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bohmaniac

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Posts: 11
Reply with quote  #1 
Hi everyone! I'm Emil from Sweden. Been reading on this board for the past 2 months, ever since I got H in my right ear from a blow to it... My symtoms have varied during this period but for the past weeks it has grown steadily worse, leading me to think I'm doing something wrong. I'm now at the point of having a hard time tolerating conversations, due to the "s":s sounding harsh. I usually turn my left ear to whoever I'm speaking to, an avoidance habit I don't like but it saves me from pain. But I'm not really protecting my ears much at all and I have not limited my activities much either. I willfully tolerate difficult situations when I know the sound is below 80dB, even though it makes me anxious to do so. I'm still playing football (soccer) using cotton in my ears. It makes my symtoms worse afterwards but then "normal" again the day after. Cotton is something I use when I want a break from enduring sharp sounds, but I always feel bad for using it because I want to endure as much as possible. I'm thinking I might be overdoing it and so I'm going to try for a few days to use cotton pretty much whenever I'm around bothersome sounds... Shouldn't be too dangerous to do for a few days, right?

I have tried to use pink noise therapy but my T spikes pretty badly even on the lowest possible volume, so I haven't touched it in a while and instead I'm using nature sounds which I find quite soothing. I'm wondering however how much it actually builds my tolerance. Any soothing sound wouldn't be training my ear, right? I'm thinking the waterfall would be better for that than the water stream-sound... I read on this site about a Spanish protocol where people had improved lots from listening to nature sounds only 30 minutes a day for 9 weeks with increasing levels. So even though no improvements yet I'm sticking to those sounds for now. Have any of you guys gotten better from nature sounds? Or do I simply have to start with the broadband noise as even though it spikes my T and makes me uncomfortable?

Swedish healthcare has no idea about TRT btw, they just told me to relax, go home and not be in silence. Good advice but still, why no TRT? ...

About enduring normal sounds... I'm thinking if my LDLs for certain frequencies are in the 40s (which I have measured myself), would exposing myself to like 40-60 dB (or 40-50?) sounds containing those frequencies be more beneficial than exposing myself to 60-80 dB sounds with a "no pain no gain"- kind of attitude, firmly believing I can't get worse if it's below 80dB...? [tongue] If so, that would mean using cotton to dampen conversations would be good, as it puts the volume down to where it is just above my LDL, thus training it optimally...? Or is it better to avoid 60-80 dB levels alltogeather, staying in 40-60dB environments? (I use my phone app quite extensively to measure sounds [tongue])

Any pointers would be helpful! 
Thanks!
/ Emil
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Neil58

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Posts: 82
Reply with quote  #2 
Hi Emil,

I also have the S sound sounding harsh, from other people but mostly when i say them. It seems to happen after certain sound exposure when that specific frequency spikes for some reason. It doesn't do it often. For me.

No one really knows what the right thing to do is, either go about your usual activities but wear earplugs or stop doing those activities. I tried the former but didn't seem to be getting any better so i have stopped activities that are loud and do not wear ear protection much at all unless i am in a loud area. Im not sure what kind of protection cotton would give you over earplugs, but probably good that you haven't gone to earplugs as extended use will make it worse. If i were you, i would take a break from soccer for awhile, like the rest of the season. I think you are spiking your symptoms every time that you do it. You might feel better the next day, but you might find that day 2 or 3 is much worse. It depends on the severity of your H.

If pink noise bothers your ears, you might try white, brown or grey noise. They are all broadband sound but with different frequencies filtered out. There are some apps for this. I think the broadband sound would be better for reestablishing your sound tolerance but the nature sound are a good supplement.

Whatever you do, go read some of Jastreboffs and Hazels sites for a protocol, so you don't make it worse by a homebrew protocol.

The apps for sound meters are a bit dubious. Read the reviews, most of them are not very accurate. After reading those reviews i bought a real sound meter instead. You don't want to measure things all the time with it or you can become phobia about sound which can make it worse.

The no pain no gain approach doesn't seem to work with this. It can make it worse. You need to add in sound from the lowest db level or lowest delta between your LDL and sounds.. A 20db spread is huge. Remember that the db scale is logarithmic so 6 db is double the sound.

I wouldn't use cotton or earplugs all the time for conversations. When you block your ears with anything, the brain turns the gain up even further over the long term. Id use ear protection for short durations in louder sound environments.

Hope this helps,
Neil
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Aplomado

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Posts: 711
Reply with quote  #3 
Hello,

I'm doing the spanish protocol that you mentioned, though my results are much slower than they reported.  I am doing water sounds, and a believe it is helpful.  Right now I don't mind listening to 52 decibles of water noise for 30 minutes (when I started it was at about 35!).  So if you find the water sound better than pink noise, go for it.

I am also doing TRT all day with the sound generators.  I recommend that very strongly.  I'd look for a TRT provider in Sweden.  If you can't find you a provider, maybe you can get a hear aide salesman to order you a sound generator to do your own?  I'm using the General Hearing Tranquility sound generator.  Just have it tuned to a comfortable volume and wear it as much as you can (I wear it all the time).

yrs

aplomado
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bohmaniac

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Posts: 11
Reply with quote  #4 
Thank you for your replies... Yes I do probably need to take a break from football or wear earplugs the rest of the season (that would look whacky though but who cares).

Cotton gives me some relief but not complete relief. I use cotton on and off during the day to rest my ears when I feel needed. It seems to help and it seems like it doesn't impact the internal auditory gain much, which is nice. In my experience, cotton mostly reduces higher pitched sounds and lets the lower pitches through.

Aplomando... good to hear you're progressing! I'm actually progressing a bit too, but far from good. It seems like my internal gain has reduced but that physically my ear is still hurting from high pitched sounds above certain decibels (mostly above 50). Exposure at a reasonable level is to aim for, and I guess our own instincs will give the best answers to that after some time of experience...

I can't find a trt provider here. Right now I'm hoping to get better without TRT, as I have done some progress just exposing myself to normal sounds just living as usual, even though it's very uncomfortable and hurts my ears at times. I mostly dislike high pitched impact sounds. Mouse clicking is somewhat uncomfortable for example [tongue]. What are your main stressors?
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bohmaniac

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Reply with quote  #5 
A question I have regarding TRT, if I do eventually start doing it, is whether I should do it with both ears or if it's sufficient to just have the pink noise in the afflicted ear?

Thank you
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Aplomado

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Posts: 711
Reply with quote  #6 

Hello,

I would do both ears.  Hyperacusis may start in one ear but it usually moves over to both.  I would defintely make an effort to find a trt practitioner.  If you can't I bet an ordinary audiologist could order you the ear pieces and you could do it on your own.  They are expensive, but worth it.  I use the general hearing tranquil ones.

This lets you do sound therapy all day, rather than just when you sit in front of a music player.

High pitched noises are the worst.

Keep in mind when starting TRT you may not be able to detect much difference at first- once you start improving the gains will come faster in my opinion.

I waited six months to start TRT, and that was a HUGE mistake.  I should have started it right away.  This condition is obviously devious (otherwise I would be all done by now, rather than about halfway through) and relapses are possible, but TRT and other sound therapy has helped a lot in the past, and is helping me now.  I pray to God that in a few more months I will be mostly normal.

aplomado

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DanMalcore

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Dan
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Posts: 1,456
Reply with quote  #7 
Yes, it is important to do both ears.  No qualified clinician has ever recommended doing just one ear.  This would be the clinician you should be seeing because they are current on the latest TRT protocol...


Esma Idrizbegovic, M.D.
Karolinska Institute &
Huddinge University Hospital
Stockholm, Sweden
46 8 585-815-56
46 8 585-711-6288 fax
esmaidr@hotmail.com 

[wave]Dan

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"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
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bohmaniac

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Reply with quote  #8 
Understood... Aplomando, how did your condition progress over the first 6 months when you weren't doing TRT?

I was however almost back to normal for a few days last week, making fast progress with nature sounds and a switch of environment. Then I got a bit over-confident and played one full football game without protection and the referee's whistle sounded quite fine at the time (huge progress I thought) but afterwards I got a setback which is still carrying on. I'm about 50% better from when I was at my worst though. Why is it beneficial to get those expensive items when I could just carry around my phone+earbuds? Like if my battery runs out? [tongue]

/ Emil
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Aplomado

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Reply with quote  #9 

I went from an LDL of 60 decibles to 105 decibles during the first six months of TRT.  That's how I know it works.

Then I had a relapse three months later (bagpipes) and have been struggling to recover ever since.  I have had a couple of relapses in my treatment that have made it extremely difficult since then.  It's frustratrating.

With the ear devices, they give off broadband sound and you can easily wear them 24 hours a day.

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bohmaniac

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Posts: 11
Reply with quote  #10 
Just an update and a question...

I feel like I'm improving gradually. More specifically: I've desensitized myself to reacting to sounds, but the high frequency discomfort and loudness has only marginally improved. I'm still not doing TRT, but I'm doing nature sounds a bit every day and trying to expose myself to sound normally.

My question is whether any sound that is uncomfortable, even slightly so, can be beneficial to improving tolerance, or are only tolerable sounds below ones discomfort level able to do that?

/ Emil
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Aplomado

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Reply with quote  #11 
Did I improve before I did TRT?  I don't know... my ears were HORRIBLE though, and when I started TRT my LDLs were 60 decibels, which is excruciatingly painful.  They did MUCH MUCH better with TRT though improvement is still very slow esp at first.

I was a fool for delaying start TRT for 6 months, hoping I would cured on my own.  It didn't happen.

"My question is whether any sound that is uncomfortable, even slightly so, can be beneficial to improving tolerance, or are only tolerable sounds below ones discomfort level able to do that?"

I don't know. 

Give TRT a try.  It's worth the money to not be miserable.

Right now I'd guess I am about halfway through the therapy again.  Hopefully no more than three months to go, but God knows.
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bohmaniac

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Reply with quote  #12 

Hi again,

Did it take time to get accustomed to the pink noise or was it comfortable right away for you? Do you wear your devices the entire day and at which volume? Do you raise the sound level when you feel it's time or do you follow a protocol? How much external sound is let in through your devices?

Thanks!

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Aplomado

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Reply with quote  #13 
My sound generator gives off broadband sound not pink noise.... it does take some time to get used to it.  At first when I wore the sound generators they made my ears hurt, and I had to turn them down a lot.  Gradully I was able to turn them up without hurting as my ears adjusted.  So, yes, it does take time to adjust, that does not mean you should quit.  The sound is adjustable, so you can turn it down.

Some people wear them like 8 hours a day at first or something similar.  Now, I wear mine as long as I am not in the shower, even when I sleep.  The sound generators aren't raised in volume on a schedule- though you may have to have them very low at first.  Once they are a moderate volume (maybe 8 decibles or so) you just leave them that way.

My other sound therapy (water noise 30 minutes a day) is raised as I feel comfortable.  My goal is raising it two decibles a week, but I have fallen beind that.  When i started I was at 35 decibles for 30 minutes daily, and now I am 54 decibles for 30 minutes a day.  When my ear is annoying me a lot, I skip a day.  54 is a lot better than 35, I can tell you.  Based on my previous experience, when I reach 60, I will feel "ok" and when I reach 70 I will feel close to normal.  It took me a long time to start making improvements for some reason (months!) but these past few months I started making real progress.  I keep a daily log of my progress. 

The devices don't muffle external sounds at all really.  They aren't supposed to, so you can hear normally.  They look exactly like hearing aides that fit behind your ear and are retained witha  plastic cord.  They are expensive, but let you do sound therapy all day and night.

The sound generator is the general hearing brand tranquil instrument made for tinnitus masking.  I bet an audiologist could order you one if you don't have a TRT practicioner nearby.
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