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My Cure for Sound Sensitivity

bthompsonjr1993

Senior Member
Messages
176
I have discovered something that has cured my sound sensitivity, it is TINNITUS RETRAINING THERAPY. I had HORRIBLE sensitivity to sound, and tinnitus retraining therapy SAVED me. The sensitivity was so bad that I was literally on the verge of ending it all, I thought there was no hope, I thought there was no chance it would work, but I had to give it a shot, and it WORKED. I highly, highly, highly recommend it to all CFS patients suffering with sound sensitivity (hyperacusis). It works for all types of sound sensitivity, no matter the cause. It is the only CFS symptom that I have ever been able to improve. If sound sensitivity is something you are struggling with, please please please try tinnitus retraining therapy. I did it without spending a dollar. All I did was listen to this video


in headphones at a level so low that if I turned it any lower it would not be audible. And I listened to that for every moment of the day that I could, and then when I would get used to it and forget I was even listening to it, I would turn the volume up one, and I just continued that process, but then when I was up to a reasonable volume on that video, I switched over to this video


and did the same thing with that video, starting from a barely audible volume and working my way up. I spoke with an audiologist about this, and she said that it is all about retraining the brain's involuntary emotional response to sound. We need to re-teach our brains what a normal level of sound is, and this is how we do it. The more noise you can expose yourself to without freaking out, the better. My rule was that I would spend as little time in silence every day as humanly possible. The more time you spend in silence, the more you allow it to progress. I was so severe that I couldn't tolerate the low, barely audible whirr of the AC in my place. Now I am pretty much back to normal.

If you have any questions, please ask me, I would love to help in any way I can.
 
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Starsister

Senior Member
Messages
834
Location
US
@bctjr1993 Thank you so much for sharing this. I live alone and am not around people much and i actually had the thought the other day, when explaining to someone that I was going to have a hard time going to visit relatives because I wasn’t used to having to be around other people’s noises. Thankfully, I watch tv all the time but do mute commercials, and any thing loud or annoying. Sometimes I just want to know there is a world still out there. I will try this audio. Is this on YouTube or is there a way to download it to my phone to play? I’m so glad it helped you. I have tinnitus a lot, and it’s been particularly bad lately where it just feels like it’s driving me crazy. I just want peace and quiet, at least in my head!
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
Similarly, I had read somewhere that CBT could be effective in helping people reduce the emotional stress caused by tinnitus. It's not a cure for the underlying condition, but a way of relieving the stress of constantly hearing an alarming or annoying noise. How ironic, since most of us here have had to fight against those who propose the use of CBT to 'treat' ME/CFS. I do hope that these videos help people! The sounds are softer than most white noise machines and are not hard to tolerate at low volumes, and the imagery is relaxing. Did you find them fatiguing at all?
 

Hip

Senior Member
Messages
17,824
I was so severe that I couldn't tolerate the low, barely audible whirr of the AC in my place. Now I am pretty much back to normal.

Very interesting. Do you have to keep listening to these white noise video tracks every day, in order to keep your sound sensitivity from returning?

Or has your sound sensitivity disappeared completely?

My theory is that sound sensitivity (hyperacusis) is due to a sensory gating dysfunction in the brain (sensory gating is the brain's "firewall").
 

bthompsonjr1993

Senior Member
Messages
176
@bctjr1993 Thank you so much for sharing this. I live alone and am not around people much and i actually had the thought the other day, when explaining to someone that I was going to have a hard time going to visit relatives because I wasn’t used to having to be around other people’s noises. Thankfully, I watch tv all the time but do mute commercials, and any thing loud or annoying. Sometimes I just want to know there is a world still out there. I will try this audio. Is this on YouTube or is there a way to download it to my phone to play? I’m so glad it helped you. I have tinnitus a lot, and it’s been particularly bad lately where it just feels like it’s driving me crazy. I just want peace and quiet, at least in my head!

I just listened to the YouTube videos, I have Bluetooth headphones that I just synced to my phone as it played these videos all the time. It has helped my tinnitus too, I notice it a lot less now than I used to. In fact, I hardly ever notice it now, and it used to get so bad I felt like my ears were vibrating from it.

Be patient with these videos, don’t rush it. Sound exposure is the way to go, but when you are exposed to the sound you have to practice being as calm as possible. My audiologist provides me with this print off (I am attaching an image of it), and instructed me to put it up all over my house. She said that the reason our brains are freaking out at sound is because something has happened to cause them to erroneously believe that these low levels of sound are too loud and will do damage to our hearing, so a large part of fixing it is using your conscious thoughts as much as possible to remind yourself that “No, brain, you need to relax, these levels are WELL below anything that would hurt me.”

Of course it is challenging to do that, and sometimes sounds will be loud or jarring enough that it just won’t be possible to stop your brain from freaking out, but whenever possible you must rationalize yourself down from the automatic brain freakout. For example, here is a situation that never made sense to me until I learned that concept: when my sound sensitivity was really getting bad, I was scheduled for an MRI, and when I got in the small tube for it, even though they gave me earplugs and earmuffs, that thing was loud, within 30 seconds I felt like I was going to scream and cry and have a panic attack, especially knowing I would be in there for 40 minutes.

However, after a couple minutes, I just accepted the fact that no matter how horrible the next 40 minutes would be, “this is happening, there is absolutely nothing I can do about it, I am just going to lay here and take the beating”. And somehow that managed to somewhat calm me down for the rest of the process. But the interesting part is that the rest of that day and the two days that followed, my sound sensitivity was the best it had been in months! That is what initially got me I believe in the concept of tinnitus retraining Therapy.

Anyway, sorry for my rant, I just want you all to benefit like I have benefitted, and I really believe in this tool. As always, let me know if there is anything else you want to know!
 

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bthompsonjr1993

Senior Member
Messages
176
I think my sound sensitivity is correlated with stress and anxiety. I don't notice it so much unless I am stressed and anxious. When I get that under control it seems to do better.

It is. The stress response is what is reaponsible for the type of hyperacusis that CFS patients have. Tinnitus retraining Therapy is about teaching your brain to chill out when it comes to sound, but external stress can certainly cause fluctuations in the level of sound sensitivity!
 

bthompsonjr1993

Senior Member
Messages
176
Similarly, I had read somewhere that CBT could be effective in helping people reduce the emotional stress caused by tinnitus. It's not a cure for the underlying condition, but a way of relieving the stress of constantly hearing an alarming or annoying noise. How ironic, since most of us here have had to fight against those who propose the use of CBT to 'treat' ME/CFS. I do hope that these videos help people! The sounds are softer than most white noise machines and are not hard to tolerate at low volumes, and the imagery is relaxing. Did you find them fatiguing at all?

I do not find them fatiguing because as I listen to them I get so used to them that I forget I am even listening to anything after a while! And you are right. Authentic tinnitus retraining Therapy involves incorporating CBT on top of the noise therapy. However, I did not use the CBT, but I would have if the sound therapy alone wouldn’t have been enough. Yes I also found it interesting that CBT, which DEFINITELY is not helpful for any other CFS symptoms, is actually beneficial for this specific one as it helps you be proactive and intentional about retraining your brain and controlling your stress response
 

bthompsonjr1993

Senior Member
Messages
176
Very interesting. Do you have to keep listening to these white noise video tracks every day, in order to keep your sound sensitivity from returning?

Or has your sound sensitivity disappeared completely?

My theory is that sound sensitivity (hyperacusis) is due to a sensory gating dysfunction in the brain (sensory gating is the brain's "firewall").

I listen to them every day, I’m sure I don’t have to, but I do it just as a preventative measure so I can be proactive in keeping it from getting worse again. It is still there but only with really loud noises, but it doesn’t impact my life, I now go through my life without even owning a pair of earplugs (which I used to require at all times).

The only thing that causes my hyperacusis to fluctuate now is when I am extra fatigued or stressed or anxious in general, but even so, when it fluctuates it doesn’t get anywhere NEAR as bad as it used to be, I can always listen to radio and watch TV with no discomfort. My audiologist said this is typical (the small fluctuations with stress/anxiety after you’ve made a huge improvement), but that as long as you keep it up (the reasonable noise exposure), it will never go back to being anywhere near as bad as it was at its worst.
 
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Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
If you have any questions, please ask me, I would love to help in any way I can.

Hi @bctjr1993,

Thank you so much for this thread. I too am dealing with HORRIBLE hyperacusis. I've had it for many years, but has gotten so much worse since taking an ototoxic drug on Feb. 3 of this year. I don't have much energy at the moment, but I do have some questions.

I'll start out with my main question: Did TRT actually do anything to affect any tinnitus you may have had? Or did it only affect your hyperacusis? I didn't have tinnitus before Feb. 3, but now have a fairly severe case of it. I'm looking for anything that might help, and I'm hoping TRT might help with that as well as with hyperacusis. -- Thanks!
Anyway, sorry for my rant, I just want you all to benefit like I have benefitted, and I really believe in this tool.

Didn't interpret that as a rant at all; but a lot of good information from somebody who's "been there". What you're sharing with us is precisely the kind of information I'm diligently seeking out these days. -- So thank you again for your efforts in sharing your techniques and insights!
 
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Moof

Senior Member
Messages
778
Location
UK
So glad you've found a way round it. I took a different tack – really effective ear plugs made by Flare Audio that block everything but bone-conducted sound – but they can get uncomfortable after wearing them for hours. I'll look into this, thank you!
 

Starsister

Senior Member
Messages
834
Location
US
I think my sound sensitivity is correlated with stress and anxiety. I don't notice it so much unless I am stressed and anxious. When I get that under control it seems to do better.
I know mine increases when my body feels weird in other ways.
 

bthompsonjr1993

Senior Member
Messages
176
Hi @bctjr1993,

Didn't interpret that as a rant at all; but a lot of good information from somebody who's "been there". What you're sharing with us is precisely the kind of information I'm diligently seeking out these days. -- So thank you again for your efforts in sharing your techniques and insights!

Awesome! And of course, I want to help everyone with this symptom as much as I can. Let me know if you have any other questions about it.
 

bthompsonjr1993

Senior Member
Messages
176
@bctjr1993 been trying it the last few days. It seems very positive so far. I can go longer without wearing earplugs each day. I'll report back in a week or two ;)

Hell yeah! I love hearing that.
Just keep at it, and keep pushing yourself at a reasonable pace. You will have some ups and downs, but you should generally continue trending up and up. Can't wait to hear how you are doing in a couple weeks.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
@bctjr1993 So I've been doing this more than a month now and I'm dubious about the results. OTOH Its nice to listen to normal music again but at the same time I've found that it is harder for me to relax and I stopped reading for the most part.

I think that if music has singing or a beat I can't focus at all so it prevented me from reading. My condition has also gotten worse. I am unsure of whether they are related. Too many variables!

I think overall my sound sensitivity improved... but it has its downsides as noted above. It is something I will continue to work on this and hopefully I will be able to tease more sense out of it
 

Seven7

Seven
Messages
3,444
Location
USA
I have always been sensitive to sound ( so is my mom and you child) and mine comes and goes, when my brain is inflamed, is very severe. But it changes from one day to the next. So not sure if the undelaying Cfs issue is with getting used to and more a my brain is inflamed situation.
 

bthompsonjr1993

Senior Member
Messages
176
I have always been sensitive to sound ( so is my mom and you child) and mine comes and goes, when my brain is inflamed, is very severe. But it changes from one day to the next. So not sure if the undelaying Cfs issue is with getting used to and more a my brain is inflamed situation.

This treatment is supposed to work no matter the cause of sound sensitivity. I read the book by the creator of the treatment, and he goes into detail about that. It worked for my CFS induced hyperacusis