Those with Hyperacusis and Tinnitus, Please I Need Insight

[Street Spirit]

In terms of amitrip, I was prescribed that for my TMJD and because I feel my H & TTS are directly caused by that, I thought it might be valuable for me to try, as it's supposed to stop night time clenching, which is a massive problem for me. It's temp until I can see the TMJD doc...However, like you, with T, it's a little hard starting meds like this..we certainly don't want to add fuel to the fire.

 

[demi]

Those who have hyperacusis and got better, were any of yours noise-induced? I was told today by someone else who has noise-induced H for many years now that it never gets better. That because it was induced by noise I will always be at risk. Even when my LDLs rise, they can collapse again with one sound.

I'm feeling more helpless than ever before after that news.

 

[Street Spirit]

I was told today by someone else who has noise-induced H for many years now that it never gets better.

Has this person gone to any lengths to get better? What evidence do they have to support this theory, other than their own experience?

From ALL the people I have come across, MOST get better if not drastically improve. I only know of a handful who have not, and I can't say for certain why, except in one case they did not even try to improve....

Don't feel helpless, focus on healing.

 

[dan]

Those who have hyperacusis and got better, were any of yours noise-induced? I was told today by someone else who has noise-induced H for many years now that it never gets better. That because it was induced by noise I will always be at risk. Even when my LDLs rise, they can collapse again with one sound.

I'm feeling more helpless than ever before after that news.

@demi , just to point out a small but significant contradictory statement in your quote - if LDL's rise, that is indicative of improvement so it does get better. However, unfortunately, it is true in some cases, that one sound that was too loud and it can collapse again. That's the insidious thing with H and T, is that one never knows...............until it happens.
I think you would not disagree with this claim?

On a happier note, you should not feel helpless. You had improvement and there is all the reason to expect more improvement.

 

[mmacabre]

Even noise-induced H can be improved with sound therapy

 

[dan]

good point @mmacabre

 

[demi]

Has this person gone to any lengths to get better? What evidence do they have to support this theory, other than their own experience?

From ALL the people I have come across, MOST get better if not drastically improve. I only know of a handful who have not, and I can't say for certain why, except in one case they did not even try to improve....

Don't feel helpless, focus on healing.

She just seems very negative, and I have decided to try my hardest not to fall into believing what she and others who always whole-heartedly agree with her say.

<3 I had a good cry and some prayer this morning, and I will continue to keep on doing what I can to get back to a happy life.

 

[peter1974]

Stop thinking about it. Spending hours on forums and live your life. Don't over protect your ears and take melatonin every night. 3mgs...that's what's helped me. I come to check the forums once a week no more. If you spend your time on forums and thinking about your condition all the time. Your brain will never tune it out.

 

[Street Spirit]

@demi

The way I see it you (and I) only have two choices. Follow the advice of people who live in a padded window apartments. Or follow the advice of your audiologist who has treated people successfully with h and t.

I know how tough it is. I live it daily. But I choose to look at the large percentage of those who have gone on to heal and they weren't hiding in their homes or wearing protection 24/7. Protect yourself from loud noises-yes. Protect yourself from life-no.

I will keep trying with you. We will get there.

hope you feel a little better today.

 

[dan]

Actually following the advice of people who live in padded window apartments might not be a bad ideal, if one, lives behind a hardware store and beside a sometimes noisy neighbor and also lives off a very busy highway with loud trucks and motorbikes.

 

[demi]

@demi

The way I see it you (and I) only have two choices. Follow the advice of people who live in a padded window apartments. Or follow the advice of your audiologist who has treated people successfully with h and t.

I know how tough it is. I live it daily. But I choose to look at the large percentage of those who have gone on to heal and they weren't hiding in their homes or wearing protection 24/7. Protect yourself from loud noises-yes. Protect yourself from life-no.

I will keep trying with you. We will get there.

hope you feel a little better today.

I believe you are right, we will battle through this. Hope you are feeling better too.

 

[here2help]

@demi, hyperacusis caused by exposure to loud sound gets much better in most cases provided we treat the condition and stick with it. This can be a complex undertaking because decreased sound tolerance rarely exists as hyperacusis alone. Many people with hyperacusis develop a fear of sound or other strong beliefs and feelings about sound, and some also develop long term pain when exposed to sound. It is important for a doctor to diagnose and treat these things too.

Few things are as personal to us as our own hearing. Because decreased sound tolerance can be such a frustrating and frightening condition, and challenging to diagnose and to treat, some people choose to not get into treatment. People who choose to not get into therapy, or do not stick with it, maintain tightly held beliefs about lifelong risk, reliance on hearing protection, permanently weakened ears, and what they regard as the illusion of true recovery. Their beliefs reflect what they may see as their new normal, and they hold onto them tightly because they also believe life as they once lived it is over.

As @Street Spirit said, these beliefs are based on their own experience, no one else's. I wouldn't spend a minute wondering if these beliefs apply to you. They don't. Decreased sound tolerance does get better, for real.

here2help

 

[dan]

@here2help, you seem extremely knowledgeable about hyperacusis treatment.
May I ask you then, how long does it take (on average) to recover from hyperacusis while under care of a professional experienced with dealing with hyperacusis ?
Lets assume a best case and worst case scenario.

 

[here2help]

@dan, it varies from person to person how long it takes to reestablish sound tolerance. Some people with minor or somewhat moderate hyperacusis that develops in conjunction with tinnitus are often able to do so over time by themselves. Others need some help with it, particularly those for whom hyperacusis is the main issue.

I don't know of a way to accurately predict how long it will take for one person to recover versus someone else, and here's why. There are a number of variables involved in recovery including a person's specific loudness discomfort levels; the presence and extent of fear of sound or other strong feelings and beliefs about sound; whether the person experiences immediate pain when exposed to some sound; whether the person experiences pain long after being exposed to sound; the characteristics of a person's setbacks, including how long the setbacks last; the person's commitment to get into therapy and stick with it no matter how challenging and frustrating it can sometimes be; the person's openness to identifying and challenging beliefs about sound that may be roadblocks to improvement; and the doctor's experience and creativity in treating and interacting with patients who have been diagnosed with hyperacusis and other forms of decreased sound tolerance.

A few thoughts added to respond to @Sen's post, just below this one.

In a paper on decreased sound tolerance (DST) just published by Dr. Pawel Jastreboff and Dr. Margaret Jastreboff in Seminars In Hearing, of 201 patients with DST who were treated with Tinnitus Retraining Therapy at Emory Tinnitus and Hyperacusis Center, 82% significantly improved. For hyperacusis, improvement was judged on the basis of changes in loudness discomfort levels and the patient's responses during structured interviews. For misophonia, improvement was judged on the basis of the patient's responses during the interviews. This does not mean one in five people do not improve, matt; it means slightly less than one in five did not improve when treated with TRT.

By "much" better in most cases, I meant there is a considerable improvement in sound tolerance in most cases which results in a person living normally and fully. In some cases, patients can cure hyperacusis and misophonia. In some cases, treatment doesn't result in much, or any, improvement. Just as there are a number of variables involved in recovery, a number of variables are involved in not recovering, including some variables I mentioned above, as well as a need to improve the diagnosis and treatment of DST.

here2help

 

[Sen]

Clinicians tend to cite a success rate of 80% give or take. Does this mean that one in five people do not improve? When clinicians talk about their success rate, how is "success" defined?

You say "hyperacusis caused by exposure to loud sound gets much better in most cases provided we treat the condition and stick with it." When you say "much" better, do you mean that even among the "most" who improve, some do not improve completely? What happens to the people who are not included in the "most" category?

I also left a very lengthy response to your thread about overuse of hearing protection. I hope that you can acknowledge and respond to my questions in both this thread and that one.

 

[dan]

@here2help, ok I understand you cannot answer how long a particular case of hyperacusis can resolve.
But am I correct to assume that TRT for hyperacusis takes the same amount of time of 6-24 months to complete ? and if the patient hasn't gotten better in that time, then the treatment is deemed unsuccessful ?
In other words, at what point is TRT deemed and unsuccessful strategy for that person ?

 

[SueR]

a slightly different pondering - I wonder if the amount of time spent before getting treatment factors into the success rate.

I don't know. I can say for myself, I was going down the wrong path for myself, in the early stages. The new [quiet] furnace in my basement was too loud for me, so I started wearing ear muffs. Then I learned early on that it's not good to do (I know there is differing view on that), so I stopped doing that. I returned back to quiet conversations were difficult to handle, but the furnace was fine.

after only a month with H, I started my therapy with sound generators and just took off with them. I had difficulty with dishes for a few months, and still have trouble with people talking in my ear if we are giving hugs, but otherwise, I am in a normal environment and rarely think about my H. Went to a restaurant on Friday night, did fine. I did plug my ears at my son's graduation because I knew there would be hootin' and hollerin'... including my own! 200 students, and probably about 1000 more people. (my one student had 8 people in the audience)

Is my success attributed, in large part, to the fact my brain wasn't mis-wired for a long period of time, so it had memory of what it was supposed to do?

I don't even know if it's a brain mis-wire or physical damage. Having a dx of Meniere's, I wonder if it is damage from MD. Still have questions.

 

[Grace]

I dont currently have it, but did experience it the first day i got T but it went away after a few hours. I didnt know what it was at the time, but i remember after my noise exposure my ears were ringing ofcorse and i was driving home and the radio sounded distorted and hurt
My ears so what did i do? I turned up the radio cause i couldnt hear it cause i was still deaf from the exposure lol but had no idea at the time that i shouldnt have done that. But i was kinda pissed that the radio sounded that way and my ears were hurting but if you have hypercausis and go around 90 db music i know it will hurt but since the H doesnt effect T then in reality you will be fine right? Or no? Maybe its a stupid question but curious. Like H hurts bad cause ears are sensitive to noise but say someone says fuck it and just goes around normal noise like someone with just T.. Will that make T worse or maybe help the H cause
Your getting use to normal sounds again?

 

[Sen]

This does not mean one in five people do not improve, matt; it means slightly less than one in five did not improve when treated with TRT.

Does this mean there are options outside of TRT in treating hyperacusis? What treatments are these, and what are their success rates when compared to TRT? Why would a different treatment work if TRT did not?

By "much" better in most cases, I meant there is a considerable improvement in sound tolerance in most cases which results in a person living normally and fully. In some cases, patients can cure hyperacusis and misophonia.

Are you saying that in most cases there is not a "cure" or total improvement, and that most people will have to live with some degree of decreased sound tolerance for the rest of their lives? That only some people will experience a full recovery?

In some cases, treatment doesn't result in much, or any, improvement. Just as there are a number of variables involved in recovery, a number of variables are involved in not recovering, including some variables I mentioned above, as well as a need to improve the diagnosis and treatment of DST.

For the sake of discussion, I am assuming a full completion of the best treatment by the most "knowledgeable" DST clinicians with a patients' absolute cooperation. What kind of variables would we see in such a case? Are there people who might not be capable of any improvement no matter how thorough the treatment may be?

 

[Sen]

For hyperacusis, improvement was judged on the basis of changes in loudness discomfort levels and the patient's responses during structured interviews. For misophonia, improvement was judged on the basis of the patient's responses during the interviews.

Another thought:

Sometimes individuals who have previously claimed success in TRT experience relapse years down the road. Right now two people on the hyperacusis network are writing about their big setbacks, from church and from bagpipes, car horns, etc. Does the criteria for TRT success include any long term follow up? If no, why not? When you consider that relapses are possible, and they certainly are, you would think that this would be an important factor to consider in whether or not treatment was successful in the first place.

 

[SueR]

IMO, success is when you can be engaged with society and not suffer. Just like healing a broken leg, a hyperacusis setback, I'd get back on the horse and do therapy again until I can engage with society and not suffer.

Last Friday, I went out to a restaurant and I did not suffer. (and it was a loud environment.) My H didn't bother me one bit. I call that success. I measure it in things I can do again.

 

[demi]

Congrats @SueR, that is definitely success! You are very inspiring.

 

[Street Spirit]

Does having a relapse years down the road mean treatment wasn't successful? I've also seen people who relapse,use trt again and get better again.

Sure, h is odd and it sucks to high hell. So does t. But trt is the best thing we have right now. Matt, why not ask these questions to your qualified clinician?

 

[Sen]

Matt, why not ask these questions to your qualified clinician?

There is no such thing as a "qualified" TRT clinician due to the lack of any standard qualification required to practice it. To call yourself a TRT clinician, all you need to do is be an audiologist and attend a very short course (3 days, I believe, but I could be wrong) taught by P. Jastreboff. When I say "attend" I literally mean that they don't have to do anything other than show up and sit through it. There are no qualifying tests at the end, and there is no way to know whether or not those in attendance were even listening.

I have been asking many questions to many people, including my clinicians, for well over a year now; Most of which have never been answered to any real satisfaction, or, much like in this thread, haven't been acknowledged at all.

 

[Street Spirit]

@Sen

did you ever try TRT? I understand what you are saying but I do think there are actual legitimate or "qualified" docs out there to treat h and t...though I know they are hard to come by, and it seems more complicated when pain is involved.

...Jastreboff still practices, perhaps you could see him?

I know your situation is complicated. I hope you find better treatment soon.

 

[Sen]

did you ever try TRT?

Yes, in addition to misophonia protocols.

 

[Street Spirit]

@Sen I've seen you mention that you saw the "top" neurotologist in the country. Would you mind sharing who that was?

 

[Gio Makyo]

Hi Demi,

I'm in a similar place right now. Had T ages ago and largely kicked it, but got hit with a new much louder spike with new tones which led quickly to Hyperacusis as well. Same story, being given ADs, refused TRT for now, which I am less than eager to try but feeling desperate.

The H is so bad I am at the point where just going outside is challenging. Had been following the advice not to use earplugs too much, was only using them in esp. noisy situations, but just walking around my neighbourhood one metal on metal clang right near me set off the H to all new levels. Not sure what I am supposed to do -- use ear protection and I risk over-sensitisation, making things worse, don't use it and any random sort of loud sound can have devastating effect. Any sort of high-trebly sound is piercing.

T, I've been through. Teach your brain to ignore it and it will, gradually improving with time. H I have no clue how to handle. Anyone?

P.S. -- I'm also trying acupuncture and some chinese herbal medicine; many musicians I now swear by acupuncture for T but hasn't helped yet.

 

[beemovie]

@demi, hyperacusis caused by exposure to loud sound gets much better in most cases provided we treat the condition and stick with it. This can be a complex undertaking because decreased sound tolerance rarely exists as hyperacusis alone. Many people with hyperacusis develop a fear of sound or other strong beliefs and feelings about sound, and some also develop long term pain when exposed to sound. It is important for a doctor to diagnose and treat these things too.

Few things are as personal to us as our own hearing. Because decreased sound tolerance can be such a frustrating and frightening condition, and challenging to diagnose and to treat, some people choose to not get into treatment. People who choose to not get into therapy, or do not stick with it, maintain tightly held beliefs about lifelong risk, reliance on hearing protection, permanently weakened ears, and what they regard as the illusion of true recovery. Their beliefs reflect what they may see as their new normal, and they hold onto them tightly because they also believe life as they once lived it is over.

As @Street Spirit said, these beliefs are based on their own experience, no one else's. I wouldn't spend a minute wondering if these beliefs apply to you. They don't. Decreased sound tolerance does get better, for real.

here2help

I have hyperacusis. I dont agree with your theory of someone having a fear of sound per se. The reason I will avoid some sounds is because they sound much louder then they should. Yes, I should not have to worry about the sound of holding a plastic water bottle but I do because every click of the bottle sounds like an explosion to me. I should not have worry about playing with a wooden puzzle with my daughter, but when the wood pieces hit each other it sounds terrible to me. This in turn makes me depressed because this is not normal. If I had some pain in say my arm that prevented me from holding the water bottle or playing with a puzzle I would not be depressed because pain at least makes sense.

 

[SueR]

I think there is truth to what @demi says. I would be anxious when I see the door about to close shut at the office, or similar things you are discribing with the water bottle. I started off slowly, with soft sounds, but I trained myself not to negatively react to sounds. Because i started off with quiet and consistent sounds, I would meditate about it, telling myself that these sounds won't hurt me, just let them enter the ear, telling myself I will be okay. a mind/body thing. It was something I learned about in yoga years ago. and my H was bad. Hearing the heater go on in my house was bothersome to me. I spent a month isolated in my bedroom and couldn't bear to even eat dinner with my family or have a conversation that wasn't a whisper. Today, the door slams at the office, dropped keys, bells going off... no problem. I still hear it louder than I should, but I stopped negatively reacting to them.