The Hyperacusis Network Message Board
Sign up Latest Topics
 
 
 


Reply
  Author   Comment  
anniekin

Registered:
Posts: 105
Reply with quote  #1 
I am curious. For those of you diagnosed with hyperacusis who have done TRT for hyperacusis with an audiologist trained in it, how long did it take before you experienced any significant improvement? I have been doing the white/pink noise listening thing and have not had much progress yet in my 14 months of treatment. I listen to the sound 6 to 8 hours a day as my audiologist advised me to do, and I try to expose myself to environmental sound like music/TV, being outdoors, etc. 6 months in I had one LDL test that showed 5 decibels of improvement, which is not enough for me to be able to tell any difference in real life. I started the TRT about 5 months after my hyperacusis started. I also have mild tinnitus also arising from the noise injury, which has not changed, but I don't care as much about that, the hyperacusis is what has sucked the joy out of my life. My LDLs are in the 40's/50's. Many aspects of my life are still severely compromised. I use hearing protection, everything from regular earplugs to Bose headphones for really loud things, but do not believe I am over-using. 

My audiologist says she has known people to take as long as 2 years to respond to TRT. So I try to tell myself that it could still work. But lately I am less inclined to believe it. I still do what I am supposed to do, but am in a low period in terms of faith in things working out.

Feeling very discouraged at the moment. I need some hope, a pep talk or reality check or something. I welcome any comments!! Despite much research I have not had any success finding a local support group. Apparently people with hyperacusis don't go out much! This forum is the only place I know of where people might understand what I am talking about.

Thanks! 
Anniekin

0
t9jorda

Registered:
Posts: 6
Reply with quote  #2 
Hi there, 

You have asked a very thoughtful question, and I want to give you something to think about.

The hearing retraining program purpose is to literally retrain your brain to how it hears/processes sound.  If you are only exposing this retraining to your brain for 1/4 to 1/3 of your day... you are not gaining the full hearing retraining process.

The retraining needs to be a 24 hour process for many many months.  There are many ways to achieve this.  Wearing the sound aids for all your waking hours, and then having white noise play while you are sleeping (i.e. the app Relax Melodies, or a fan on low, etc.) on  are just one example.  Your body needs to be surrounded by comforting sound (white noise, bird chirps, ocean waves, whatever works that calms you)

The use of earplugs etc. should only be reserved for special times, ie. if you must go to a football game.  Otherwise, the earplugs need to stay out, as when you wear them you ears become "hyper" sensitive to sound all over again.  

I did what you are doing for years, with little results, until a lovely Ears Nose and Throat Dr. explained the science and mechanics of what I was and was not doing.

For me I found that the sound for retraining didn't have to be loud at all, we have had better results at a lower sound point.  We have also had better results with one ear piece being at one level, and the other at another.  Loud does not equal better, exposure and constancy is what has helped.

I hope this information helps to take you another step forward.  

Best wishes.

P.S. I am only on these boards once or twice a year...just to have a quick boo to see if something new or exciting has been developed.





0
janeygirl

Registered:
Posts: 143
Reply with quote  #3 
TRT cured me. After ten years of suffering and my life changing completely as all of ours do with Hyperacusis, I tried all sorts of things. But I finally made the decision to get the help I needed. I knew of the University of Baltimore's program and so decided on that. I do not know they do this anymore as this was years ago but I flew one day, did the full day appointment the next and flew back the next.

IF done correctly (3 components: the generators, the listening of non lyrical music as prescribed and increased by your Practitioner and cognitive behavioral therapy (fear of sound etc.), for me, I noticed a change right away. The generators and listening to the music at my desk really helped give me the confidence, you go into both of these things slowly and build. The CBC was terrific. I went into TRT prepared to think that if I got a 15% improvement, I would be happy so my expectations were low. I graduated in about a year and a half but I had seen MUCH improvement many months beforehand. I selected a TRT trained person to do the follow-up for me vs. go to Maryland. I still have a loudness tolerance test every year as that's pretty much how I track my progress even years later. The Tinnitis Association can help and so can Dan Malcore and others here on helping you identify a good TRT person. The caveat though is you may need to call a few offices to find out where they got their training and is this something they do frequently, if not, pass and go to someone else. I used someone who had been trained with Jastreboff. I wish I would have done it sooner, I would have saved ten years of my life!

__________________
Jane Parks-McKay
0
Aplomado

Registered:
Posts: 711
Reply with quote  #4 
The first time I did TRT with an audiologist, I recovered 98% in six months.

I had a bad relapase and recovery has been much much slower.
0
StringBean

Registered:
Posts: 40
Reply with quote  #5 
Continuous (24 hrs/day) low-level pink noise will start to see the first glimpse of improvement in 6 months and drastic improvement months 9-12.

6-8 hours a day is not enough. You must live with pink noise for 15-18 months. Silence is your enemy.
0
Aplomado

Registered:
Posts: 711
Reply with quote  #6 
Anniekin, I assume you are wearing sound generators?
0
anniekin

Registered:
Posts: 105
Reply with quote  #7 
Quote:
Originally Posted by Aplomado
Anniekin, I assume you are wearing sound generators?


Yes I am wearing sound generators. I also have music or TV on most of the time at home, and run a fan at night in the bedroom unless it is too cold for that. I am not in silence much except for some nights when I am sleeping. My LDLs 2 months after my injury put me in the "severe" category of hyperacusis.

I am a musician, not professionally, but it is my biggest passion, so I have continued to play, more quietly, and go to small concerts with earplugs in. Music is one area I am willing to experiment with, that is, listening at levels louder than my usual perceived tolerance. I have never had a setback, all that happens is my tinnitus gets temporarily worse if I am around loud sound. I get tired and stressed feeling from unwanted loud sound. My tinnitus is mild and is not a big concern. My hearing loss is mild to moderate and less of a concern than the hyperacusis. H has isolated me from so many activities and people that I love. I try to do things I used to do as much as possible, but the joy is not there. 

After doing the 6 to 8 hours/day of white noise for 6 months, I tested as having about 5 decibels of improvement - barely noticeable in day to day life. Have not had LDLs tested since then, but I will in the next couple months.  The things I cannot tolerate are playing (acoustic) music in my usual small groups I used to be involved in, being at dinners or parties, being around people with loud speaking voices, being around large groups such as audiences before and after shows where everyone is talking at once, the noise of car tires on the road when in the car, being in stores, restaurants, and then of course the usual too-loud stuff everyone hates like airplanes and motorcycles and leaf blowers etc. 

 I am working with an experienced trained Jastreboff audiologist. I have been in TRT treatment now for 14 months. I started 5 months after my injury. At my initial ENT and audiology visits after the injury, docs and an audiologist who may not have known much about hyperacusis gave me the "your ears are damaged, ear nerves don't regenerate, there is nothing we can do" hopeless-sounding prognosis. The H word was not used. When I pressed for information, I was told H treatment was not "evidence based". Not being willing to settle for a doomed prognosis, I researched treatment and figured out I probably had acoustic shock or hyperacusis, and then found the audiologist I am working with. 

I have thought about doing Rob's sound protocol just to try something different but have been interrupted by travel etc and have not done so yet. I also wanted to get more input about others' experiencea. By coincidence my parents's audiologist in their home in CT (Natan Bauman) is a man who knows the Jastreboff stuff and I am planning to seek out his input at some point as well.

I do understand that everyone responds at different speeds and to different approaches, and so I wanted to hear other stories. 

I always wonder how other people deal with their diminished social lives, and all the other emotional losses that go with this. I feel I am going through grief and/or battling depression on some level at all times because of what this loss means to me as a social and musical person. I have my doubts as to what cognitive therapy can do for that, since it is based on a real loss. I don't feel I am any more sound phobic than anyone in my condition would be. I don't believe I am overprotecting my ears. I think I am doing the treatment as advised and it does not appear to be working much--yet. That one word holds all my hope!

Thanks for your interest.
Anniekin



  



0
Rob

Registered:
Posts: 4,049
Reply with quote  #8 
anniekin -

I'm sorry you are having such a difficult time.  You are right to want and expect more than a 5 dB improvement in your LDLs.  In my opinion, cognitive therapy for someone with LDLs in the 40s and 50s will not help to treat hyperacusis.  I agree with your clinician that it can sometimes take a long time for some hyperacusics to see noticeable improvement.  At the same time, I am a big believer in making adjustments or additions to one's approach when it is called for -- and this is one of those times.  I am glad you feel some hope, even if it is tenuous. 

Can you say a bit about how you developed hyperacusis and the make and model of the wearable generators you use?  Can you also say more about the types of situations where you wear hearing protection or Bose noise reduction headphones and how often you use hearing protection?      

Rob 
0
anniekin

Registered:
Posts: 105
Reply with quote  #9 
Quote:
Originally Posted by Rob
anniekin -

I'm sorry you are having such a difficult time.  You are right to want and expect more than a 5 dB improvement in your LDLs.  In my opinion, cognitive therapy for someone with LDLs in the 40s and 50s will not help to treat hyperacusis.  I agree with your clinician that it can sometimes take a long time for some hyperacusics to see noticeable improvement.  At the same time, I am a big believer in making adjustments or additions to one's approach when it is called for -- and this is one of those times.  I am glad you feel some hope, even if it is tenuous. 

Can you say a bit about how you developed hyperacusis and the make and model of the wearable generators you use?  Can you also say more about the types of situations where you wear hearing protection or Bose noise reduction headphones and how often you use hearing protection?      

Rob 
Hi Rob,
What happened to me is extremely weird. Some unsupervised young kids in our neighborhood chose our house at random, and put this commercial "prank toy" thing called a fart bomb inside an envelope on our front porch by the door, rang the bell and ran away. Unaware of what they were up to, I went to the door and picked up the envelope, opened it and took the thing out to see what it was and to read the label on it, and as I had it close to my face to read it, it blew up inches from my face (and ears). At the time I was standing in our front hallway, which is only 4 feet wide, so the sound came right back at me from both sides. Instant hyperacusis, hearing loss, and tinnitus. (These "toys" are banned in some countries because they can explode as loud as 140 decibels. They have no warnings on them. They are activated by rubbing them which releases water inside the mylar bag to mix with a sulfurous chemical, which then causes a smelly "fart" explosion soon after. No fire or heat involved in the explosion).

My hearing loss is bilateral, almost the same in each ear, moderate loss in the middle frequencies in a "cookie bite" pattern, actually it looks like a deep dive down to 55 and back up to 0 between 500 to 2000 on the audiogram, with normal hearing in the lower and higher frequencies up to 8000. I did not have broken eardrums, I have no fluttering noises, dizziness, pain, or other things that some people talk about. My tinnitus sounds like a distant rattling sound, like the way our dehumidifier sounds. It gets more intense and higher pitched after I am around loud noise or music but settles down later. The tinnitus has not changed at all since i have been doing the TRT. I have gotten used to it mostly, not that I like it, but it is nothing compared to the H.

The ENT I saw a few days after the injury tried to tell me it was a congenital hearing loss, and that since the hearing loss wasn't the more typical noise injury high frequency range, my audiogram did not "prove" noise injury. But I can tell you with complete confidence, and others around can confirm that my hearing was great before, and now it is not. I mis-hear stuff people say all the time, but with my H in the picture hearing aids cannot yet be used at a level of amplification that would help me hear people. The hearing loss is annoying, but at this point I would happily just get used to saying "what?" the rest of my life if the H would just go away! Socially it is WAY more acceptable and easy to ask people to speak up than to ask them to pipe down. 

The sound generators I use are called Quell, the company is amplisound. I could not find a model number. As advised, I use them at a volume that is comfortable to me, which has not changed very much in the time I have used them. I sometimes turn them up temporarily in louder situations. I also listen to music and tv and radio at home and run a fan at night sometimes. I walk outside in a park or quiet streets with no earplugs. 

I use Bose noise canceling earbuds, which despite advertising claims do not block nearly as much sound as the headphones, in the following situations: grocery stores or any other loud/large stores, riding in our car at speeds over about 25 mph when tire noise becomes tiring to hear for long, at some social gatherings where people will be loud, in restaurants, although I go to them very infrequently, and at (infrequent) acoustic music concerts where the volume is too loud for me, and when walking on busy loud city streets. At home I never wear the Bose devices unless I am vacuuming or something, which I also do infrequently for other reasons(!). The above situations where I am under Bose earbuds would usually not involve more time than an hour or two at most in any given day. The rest of the time I try to listen to something on purpose at a comfortable level, of in the case of music, at a slightly louder volume.

I use Bose headphones only in extreme situations like 7 hours of cross-country flight time, and 4 hours at a time at a music festival with a large audience of people singing and clapping all around me. My impression from reading the chats here is that I am still trying to do a lot more things than many people with severe H despite my discomforts and frustrations, because I cannot stand to become a total recluse. Still, compared to my previous life I certainly feel isolated.

My hearing distortions and H are a considerable obstacle when I play music, there is a delay when am not able to perceive what used to be instantaneous for me, and if I am trying to play with others, I either cannot hear myself or cannot hear them, and I cannot perceive the volume or tone of my playing accurately. There are no earplugs that work for me when playing music, so I have to play with only one other person where I can tolerate their playing volume. I do have custom earplugs which were highly recommended by other audiologists for people with H, and I hate them. Bose earplugs are much more workable, comfortable, and easy to adjust on my ears as volume changes around me. So on balance I am listening to real world sound around me and in my home several more hours of the day than I am under any kind of noise protection. The only days I don't get my 8 hours of white noise are days when I am around something so loud that I have no choice but to have the Bose earbuds in my ears instead, like travel or music events or other large crowd situations. 

Some time when you feel like writing about it I would be interested in your experience too.
Anniekin


0
Heatherbelle

Registered:
Posts: 8
Reply with quote  #10 
I am very interested in this thread as I just started using sound generators 2 weeks ago. I too have problems with people with loud voices, more than one conversation at a time in my vicinity, the usual loud sounds, the sound of car tires while driving, and for me, the sound of water while taking a shower can be difficult. Restaurants,concerts, movies, basically anywhere where people gather, I avoid including family dinners etc.

I had my follow-up visit today and love my audiologist. She says it is teamwork that is going to make a difference and we've even scheduled a phone appointment next time to avoid the hour drive to her clinic. I've been asked to wear the sound generators for 8 hours per day and use a bedside Bluetooth sound generator while sleeping, so that is two-thirds of my day for now. I normally keep the t.v. on so I'm never in silence.

It has been more difficult than I expected - I'm exhausted by the noise generators and have had daily headaches ( my hyperaccusis was caused by 2 concussions so I've been having headache issues for some time) but I'm perservering because I know it's important, and it will get easier.

I wish you well and hope that things improve for you!

0
Rob

Registered:
Posts: 4,049
Reply with quote  #11 
Proud of you, Heatherbelle.  Things will get easier in time.  

About those headaches, how loud are the generators?  Can you hear clearly hear sounds in your immediate environment as well as what folks are saying?  

Rob
0
anniekin

Registered:
Posts: 105
Reply with quote  #12 
Quote:
Originally Posted by Rob
anniekin -

I'm sorry you are having such a difficult time.  You are right to want and expect more than a 5 dB improvement in your LDLs.  In my opinion, cognitive therapy for someone with LDLs in the 40s and 50s will not help to treat hyperacusis.  I agree with your clinician that it can sometimes take a long time for some hyperacusics to see noticeable improvement.  At the same time, I am a big believer in making adjustments or additions to one's approach when it is called for -- and this is one of those times.  I am glad you feel some hope, even if it is tenuous. 

Can you say a bit about how you developed hyperacusis and the make and model of the wearable generators you use?  Can you also say more about the types of situations where you wear hearing protection or Bose noise reduction headphones and how often you use hearing protection?      

Rob 
Hi Rob,
Did you get a chance to see in this thread that I answered your questions about how I got H and about the sound generators I use? I am eager to know if you have any further response. Anything could help.
Thanks,
Annie
0
Rob

Registered:
Posts: 4,049
Reply with quote  #13 
Annie -

I saw your post and I'm thinking through what you wrote before I respond.  I'm really sorry this happened to you.  Exposure to a loud, sudden sound with a high rise time is one of the classic ways to develop hyperacusis.  Based on your answers, I am positive there are steps you can take to improve your sound tolerance. 

One more question.  Did your doctor rule out recruitment?

Rob     
0
anniekin

Registered:
Posts: 105
Reply with quote  #14 
Quote:
Originally Posted by Rob
Annie -

I saw your post and I'm thinking through what you wrote before I respond.  I'm really sorry this happened to you.  Exposure to a loud, sudden sound with a high rise time is one of the classic ways to develop hyperacusis.  Based on your answers, I am positive there are steps you can take to improve your sound tolerance. 

One more question.  Did your doctor rule out recruitment?

Rob     

The first 2 ENTs I saw immediately after the injury I did not speak of recruitment, or hyperacusis, they just talked about the damage and whether it was 100%  sensorineural or not (they thought it was), how ear nerves are unable to regenerate, and how the brain in its plasticity would try, with or without success, to make a way for me to recover if the steroids they gave me didn't work (they didn't). That was it.

The audiologist who saw me in connection with those appointments had more opinions, she said she thought basically nothing would help me, not hearing aids, not any kind of treatment, and that it was ALL recruitment. She also ultimately admitted to a personal bias against the TRT program and the audiologist I ended up seeing for my H diagnosis and treatment. These ENTs did not talk about hyperacusis at all, and their audiologist even told me they were not allowed to refer to people who treat hyperacusis because the treatments were not "evidence based". This was Kaiser, which is quite rigid about what they will acknowledge, and it seems they will sometimes not mention a diagnosis if the treatment for it is something they do not offer or approve of.

Since I was being given a pretty hopeless diagnosis heavily tainted by health insurance industry politics and policies, I did my own research. From what I read, what I was experiencing sounded much more like hyperacusis than recruitment, and I was told by my current audiologist that people with milder hearing loss don't usually have recruitment. I had a new set of hearing tests that included loudness tolerances which were in the 50s. I decided to go with the hyperacusis dx because it fit with my own impressions and it was considered to be treatable and offered the only avenue of hope.

Since then even as I wonder if recruitment could be involved at all, no one has ever suggested that it was even possible to definitively rule out recruitment or tease apart what is recruitment and what is hyperacusis, should someone have both going on. I would say that no professional I saw seems to be to be truly neutral in their assessments because they are predisposed to believe one thing or another. 
Annie
0
Heatherbelle

Registered:
Posts: 8
Reply with quote  #15 
Quote:
Originally Posted by Rob
Proud of you, Heatherbelle.  Things will get easier in time.  

About those headaches, how loud are the generators?  Can you hear clearly hear sounds in your immediate environment as well as what folks are saying?  

Rob

Rob
Yes, my noise generators are set fairly low - when I started with them she set them lower at my request because they were interfering with my ability to focus on someone talking to me. After 2 weeks she turned them up slightly. For the most part they aren't really bothersome but I'm just so exhausted at the end of the day I can't wait to take them out. My headaches have often been triggered by noise - a trip to the mall or other place that can be too stimulating. I just have to be patient. My audiologist was a bit overly optimistic at first - things are a little bit more complex than I think she realized with the headaches, light sensitivity etc....the other remnants of issues from the concussions. I also have to temper my expectations and realize that the TNT may help the noise sensitivity but it's not going to fix everything. I just want to be able to go back to work and be social again. Crossing my fingers!
0
anniekin

Registered:
Posts: 105
Reply with quote  #16 
Quote:
Originally Posted by Heatherbelle
Rob Yes, my noise generators are set fairly low - when I started with them she set them lower at my request because they were interfering with my ability to focus on someone talking to me. After 2 weeks she turned them up slightly. For the most part they aren't really bothersome but I'm just so exhausted at the end of the day I can't wait to take them out. My headaches have often been triggered by noise - a trip to the mall or other place that can be too stimulating. I just have to be patient. My audiologist was a bit overly optimistic at first - things are a little bit more complex than I think she realized with the headaches, light sensitivity etc....the other remnants of issues from the concussions. I also have to temper my expectations and realize that the TNT may help the noise sensitivity but it's not going to fix everything. I just want to be able to go back to work and be social again. Crossing my fingers!


Hi Heatherbelle,

My audiologist told me to set the volume on my sound generators by running some water in the sink or something similar in volume, and adjust them so that I could hear the sound above that. I do find that I am not hearing some speech as accurately when I have the noise generators on, need to turn up the TV, etc, and part of that is because I have hearing loss in the middle frequencies, but bottom line the volume level has to be not irritating to me. I was told that it was very important that they not be uncomfortable or else the treatment kind of backfires, you don't want it stressing you out for hours of every day, you are trying to gently get your brain to change and stress doesn't help.

I don't know what kind of sound generators you are using but I can adjust the volume on mine myself, which has made it all workable for me.  I still don't adjust them very often but it is handy to be able to turn them up in a louder environment for the distraction value. Sounds like yours are being adjusted by your audiologist, so are they part of a hearing aid?

I am sympathizing with what you say about just wanting to be social again. It really is totally weird and scary to be forced to withdraw from your world and not know when you can return. I have worked hard on finding people who are willing to hang out with me in any environment that doesn't make sound louder, remembering what activities I can still do with people, often outdoor things out in nature are quieter. I wish I knew people here where I live (Portland OR) who have H who I could talk to about how they are managing their lives during the long wait to get better. I feel like I am perpetually in limbo. Unlike some other conditions, it is not easy at all to find an in-person support group.

If you are willing to talk about this, how do you emotionally manage the losses that go along with your condition?
Anniekin


0
Rob

Registered:
Posts: 4,049
Reply with quote  #17 

Annie –  

I appreciate how you feel a sense of ongoing grief and depression over this loss.        

Your audiologist should know how to test you for recruitment even if your hearing loss is virtually the same in both ears.  I would ask your clinician to test/evaluate you for recruitment as soon as possible.  It is important to be sure about what you are dealing with; the treatment for hyperacusis is not effective for people with recruitment. 

The way you were exposed to extremely loud and sudden sound often causes noise injury.  You have your own experience to support this.  No one knows better than you that your hearing was fine prior to the exposure to the explosion and that your hearing has been affected. 

I would wean yourself off using noise cancellation headphones in grocery stores, when driving, and when walking on city streets.  I think this could be interfering with your progress.  Try to find restaurants and other settings where you are comfortable and sound doesn’t hurt to hear.   

You mentioned that you have custom earplugs.  Did your audiologist take a mold?  Musician’s earplugs typically improve one’s ability to play music with others, and to hear your own playing and theirs.      

I think my music protocol could be helpful to you, partly because you feel less anxious about working with music and more comfortable around it.

Rob

0
anniekin

Registered:
Posts: 105
Reply with quote  #18 
Rob, thanks for your thoughts and support.

What I read about musician's custom earplugs initially made me very hopeful, but my experience with custom musician's earplugs has been that they are uncomfortable in my ears, despite even having had the molds redone. I would give it more time to adjust if it weren't for the fact that I cannot hear clearly enough with them to play with other people, using any of the filters. I also cannot hear my own playing well enough, which is a problem because we learn and play all the music by ear in old time and bluegrass music circles. It works better to have ear protection I can easily and quickly move on or off, or in and out of my ears when things get too loud or I can't hear enough. This is why I have used the Bose earbuds and headphones, it allows me that flexibility. I don't play in groups hardly at all anymore, they are just too loud and the sound becomes too much of a blur. After about an hour, high pitches like fiddles and flutes start to split into two tones, that is the sign that my ears have gotten overwhelmed and it is time to quit.

In all this time I have not found a single restaurant that was quiet enough to be in without some sort of ear protection. Every kind of noise there is in a restaurant is the kind of noise that is hard for me--voices, kitchen noises, scraping chairs. It surprises me that anyone with severe hyperacusis could find a restaurant they can be in. It seems to have gone out of fashion for restaurants to have anything to absorb sound. I look for outdoor seating if I am going to be going out, that usually works easier, at least during 3 months of the year. The background noise makes understanding people difficult because my hearing loss affects hearing speech, so conversing is exhausting if it is loud. Really it starts to seem pointless to be there.

I do gauge the noise level in stores and go with open ears into quieter places. With road noise I keep trying to increase the speed I can tolerate, at this point I am up to about 30 mph (from 20) before road noise gets intolerable. If I lived someplace with smooth pavement it would be a whole different story, I might be able to go without, but our roads are rough and our car is not the quietest.

I will ask about the recruitment test when I go in next time to see my audiologist. If I knew what the test was, I might be able to remember someone doing it during my initial exams. Can anyone help me with a description of how they test for recruitment when your ears have the same hearing loss?

It is good to be clear that TRT does not work where recruitment is concerned. But can your brain adapt and help in another way? And if I have both, can the recruitment actually keep TRT from working for the hyperacusis part of my problem? I just keep thinking that I have never heard someone with mild to moderate hearing loss with recruitment talk about their lives being turned upside down by loudness in that way that hyperacusis people do. 

I agree that music is the thing I am most able to challenge myself with. I do periodically listen to things at a volume louder than comfortable. It makes my tinnitus worse but so far, not for that long. I am clear that I would need to do something more systematic than what I have done thus far. Out of curiosity and desperation, a few months go I purchased a program involving music and nature sounds over the internet that I listened to as directed over a couple weeks. It was touted as working fabulously for tinnitus and sound sensitivity and did absolutely nothing for me, luckily I DID get my money back! I would try your program next.

I will keep you all posted on further developments-
Anniekin






0
Rob

Registered:
Posts: 4,049
Reply with quote  #19 
Anniekin - 

My experience of musician's earplugs is that I hear everything very clearly, just quieter.  Since you can achieve that by wearing the Bose earbuds/headphones, that is the right approach to take.   

When I was really struggling, I found one restaurant with very high ceilings where I was comfortable.  It was tough going in many other settings.  The more I could get out in the world, the better.  I did my best to spend time in settings I could handle.  There was no way to avoid exposure to sounds that resulted in my feeling physical pain.  I opted to do my best in those settings, rather than isolate myself.  So, I went to work.  It wasn't easy, but I'm glad I did.  Psychologically, it was important for me to do so.

Adding the music protocol to your routine may help you improve your tolerance of sound, including road noise.  From what you have written, my sense is that you are describing hyperacusis.  I'm just suggesting your audiologist rule recruitment in or out.  

Rob
0
anniekin

Registered:
Posts: 105
Reply with quote  #20 
Quote:
Originally Posted by Rob
Anniekin - 

My experience of musician's earplugs is that I hear everything very clearly, just quieter.  Since you can achieve that by wearing the Bose earbuds/headphones, that is the right approach to take.   

When I was really struggling, I found one restaurant with very high ceilings where I was comfortable.  It was tough going in many other settings.  The more I could get out in the world, the better.  I did my best to spend time in settings I could handle.  There was no way to avoid exposure to sounds that resulted in my feeling physical pain.  I opted to do my best in those settings, rather than isolate myself.  So, I went to work.  It wasn't easy, but I'm glad I did.  Psychologically, it was important for me to do so.

Adding the music protocol to your routine may help you improve your tolerance of sound, including road noise.  From what you have written, my sense is that you are describing hyperacusis.  I'm just suggesting your audiologist rule recruitment in or out.  

Rob


I agree with everything you are suggesting. I will give the music plan a try when I am back from travel in August and am back in my usual routine. 
If you are willing to share, what is your status with your hearing now? How many years have you been dealing with this? Are you a musician or sound engineer or something like that? 
Annie
0
Heatherbelle

Registered:
Posts: 8
Reply with quote  #21 
Anniekin, thanks for your reply.
My audiologist said basically the same thing about the volume of my sound generators....I need to be able to hear conversation and not have it impeded or the noise be distracting. For the most part it is fine, just every now and then I have to turn it down. I am able to turn up the volume myself and also have two settings - 'normal' and 'noise'. Then I also have two other settings of fractal chimes which drive me crazy and I can't use. Most people find them very relaxing, but they are chimes without melody or rhythm. No thanks! Workers Compensation paid for my noise generators so I don't know how much they cost, but they are very similar to both of my in laws' hearing aides so I'm sure they were top of the line.

I live just north of you in Surrey, BC Canada. I'm about a half hour from the border so I've been to Bellingham and Seattle many times. Never down further to Portland, though.

As far as dealing with the emotional stuff, my hubby has been on disability for over 20 years due to,a work related back injury and subsequent fibromyalgia. I spend a lot of time in our bedroom as I still have photophobia (light sensitivity) from my concussions, but having him around, and the fact he totally understands how I feel, has been very helpful. I miss my Zumba most. I found Zumba about a year before my first concussion and lost a bunch of weight, made a bunch of friends, and loved it! Now it's too loud and the exercise is hard. I went back a couple of times using earplugs after my first concussion in 2013 and it was too hard then so I can only imagine how uncomfortable it would be since my second concussion last year. I still have hope I'll be back. I've gained weight and am so out of shape now - I miss the fun! At least I have hope now! My audiologist is awesome and although my headaches have been worse since starting using the noise generators about 4 weeks ago, I know it will take time. I work at an elementary school and I never realized how noisy a classroom of kids could be until I went back after my first concussion. I never went back after my second, thank goodness!

Hope you have a wonderful July 4th weekend!


0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.



This message board is for informational purposes only. It is not intended to substitute for any medical advice. MANDATORY BOARD ETIQUETTE: 1. No personal attacks. 2. No profanity or use of inappropriate usernames. 3. No self solicitation of goods or services. 4 No discriminatory remarks based on race, gender, or religion. 5. Prohibitive postings include the following: discussing or suggesting the intent to end one's life, moderating or actions made by the moderators, and/or revealing personal information (full names, address, phone number). Rule infraction may result in either a warning or ban, depending on the severity. Kindness matters.