have no idea...

One of my friends was born deaf, but she can hear thanks to a very expensive hearing machine (not sure about the English terms here, sorry!). She has this "metal plate" in her head which is connected to two magnets on both sides of her head. She told me that when her left and right magnets aren't getting an update regularly, she also gets hearing distortion because one ear (and so one side of the brain) gets different information compared to the other one. This won't probably help you...
 
#16
StayCalm said:
@GBB ok, just tried Tinnitus Mix and you weren't joking - it not only overwhelmed my tinnitus, but also sent my cat fleeing in terror haha.
Click to expand...
Ya, I'm not sure if it has any healing properties, but it was a nice change from the incessant tones I had been experiencing...
 
#17
GBB said:
Ya, I'm not sure if it has any healing properties, but it was a nice change from the incessant tones I had been experiencing...
Click to expand...
I always have distortion, although I find it tends to get worse after too much noise exposure or a setback. Probably has to do with inflammation.
 
#19
StayCalm said:
@GBB how are you doing? I'm having maybe some not-as-bad days, I think.
Click to expand...
I've been having some better days on Pramipexole, but last night I decided to watch a movie on my laptop at 50% volume - it was a 3 hr film so maybe a bit long. I woke up this morning as bad as ever, so maybe shot myself in the foot a bit with that one.

Hoping it goes back down as I feel pretty miserable today. I'm glad to hear you are faring better!
 
#22
GBB said:
If my tinnitus lowers I swear to God I'll become an activist.

Has your tinnitus improved? If so congrats!
Click to expand...
I can't tell yet to be honest, but I'm definitely doing a little better in the past week or so. I'm not obsessing over it as much, and can do some simple things like have a phone or Zoom call and not be consumed by listening for distortions. When I'm not obsessing over it, I believe I perceive the volume as being a little lower. Then, sometimes because I foolishly check in on it and other times because it has a life of its own, it becomes very loud again.

I'm still a long ways out from being even 50% of my old self - like, right now I couldn't meet with up friends (outdoors and safe etc etc) and be truly present for them and not constantly thinking about (and feeling sorry for myself about) my tinnitus, hearing loss, sound distortions, and so forth. But, doing something like that doesn't seem entirely impossible in the future now, and in the first half of October I had almost no hope for anything along those lines.

Have you tried working with a tinnitus counselor or similar yet? I just started working with one and it has helped.

Also, and I won't knock this board because it has been a lifeline to me in so many ways, cutting back on my visits to Tinnitus Talk and other online tinnitus resources has been a helpful.
 
#23
StayCalm said:
I can't tell yet to be honest, but I'm definitely doing a little better in the past week or so. I'm not obsessing over it as much, and can do some simple things like have a phone or Zoom call and not be consumed by listening for distortions. When I'm not obsessing over it, I believe I perceive the volume as being a little lower. Then, sometimes because I foolishly check in on it and other times because it has a life of its own, it becomes very loud again.

I'm still a long ways out from being even 50% of my old self - like, right now I couldn't meet with up friends (outdoors and safe etc etc) and be truly present for them and not constantly thinking about (and feeling sorry for myself about) my tinnitus, hearing loss, sound distortions, and so forth. But, doing something like that doesn't seem entirely impossible in the future now, and in the first half of October I had almost no hope for anything along those lines.

Have you tried working with a tinnitus counselor or similar yet? I just started working with one and it has helped.

Also, and I won't knock this board because it has been a lifeline to me in so many ways, cutting back on my visits to Tinnitus Talk and other online tinnitus resources has been a helpful.
Click to expand...
In a way, you are lucky you have to "look for" your distortions because mine are right there. I notice mine every single second except when in a quiet room. I would love for mine to be mild enough to have to "look for" or "check in" on them because it would at least give me some hope it would go away someday. The more noise I'm around, it seems the louder the distortions get...
 
#24
Ava Lugo said:
In a way, you are lucky you have to "look for" your distortions because mine are right there. I notice mine every single second except when in a quiet room. I would love for mine to be mild enough to have to "look for" or "check in" on them because it would at least give me some hope it would go away someday. The more noise I'm around, it seems the louder the distortions get...
Click to expand...
Agreed that the distortions are terrible, probably the second worst part of hyperacusis besides the stabbing pain. Basically I have had to stop listening to music because of sound distortions; it makes the frequencies blend together and the mix sounds like a mess. I think it's probably either caused by damaged OHCs or inflammation or both. Our brains have trouble processing all the sound due to hearing loss so some of the frequencies sound like a "whistling."
 
#25
weab00 said:
Agreed that the distortions are terrible, probably the second worst part of hyperacusis besides the stabbing pain. Basically I have had to stop listening to music because of sound distortions; it makes the frequencies blend together and the mix sounds like a mess. I think it's probably either caused by damaged OHCs or inflammation or both. Our brains have trouble processing all the sound due to hearing loss so some of the frequencies sound like a "whistling."
Click to expand...
What do you do to get through the day without music and YouTube?
 
#27
weab00 said:
Nothing with sound. All sound triggers hyperacusis. Although sound from my family is unavoidable. Trying to learn graphic design, browsing Reddit, crying. Hate my new hyperacusis life.
Click to expand...
Hey have you ever read on here from people who say their tinnitus is severe but yet they say they don't hear tinnitus when listening to music so they enjoy it just fine?

I don't understand how some who claim their tinnitus is severe talk about how they still go to cinemas with ear plugs and music sounds fine but yet when I try and listen to music and it doesn't really matter what type of music it is but I'll hear a whistle or beeps on top of it so I don't understand how you can have severe tinnitus and not hear it in music yet these same people hear tinnitus over everything and music sounds great to them? I don't get it.

I think maybe their tinnitus is not really that severe or maybe they don't have dysacusis? As dysacusis is a bit different than just hearing tinnitus over everything?

I'm still learning about this.
 
#28
Ava Lugo said:
Hey have you ever read on here from people who say their tinnitus is severe but yet they say they don't hear tinnitus when listening to music so they enjoy it just fine?

I don't understand how some who claim their tinnitus is severe talk about how they still go to cinemas with ear plugs and music sounds fine but yet when I try and listen to music and it doesn't really matter what type of music it is but I'll hear a whistle or beeps on top of it so I don't understand how you can have severe tinnitus and not hear it in music yet these same people hear tinnitus over everything and music sounds great to them? I don't get it.

I think maybe their tinnitus is not really that severe or maybe they don't have dysacusis? As dysacusis is a bit different than just hearing tinnitus over everything?

I'm still learning about this.
Click to expand...
Tinnitus is scary at every level so everyone thinks they're a severe case. I try not to participate in the suffering Olympics.
 
#30
Just wanted to say my distortion has faded a ton - air conditioning and fans used to produce a squeaky noise I couldn't stand, but that is now largely gone. Similarly, I used to hear a whirly tube sound over many external sounds. It might still be there sometimes if I look for it, but it went from being in the foreground to the background.

For me the primary issue is now just loud tinnitus, and reactivity, which unfortunately is still quite debilitating.
 

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