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briann

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Posts: 141
Reply with quote  #1 
I'd just like to first layout the success story that was as inspiration, and then the mistakes that followed to act as a warning to remain careful to those who recover.

I first developed Hyperacusis in April of 2009. I was trying many high end new headphones over a period of about a month. A few weeks in I started noticing some discomfort but I figured like every other pain I've felt it would go away. A few weeks after that, my headphone amplifier squealed when the amplifier input was disconnected with the headphones still over my ears. I believe it was that sudden loud impact that caused this, however it is possible I would have developed it anyway with the continued headphone use. The first symptoms were warmth and itchyness in the ear (inner or middle ear. Most assume inner). There was a bit of a burning later. And then it was general soreness. 

The first few days were horrible. I couldn't handle work noise. I had to stop on the way home for my first set of ear plugs since the road noise us unbearable. I started reading these forums and was terrified. The first few days I wore earplugs almost always. I kept wishing that I'd wake up and everything would be healed. It did not work like that. After a week or two, I would still need earplugs when watching TV at low volume. No chance for going to a movie or concert. People would come to my cubicle at work for a discussion and I would need to make an excuse so I could walk away.

Gradually (very gradually) things got better. I didn't need earplugs when watching TV. I could start listening to low volume music on speakers. I could go to movies with earplugs in. That was after a few months. After a year, my tolerance increased even more, I could go to parties comfortably, day to day sounds did not cause discomfort but movies and concerts I still wore earplugs. Two years after the initial incident I was essentially back to normal. I even got headphones again. The search was not as long and I made sure to always listen at low volumes. I could go to movies without earplugs. I was what I thought completely recovered (with occasional soreness after some headphone listening) and remained that way for another 3 years.

I write the part above to give hope. You can get better.

I write the part below to give warning. Although you can get better, you must still be careful. Your actions can lead you back to this forum.

It is 2014 and I have developed hyperacusis from my own carelessness. I could handle concerts, movies, etc. without earplugs but I couldn't handle what got me here in the first place. I went looking for new headphones again. After a period of about 2 weeks of comparing headphones (not at high volumes for normal people), I started feeling a familiar soreness. I tried to be careful. Waited a week before listening again and only listened at very low volume for a short period of time. I had recovered from soreness every time since the initial incident and did not expect this to be any different. The soreness never resulted in full blown Hyperacusis either. I had just needed to stay away from music for a week or two.

I am here because as of yesterday I can no longer talk to my girlfriend without earplugs. I cannot sit in my apartment without earplugs. I cannot watch TV even with earplugs. I cannot sleep due to anxiety and depression that the miracle that happened before had been thrown away. I pray that it will happen again. But I don't remember it being quite this bad. 

We will see how this goes and I will be sure to post any positive updates but I'm not as hopeful as I once was. I know I won't wake up tomorrow with things all better. I am in the process of reshaping my outlook on life again. With the knowledge that I might get better but that it is possible that I won't. 

As a message to others: Please know that it is possible to recover. But please listen to your ears and be careful. 

As a request for support:
First, any doctor recommendations in the san francisco bay area would be appreciated. My experience last time is nobody had a clue (hearing test was all that was performed and it was normal). 
Second, I'm working through my anxiety fueled insomnia and depression now. I also don't want to depress my family and girlfriend. I am trying to find a way to be positive in a very negative situation. I just haven't found that way yet. If you have any suggestions I'd appreciate it.
Third, My strategy is to prevent soreness from occuring for a few days. This means earplugs at all times. I know that can cause greater sensitivity to sound, but possibly it helps with whatever healing can happen early on. It was noise exposure that made this worse to begin with so perhaps blocking it can help at first. I'd appreciate hearing any comments on full blown protection for the first few days (or weeks) since the initial incident.
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phacker

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Posts: 143
Reply with quote  #2 
Hi Brian,

Sorry to hear about your set back.  I would recommend that you start a TRT program with ear level noise generators.  I see on the H web site there is not a TRT certified listed audiologist in Northern California. Please see the post below from Snow_World who was able to get help in the Bay Area for H & T. I understand that the Audiologist Department at UCSF also treats H & T.  You may want to give them a call.  If you want any help on what to look for and questions to ask in a qualified audiologist that can treat H & T, let me know and I would be glad to put something together for you.  Have you had your ears tested by an ENT to confirm that you do not have a medical problem causing your issue?

You may want to send Snow_World a private e-mail asking for the name of the audiologist but the post is a couple years old.   

You can check out the Speech Center of Northern California Web site for more information on their treatment program for H & T.. In may areas across the USA and the world there is not a qualified treatment program for H. I hope this helps you get started in the correct direction for treatment. 

PH   

Reply with quote  #1 
The reason there are no Bay Area doctors listed on this site is because they likely did not take the weekend-long course to be trained in Jastreboff TRT.  At least with the doctors at the Hearing and Speech Center of Northern California, they are just as qualified to treat hyperacusis as those that practice Jastreboff TRT. 

In San Francisco, I have seen a great audiologist at the aforementioned Hearing Center.  My progress has been very slow, but I also have a chronic migraine condition that has been a huge obstacle.  My audiologist said all of her H patients have shown improvement when they follow their treatment plans.  I am doing modified TRT.

A few months ago, a member named superseve1985 found a doctor to treat H at Kaiser somewhere in the Bay Area, but we have not heard from him in awhile.

If you find any other SF Bay Area audiologists that treat hyperacusis, feel free to add them to this thread.

Snow_World

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briann

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Posts: 141
Reply with quote  #3 
Hi phacker,

I worry about starting the TRT program immediately when perhaps there is some healing that can be done in the first few weeks. What was your experience? My preference is to wait at least two weeks to see if I can at least have a mild improvement in my condition like I observed last time at first. I was also able to gradually recover without noise generators. The headphone aspect of it was not working for me.

I went to 3 ENTs when this first happened in 2009 and none of them were much help. Only had the hearing test done which showed I was normal. They could not define any medical problem and they assumed it was recruitment. I'm not sure what other tests they can run (ear drum visual inspection was fine). I have not seen anyone about this recent condition.

Thank you for the UCSF recommendation. I will give them a call and I greatly appreciate your help. 
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Cheryl_K

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Posts: 101
Reply with quote  #4 



Hi Brian,

It's good to get helpful advice. You might be lucky and get just the right match. Without knowing you, I know that you are a thoughtful, insightful person who might do well by following your intuition about waiting two weeks to see what happens. It certainly could not hurt to take the two weeks, as long as you don't expose yourself to the offending noises that are particular for you. Or I could be wrong, and should instead say, "Do this, do that."

I live in a part of the country where TRT is not available within a healthy driving distance for me, meaning the travel would be more destructive than the therapy would be helpful. At least at this time.  I'm lucky though, as I had experience in pain management for many years. I read the TRT book, this website, other books and blogs available, and used other therapeutic techniques I have learned along the way in a very long career. One of the things I learned was tuning into my body and trusting my inner wisdom. 

I used pink noise without earbuds, softly playing on my old boom box, speakers on each side, but not up real close as my injuries caused me to be tactile defensive for a very long time. I was told by a neuromonics audiologist not to use anything with ear buds or headphones and I listened. She said neuromonics would not really help me. Though I was disappointed, I believed her. Bless her soul, she talked herself out of a nice chunk of change. I also used other sound therapies, other noises and sounds, finally working my way back into music that could soothe the savage beast---for real.
I was in one of my "I'm cured! stages while taking pain medications--How self delusional we become when we are desperate to be rid of this horrendous condition.) I visited a new friend for lunch. She forgot to tell me about her howling beagle. Nonstop.  Beagle is very distraught with visitors and my friend had neglected to tell me. I had brought my netbook along to share photos and experiences with my friend.  No headphones with me for just in case. I was so happy to be "cured."  I booted up my netbook, loaded "Whistle Down the Wind" sung by Andrea Ross, who has the gentlest voice of the Andrew Lloyd Weber divas. I did it to help myself relax into the offending sound. It had and still has the power to provide me both competing soothing sound with a beautiful verbal message. When I first began listening to this song, set in replay, I finally was able to cry out my unshed, stored up tears. For a month. Then finally it was just soothing, and I moved on to music a little more complex, with another message that made me cry or laugh.

 


I had put the music on for myself using the replay function, to keep me calm and nonresponsive to the howling beagle. But here was the biggest surprise: The beagle went over to the table, circled, lay down on the floor in the best place to listen, picked up one hind leg, and like a statue, went into a reverie that lasted until my friend begged me to turn it off.  Immediately, beagle began to howl. I left.

I don't know how you feel about politics, but there's a Youtube of Kristen Chenoweth on the Jay Leno show singing and acting a parody from Wicked. The song was "Popular." The words were re-written during the Anthony Wiener tweeting fiasco.  If you need a laugh and have a slightly deviated mind, you can adjust the volume to your comfort level.

It's a balancing act, and very often a catch-22.  Listen, learn as much as you can, and trust your inner wisdom. Remember, whatever you do, it's gradual re-exposure. If you think someone is going too fast for you, they probably are.  You are the one inhabiting your body.
I had a very painful emergency dental appointment this past week-end. Would have laid me out for maybe two months, even one year ago. No increase in H symptoms, which are much improved. No jaw pain. (amazing, you should see my radiology and surgeon's prognosis). Only a really high pitched, high decibel, shrieking T that has not been this bad for years. Went to my acupuncture doctor Monday. He knows what to do for T. Went to Home Depot today for two painful hours.(with headphones). No T tonight.

Best of luck,
Cheryl

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briann

Registered:
Posts: 141
Reply with quote  #5 
Hi Cheryl,

Thank you for the thoughtful reply. I find your ability to manage this condition inspirational. I believe you are right that it is a balancing act and that gradual re-exposure is key. 

What other sound therapies did you use before going back to music?

-Brian
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StringBean

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Posts: 40
Reply with quote  #6 
Briann,

I had the worst effects of hyperacusis when listening on headphones.

Then I listened to low-level pink noise on apple earbuds for 15 months, and today I work almost exclusively on cans. I strongly recommend you do TRT if you haven't already. There is something different about having the sound source close to the ear--I think it puts the healing process on steroids. When you can handle close sound then the outside becomes an afterthought.

I tend to listen a little loud on the headphones now. Your story will serve as a warning and I wish you luck.


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briann

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Posts: 141
Reply with quote  #7 
Hi Stringbean,

I will keep that in mind. maybe in a month or two ill be over my phoebia of very low volume headphone listening. please be careful and dont take your recovery for granted as i did. Music is so enjoyable that it can require much discipline to stay away from.

Thank you for sharing your experience.

-Brian
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Cheryl_K

Registered:
Posts: 101
Reply with quote  #8 
Hi Brian,

When I first began using headphones to deliver white noise, it was awful. I couldn't do it. So I began by turning the stereo boombox on very, very low and sitting right between the speakers, then, next time, holding the headphones together, on my lap, thennext time, not ON my ears, but above and below, on my scalp and on the nape of my neck. I was desensitizing myself to something that was causing me pain. If it causes you pain it is not necessarily a phobia, it is just something that is causing you pain. The normal, natural response is avoidance. Desensitization is how we work through our pain response.

Just writing this brought up a new level of T--not so bad though. Each one has his/her own pace and own path. I find that to be a comfort.
Cheryl
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Billymoe

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Posts: 69
Reply with quote  #9 
Hi Brian

Sounds like good advice from Cheryl. If you must use headphones, try using a pair of open air headphones. You don't want to block the outside noise around you. TRT works the same way.
There is a web site called mynoise.com which gives you the option of using white noise, pink noise or brown noise. White noise is the hardest on our yours because the emphasis is placed on the high frequencies. Brown noise is the opposite where the emphasis is placed on the low frequencies which makes it easier. Pink noise is somewhere in the middle. I just take my laptop and leave it on till I wake up. It's the high frequency area which is very tricky, for most people with Hyperacusis, around the 3- 4kz area.
         I also had a setback after 12 years. Why! Because I had to inch the volume up a little more.
I've looked at this forum almost every day since it started and see the same thing over and over again.
Someone went to a rock concert, something happened in the recording studio, someone played the radio in the car to loud. Its all about the music. Just letting off a little steam, right.
         If you go the way of TRT, General Hearing Instruments has generators which can switch to pink or white noise. If you watch TV often go to the equalizer  and lower the high end.
         Your probably wondering like me, will I recover again, we will. The key is avoiding further setbacks. Remember you have control over the volume.
         Let me know of your progress.

Bill M.
        
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briann

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Posts: 141
Reply with quote  #10 
Thank you both for your advice. I tried out a little pink noise yesterday just to see how it felt. I actually found it surprisingly soothing, at least at very low volumes and for a very short time. 

As for progress, each day the ceiling keeps dropping. The only day that it didn't was when I completely protected myself with earplugs and earmuffs and stayed in my apartment. Yesterday, I tried to wean off using earplugs in my apartment. It felt OK for a while. But as usual, there is often a delay in consequences. Going to bed I was not simply in pain. With earplugs and earmuffs, I was irritated by every little noise no matter how mild or for how short a period of time. This irritation at everything was new to me and a clear sign that this was the real threshold limit and a further reduction in quality of life. Before I was assuming it couldn't get worse. Now I don't know where the bottom is and how bad it will be. I really appreciate everyones help and suggestions. I will try noise therapy. I just don't know how not to collapse my thresholds further.
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kdevore

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Posts: 29
Reply with quote  #11 
Hi Briann,

I'm so sorry that you are experiencing this setback. I know the word "setback" does not do justice to your current experience. 

I have had a very similar experience with hyperacusis. The initial onset for me was in October of 1995 after a huge amount of headphone use within a short period of time, including a seemingly minor electric shock in the ear when recording on a 4 track recorder with headphones.  I was 25 at the time.  My symptons were similar to yours.  First, irritation at certain sounds.  Then, everything seemed loud, from normal voices to the TV to the shower to road noise.  I could not talk on the phone without pain and could not listen to any music without pain.  My hopes for a career in the music business ere shattered and I became depressed. 

The good news is that I slowly improved in time (without the use of TRT or other sound therapy).  It took 6 months or more for the improvement to occur.  After 12 months or so, I started going to quiet restaurants.  The TV did not bother me as much.  Improvement continued.   3-4 years later, I went on a plane for the first time since onset.  Then, I saw my first movie (Blair Witch Project) and I was ok.  I started listening to music again and playing a little guitar.  I never recovered the way you did, but my quality of life was acceptable to me.


Fast forward to 2005 - At that point, I was seeing movies with earplugs (with the exception of action movies).  I got ambitious and went to see Lord of the Rings (with earplugs and earmuffs).  It was way too loud and I stayed too long. After an hour of this noise abuse, I finally got out of there.  But, my severe hyperacusis was back.  Normal voices bothered me, the shower bothered me, lots of lasting ear pain.  The good news - After a few months or so, my tolerances slowly improved.  They never got back to my pre-Lord of the Rings tolerances, but they got pretty close and I was okay with my quality of life.  Note that I tried TRT therapy at that time, but was not able to tolerate it. I would repeatedly get a burning sensation in my right ear even at the lowest possible volume.  I only tried it for a month or so, because it felt like it was hindering my progress rather than helping it and I could not tolerate the burning sensation in my right ear.  

Fast forward to August/September 2011 -  My ears were feeling pretty good and I thought I could tolerate a trip to New York City (with ear protection) with my Dad to see the US Open tennis tournament.  I had seen several professional tennis matches (with ear protection) without a problem.  Several things went wrong to set me up for an ear diseaster.  First, my assistant did not book me in the front of the airplane and I ended up with a seat at the rear of the plane. Unfortunately, there was a terrible vibration in the window that was hurting my right ear.  I tried to switch seats, but it was a full plane.  I even offered to pay someone to switch seats without avail. When I got to New York by ears were definitely compromised.  They seemed to recover though, until I went out to eat at a restaurant that was too loud.  Then, there were the NY fire engines (ridiculously loud).  I came back from that trip with my ears feeling tired; however, within a few days, I felt like I was back to baseline.  Then, (and I can't believe I did this), I got tickets to see some live music.  It was an outdoor arena and I thought the band (Ray LaMontagne, who I was a huge fan of) was going to be pretty mellow.  Although I had earplugs and Bose headphones (not industrial strength ear muffs like I should have), it was too loud and turned out to be the breaking point.  My hyperacusis is worse than it was at the initial onset in 1995 and I have only experienced very mild improvement since.

I did try TRT therapy in October/November 2011, but continued to get a burning sensation in my right ear after only a few minutes of using the devices.  I tried the therapy off and on for several months, but could not tolerate it.  Part of the problem was that I continued to work and I had trouble tolerating the phone and ordinary conversations.  I have my own law practice and I could not take major time off with out the business really sufferring  I am now giving TRT another try.  This time, I have customized the devices so that the high frequency is capped at 2000 Hz.  I can now tolerate the devices at very low volume for a limited period of time (30-60 minutes).  I'm going to try to gradually increase my time usage, the frequency, and decible level, but I have to move very slowly in order to avoid setbacks.  Also, I continue to work and invetibably have setbacks in that arena.

THE GOOD NEWS: I did recover after my major setback in 2005.  I believe you can recover too.

However, I echo your warning to others with hyperacusis.  You never appreciate what you have until it's gone.  My level of hyperacusis pre Sep 2011, was tolerable and I felt I had real quality of life.  Since then, it has been a huge challenge both mentally and physically.  For a long time, I would beat myself up over the reckless decision that I made (i.e., not insisting to switch seats on the NY plane ride, staying at the loud restaurant too long, going to the concert (and not leaving right away).  I only beat myself up occasionally now.  Try not to beat
 yourself up as it is counterproductive. Your human like me and your love for music is probably pretty powerful.

Here is what gives me hope:

(1) I (and many people) have recovered before from major setbacks before (some using TRT therapy and some without it).

(2) Sound therapy has helped many people and I'm going to continue to use the TRT devices, provided they do not cause me pain.  

(3) Given that there is no cure to Hyperacusis and that the hyperacusic ear is likely to be prone to setbacks in the future, scientific research is necessary to develop a real understanding of the mechanism that underlies hyperacusis and potentially a cure.  I have had the opportunity to get to know Bryan Pollard, the founder of Hyperacusis Research.  He is an inspriation.  He is working tirelessly to connect the top researchers in the field, to spur additional scientific research and move our understanding of Hypercusis forward.  I truly believe there will be breakthroughs soon.

Try to stay positive, Briann. You will get through this. Many people have experienced what you are going through and have improved their tolerances.

Ken











__________________
Ken Devore
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Cheryl_K

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Posts: 101
Reply with quote  #12 
Thank you, Ken, for liking my ideas. I am just as much in the dark as so many of us, trying to figure things out on a day-to-day basis. I had a setback on Weds, and it's pretty much over now, even with a major toothache.

I have accustomed myself to natural noises by desensitization (a process I will explain soon). I don't need the pink noise (I don't know why I write "white" in a previous post.

I have 2 ceiling fans in my house. It took awhile to get used to them again, but now they behave like pink noise for me. I can even watch them spinning. I actually love the sound, as I do heavy rain on the roof, and shower water cascading over my head. My son just vacuumed. I went into my room so as not to hear it, but, without headphones, the sound came through. I did my quick short-cut desensitization, and almost liked the sound.

Could it be just time? Or is time combined with the will to heal, to protect our ears when necessary, and not to protect in gradual, incremental doses? Whatever it is, I believe there is more than one path to healing, especially for those of us who are Category 4, with the worst prognosis.

Best,
Cheryl
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briann

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Posts: 141
Reply with quote  #13 
Hi Ken,

It looks like our first experience with H was quite similar. Thank you so much for your story and experiences. It does give me hope that you have been able to recover (and are on track for your next recovery) and comfort that there is some research actively looking into this. After reading the feedback from all of you thoughtful people  and receiving much support from family, I do feel a little more prepared to face the tough times ahead. Thank you for your help.

Hi Cheryl

You'll have to share this desensitization trick [smile]

-Brian
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Cheryl_K

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Posts: 101
Reply with quote  #14 

Thanks for asking. I would love to share. I'm working on it.  I've been doing research for the past few years, but it's been slow. You know how T and H can drain a person. 

I had to be sure that I was on the right track, or should I say, one of the possible paths to recovery before I shared my approaches.

I'm getting ready to write. I don't know how long it is going to take.

That's the best I can do right now. If I had my way, I would have shared this information years ago, but first I had to be sure, and feel well enough to write about what I've been doing.

That's the best I can do right now, other than to make the following suggestion:

Find a cognitive-behavioral therapist who specializes in pain management and knows systematic desensitization, and who is willing to do his or her due diligence in learning how to treat H and T. If someone says something like, "Oh, I get it. You're agorap[hobic," do not even try to explain. Try to find someone else. Bring a book, or a print out of the brochure from this website. See if they are motivated to learn more.

You've asked me to describe a complex process. I plan to do that. But it will take time.

Best,
Cheryl


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bboyjkang

Registered:
Posts: 16
Reply with quote  #15 
I just posted something in the hyperacusis Facebook support group in response to a question.
It might be relevant.

Quote:
HI, I am worrying that this Hyperacusis is going to get worse. Can anyone tell me, is it progressive? Does it disable us all eventually, or can it stay relatively the same? It's been so much worse since I have the hearing test that diagnosed it. Usually my ears are not bad in the morning, but get worse as the day goes on (depending on noise levels), but this morning it has been bad from the moment I opened my eyes.


Quote:
After recovery to a large extent from the pink noise CD from the hyperacusis network, I had one big relapse, and I thought I was screwed.
I slowly recovered again with the pink noise (be careful about stochastic resonance, where you set the pink noise sound to be so low that your ears strain to hear it.
Before the recovery, it was actually getting more sensitive.)
It’s manageable today, but if there is some sustained loud noise, I can feel the sensitivity come back.
After a day or so with the pink noise, I’m okay again (not 100%, but I can handle it).

The fact that I can relapse to lower than I’ve ever been, go back to higher than I’ve ever been, get sensitivity, lose sensitivity, etc. makes me think that it’s more neurological than physical, and it’s not degenerative (I hope).


Quote:
I imagine these symptoms are more severe than most which makes me wonder if the baseline is too low for any sort of recovery


A long time ago, I remember reading about fullness in the ears as a hyperacusis symptom.
It was supposedly like being on an airplane.
When I first had hyperacusis, I never experienced that

After, I think, a year and a half, I was recovering very well.
I didn’t read the instructions that say that you’re not supposed to listen to the pink noise.
I raised it louder and louder over time, and it was so loud that it would drown out normal noise.
Whenever I had a tiny relapse into extra sensitivity, I would feel a longing to hear more pink noise.
It would feel good to raise the pink noise volume very high for a few minutes.
There was one time where I got a tiny relapse, and I listened to pink noise at max volume for an extended period of time.
I actually got my first huge relapse from listening to pink noise.

In this relapse, it was absolutely the worst experience of hyperacusis that I had ever had.
I was getting the fullness.
Birds chirping in the morning would hurt.
A distant bark from a neighbor’s dog would hurt.
Chewing carrots would hurt.
Even the TV on mute would hurt.
Worst of all, the pink noise on the lowest sound would hurt.

That is when I read the instructions, and realized that I had missed another extremely important bit of information: stochastic resonance.
If you set the pink noise too low, your ears will strain to hear it (correct?).

Anyways, I immediately bumped up the volume to where I could reasonably hear it.
From there, I retrained for the second time.

(I’m going to make another post in the future, but I want to mention that the positioning of the pink noise audio, and other sounds personally affects the hyperacusis.
I have way more hyperacusis in my left ear, and I like to have sounds coming from the left side of my head, and behind me.
I made a post a long time ago mentioning how I bought some portable speakers to position the audio right.
I don’t know if anyone else experiences hyperacusis like that.).

As of today, I have the pink noise set to where I don’t notice it, but if I go to the audio player, and press pause, you can immediately notice the difference.
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briann

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Posts: 141
Reply with quote  #16 
Thanks Cheryl. Keep us posted.

bboyjkang,

Thanks for your feedback. It is a delicate balance between too much and to little noise exposure. I'm still working on that myself. I see how the pink noise allows you to control that a bit better. I'll surely be giving that a try soon. 

-Brian
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bboyjkang

Registered:
Posts: 16
Reply with quote  #17 
Oh, I actually assumed that you were using the pink noise the first time that you recovered.
Yeah, when it first happened, I noticed that I really longed for certain types of noises, like the sound of a running computer, or running water coming from a certain angle.
That was what convinced me that exposing myself to a certain type of noise, like pink noise, could help.

Good luck.
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