Hyperacusis — No Tinnitus — at Age 16 from Listening to Loud Music Through Earphones?

[Safari1999]

If you genuinely think you have hearing loss you should get an audiogram ASAP. It is not exactly reliable in terms of giving a clear picture of what's happening in your cochlea, but it will at least show if you have serious damage to your outer hair cells. If the audiogram doesn't show anything and you still feel like you can't hear well, then you may have synaptic loss, in which case you'll need a regenerative drug in the years coming.

By manage, I mean manage your acoustic shock and lifestyle so that your sensitivity to sound does not worsen any further - meaning avoid loud environments for the time being, headphone use, protect your ears when necessary etc. If your family's voices make you uncomfortable, you could try asking them to speak in a softer voice while they are around you in these initial stages of recovery. If they can't do it, wear ear plugs. If that still doesn't help, perhaps better to not be around them too much while you're recovering.

Ok, thanks.

 

[nogg]

How many hours each day are you wearing and listening to the sound generators? How loud do you generally have them set and are you listening to pink noise?

I use them from early in the morning until late at night, so typically 12 hours or more.

I keep the sound at a very low level. Initially I set it to be just barely perceptible. Now it is set to be just very slightly more. As time goes on I will experiment with louder settings perhaps for brief periods to see how that works, but I absolutely do not try to push my ears to higher sound levels. Under the initial guidance of a TRT audiologist, I did set them at higher levels and used them for only 10 to 15 minutes a day, but for me that ended up being an intolerable disaster, and the audiologist just didn't seem to comprehend the situation.

The audiologist sold me Amplisound Quell sound generators. I think it is only available through audiologists. The documentation says nothing about the type of sound, so I don't know if it is white, pink or some other flavor.

 

[nogg]

I'm confused about that last part, does 'manage' mean I can restore my hearing or will I not be able to do that?

Also, should I protect my ears from ALL sounds that make me uncomfortable? Even sounds like my family's voices?

Thanks for the advice BTW

I would be cautious about using earplugs too much. You certainly want to protect your ears from short-duration loud sounds or longer duration somewhat loud sounds (like traveling in a car), but for more normal situations like around home, earplug use should be minimal. If family members voices become too uncomfortable, you might just ask them politely to speak a little more softly. But if you would be using a kitchen appliance then using hearing protection might be a good idea. The idea of protecting your ears more aggressively for perhaps the first month or so is to give your body a chance to heal itself during the acute phase without incurring more damage from further intermittent insults, but it is not meant as a recommendation to isolate yourself from all sounds or for longer times.

But, using hearing protection in loud situations that you previously might not have bothered with is a practice that should continue. For instance, long before I had any problems, I would use earplugs when traveling in an old VW Bus I owned because it was just too loud from general road noise. Some cars are quiet, others are not, so judgement must be used, but a radio playing at a level that is comfortable when a car is at freeway speeds becomes clearly too loud after slowing down. That is an indication of how loud car travel can be. In any situations where the sound becomes elevated it is wise to use hearing protection. Failure to do so is why hearing loss is so prevalent among the elderly, or even middle aged. In other situations of short duration it is usually adequate to just use your fingers to plug your ears for protection. You should get comfortable with doing that. If I am walking down the street and pass someone who is using a leaf blower or a loud truck goes by, I just quickly plug my ears with my fingers, rather than use hearing protection all the time which would block out typical ambient sounds.

Much of this has to do with just how sensitive your ears are. Until recently, I would find myself using an earplug in my left ear (the worse one) through much of the day because otherwise my ear would feel continually irritated and sensitive. But that is currently no longer the case. Many people with hyperacusis and tinnitus can tolerate a certain amount of sound without worsening their condition of finding it uncomfortable.

 

[Safari1999]

I would be cautious about using earplugs too much. You certainly want to protect your ears from short-duration loud sounds or longer duration somewhat loud sounds (like traveling in a car), but for more normal situations like around home, earplug use should be minimal. If family members voices become too uncomfortable, you might just ask them politely to speak a little more softly. But if you would be using a kitchen appliance then using hearing protection might be a good idea. The idea of protecting your ears more aggressively for perhaps the first month or so is to give your body a chance to heal itself during the acute phase without incurring more damage from further intermittent insults, but it is not meant as a recommendation to isolate yourself from all sounds or for longer times.

But, using hearing protection in loud situations that you previously might not have bothered with is a practice that should continue. For instance, long before I had any problems, I would use earplugs when traveling in an old VW Bus I owned because it was just too loud from general road noise. Some cars are quiet, others are not, so judgement must be used, but a radio playing at a level that is comfortable when a car is at freeway speeds becomes clearly too loud after slowing down. That is an indication of how loud car travel can be. In any situations where the sound becomes elevated it is wise to use hearing protection. Failure to do so is why hearing loss is so prevalent among the elderly, or even middle aged. In other situations of short duration it is usually adequate to just use your fingers to plug your ears for protection. You should get comfortable with doing that. If I am walking down the street and pass someone who is using a leaf blower or a loud truck goes by, I just quickly plug my ears with my fingers, rather than use hearing protection all the time which would block out typical ambient sounds.

Much of this has to do with just how sensitive your ears are. Until recently, I would find myself using an earplug in my left ear (the worse one) through much of the day because otherwise my ear would feel continually irritated and sensitive. But that is currently no longer the case. Many people with hyperacusis and tinnitus can tolerate a certain amount of sound without worsening their condition of finding it uncomfortable.

Ok, thanks for the advice. If i

I would be cautious about using earplugs too much. You certainly want to protect your ears from short-duration loud sounds or longer duration somewhat loud sounds (like traveling in a car), but for more normal situations like around home, earplug use should be minimal. If family members voices become too uncomfortable, you might just ask them politely to speak a little more softly. But if you would be using a kitchen appliance then using hearing protection might be a good idea. The idea of protecting your ears more aggressively for perhaps the first month or so is to give your body a chance to heal itself during the acute phase without incurring more damage from further intermittent insults, but it is not meant as a recommendation to isolate yourself from all sounds or for longer times.

But, using hearing protection in loud situations that you previously might not have bothered with is a practice that should continue. For instance, long before I had any problems, I would use earplugs when traveling in an old VW Bus I owned because it was just too loud from general road noise. Some cars are quiet, others are not, so judgement must be used, but a radio playing at a level that is comfortable when a car is at freeway speeds becomes clearly too loud after slowing down. That is an indication of how loud car travel can be. In any situations where the sound becomes elevated it is wise to use hearing protection. Failure to do so is why hearing loss is so prevalent among the elderly, or even middle aged. In other situations of short duration it is usually adequate to just use your fingers to plug your ears for protection. You should get comfortable with doing that. If I am walking down the street and pass someone who is using a leaf blower or a loud truck goes by, I just quickly plug my ears with my fingers, rather than use hearing protection all the time which would block out typical ambient sounds.

Much of this has to do with just how sensitive your ears are. Until recently, I would find myself using an earplug in my left ear (the worse one) through much of the day because otherwise my ear would feel continually irritated and sensitive. But that is currently no longer the case. Many people with hyperacusis and tinnitus can tolerate a certain amount of sound without worsening their condition of finding it uncomfortable.

Ok, thanks. If I have already incurred more damage during the acute phase i.e. within the first week, is this reversible if I am very careful from now on?

 

[nogg]

Ok, thanks for the advice. If i

Ok, thanks. If I have already incurred more damage during the acute phase i.e. within the first week, is this reversible if I am very careful from now on?

Your body will heal as much as it can. A re-injury would usually mean a temporary setback as long as it wasn't too much. Exposure to normal sounds typically wouldn't cause permanent worsening. Loud or continuous impact sounds could certainly cause a permanent worsening. So for instance, don't ever use a hammer, ride in a subway or go around construction sites without really good hearing protection. Being in a room where a band is playing is very risky. Other things like getting a loud blast of sound through earbuds or headphones could certainly be damaging, as well as a series of loud or even not-so-loud impact sounds like what could be experienced in an MRI machine or with any test that involves putting a series of clicks through headphones. I mention those because they are tests that an ENT might want to do, but they are risky for anyone with hyperacusis, and ENTs seem to be oblivious to that. They would also deny that those could cause a problem. Those are tests that would be looking for tumors, but tumors are very rare, and those tests would only be appropriate for people who mysteriously developed hyperacusis with no identifiable cause.

Other sounds like the noise of a shower, a microwave or normal conversation might be uncomfortable but is unlikely to cause damage. However, if you were in a noisy environment like a full cafeteria or anywhere where people might want to shout into your ear to be heard, that could definitely be a problem and you should avoid that.

I saw this video yesterday, an account of someone's experience with hyperacusis. Everyone is different and many people fully recover, so don't take his final outcome (which was a definite improvement) as defining the trajectory that you will take. But I think it is interesting to view.

 

[Safari1999]

Your body will heal as much as it can. A re-injury would usually mean a temporary setback as long as it wasn't too much. Exposure to normal sounds typically wouldn't cause permanent worsening. Loud or continuous impact sounds could certainly cause a permanent worsening. So for instance, don't ever use a hammer, ride in a subway or go around construction sites without really good hearing protection. Being in a room where a band is playing is very risky. Other things like getting a loud blast of sound through earbuds or headphones could certainly be damaging, as well as a series of loud or even not-so-loud impact sounds like what could be experienced in an MRI machine or with any test that involves putting a series of clicks through headphones. I mention those because they are tests that an ENT might want to do, but they are risky for anyone with hyperacusis, and ENTs seem to be oblivious to that. They would also deny that those could cause a problem. Those are tests that would be looking for tumors, but tumors are very rare, and those tests would only be appropriate for people who mysteriously developed hyperacusis with no identifiable cause.

Other sounds like the noise of a shower, a microwave or normal conversation might be uncomfortable but is unlikely to cause damage. However, if you were in a noisy environment like a full cafeteria or anywhere where people might want to shout into your ear to be heard, that could definitely be a problem and you should avoid that.

I saw this video yesterday, an account of someone's experience with hyperacusis. Everyone is different and many people fully recover, so don't take his final outcome (which was a definite improvement) as defining the trajectory that you will take. ut I think it is interesting to view.

Ok, thanks. I exposed myself to a couple train rides after my onset, the first two or so without protection and the last couple with protection (which I'm afraid now wasnt adequate enough).

As I am quite young, and in the early acute stage. Will this worsening really be permenant? I know you cant really know the answer to that question but I cant even exist around my family because they speak too loud. I refuse to believe that I will spend my lifetime avoiding them/telling them to be quiter.

Also, what counts as adequate ear protection? Isnt thar relative to your sensitivity? I think that I am fine taking a train ride with wax earplugs (as long as I cover my ears when the doors shut).

Thank you so much for your wisdom, its been so helpful.

 

[StoneInFocus]

If I didn't have empathy, I would not still be returning to this forum to offer my time and advice (for whatever it is worth) to help others, or on other platforms for that matter. If I was not empathetic, I would not be donating to the running of this forum or hyperacusis research. If I was not empathetic, I would not be writing emails to researchers every other week about anecdotal data from the community.

Look, maybe I was a bit harsh here. I do not know you personally after all, so I am not the one to give you feedback on your character as a whole. I suppose we both want to best for anyone asking advice on here, but we just have differing opinions on what that constitutes. In my view, I was just giving my own honest opinion on things, and you started taking offense to that and being rude to me personally. If someone like Michael Leigh is in a thread about pain hyperacusis telling someone it is all in their head and to not use hearing protection, I will debunk that as well. Criticizing advice someone has given is not the same as gatekeeping. In fact you could have just ignored what I said or agreed to disagree, but you chose to respond to me. Correct me if I'm wrong but I believe I have been respectful to you throughout our conversation (bar my last post), but I feel you've only become angrier and angrier at me. Now I apologize if I have been rude to you in some sort of way, that wasn't my intention at all. But I do not apologize for cautioning against giving too pessimistic advice. Especially not when we are dealing with such a young person here.

 

[nogg]

Ok, thanks. I exposed myself to a couple train rides after my onset, the first two or so without protection and the last couple with protection (which I'm afraid now wasnt adequate enough).

As I am quite young, and in the early acute stage. Will this worsening really be permenant? I know you cant really know the answer to that question but I cant even exist around my family because they speak too loud. I refuse to believe that I will spend my lifetime avoiding them/telling them to be quiter.

Also, what counts as adequate ear protection? Isnt thar relative to your sensitivity? I think that I am fine taking a train ride with wax earplugs (as long as I cover my ears when the doors shut).

Thank you so much for your wisdom, its been so helpful.

Indeed, "adequate" protection will vary depending on the person and how sensitive one is. For short or medium-duration periods usually well-fitting foam earplugs should be fine. For longer-duration timeframes (perhaps an hour or more) you might consider another level of protection such as earmuffs along with the earplugs. But, in this first month it would be better to avoid those situations altogether if you can. I know that is not always possible, but at least try to limit the optional exposures.

The good news about hyperacusis is that treating it has a very high success rate. Being careful in the initial phase (about a month) will help your body heal without having to contend with further assaults which could inhibit that healing. But, it is not a long-term strategy.

Some people can largely recover within a month or two just by being careful. But many, perhaps most, will either take longer or will need an active approach. An active approach would be to use sounds to slowly desensitize your hearing by starting with very low levels of ambient sounds and slowly increasing the volume somewhat. In addition, you would start exposing yourself to some normal sounds that are not loud but that you might find uncomfortable. For example, some people with hyperacusis use earplugs while taking a shower. One step would be to do that without the earplugs. But always, avoid loud sounds or impact sounds; they are never your friend.

Often within 3 months people can be back to normal, though it can take as much as a couple of years in some cases. When the time comes, perhaps in a few weeks, you could start with either a sound machine or just listening to ambient sound YouTube videos through good speakers at low volume. I mention good speakers because in my experience small speakers produce a harsher sound which can be more difficult to tolerate. For some, this approach might be adequate. For others the use of wearable sound generators might well be needed. You would most likely need to work with an audiologist to get those, and they are not cheap, though if it is needed for a return to normal life then they are a bargain.

Handling hyperacusis in the early phase is typically mentally difficult and there is understandably much anxiety and fear about the future. It is important to remember that most people either greatly improve or fully recover, perhaps with just minor sensitivities. So please remember that. If you feel yourself becoming anxious, try some meditation. There are plenty of apps and YouTube videos to help guide you along if needed.

 

[Athens]

Indeed, "adequate" protection will vary depending on the person and how sensitive one is. For short or medium-duration periods usually well-fitting foam earplugs should be fine. For longer-duration timeframes (perhaps an hour or more) you might consider another level of protection such as earmuffs along with the earplugs. But, in this first month it would be better to avoid those situations altogether if you can. I know that is not always possible, but at least try to limit the optional exposures.

The good news about hyperacusis is that treating it has a very high success rate. Being careful in the initial phase (about a month) will help your body heal without having to contend with further assaults which could inhibit that healing. But, it is not a long-term strategy.

Some people can largely recover within a month or two just by being careful. But many, perhaps most, will either take longer or will need an active approach. An active approach would be to use sounds to slowly desensitize your hearing by starting with very low levels of ambient sounds and slowly increasing the volume somewhat. In addition, you would start exposing yourself to some normal sounds that are not loud but that you might find uncomfortable. For example, some people with hyperacusis use earplugs while taking a shower. One step would be to do that without the earplugs. But always, avoid loud sounds or impact sounds; they are never your friend.

Often within 3 months people can be back to normal, though it can take as much as a couple of years in some cases. When the time comes, perhaps in a few weeks, you could start with either a sound machine or just listening to ambient sound YouTube videos through good speakers at low volume. I mention good speakers because in my experience small speakers produce a harsher sound which can be more difficult to tolerate. For some, this approach might be adequate. For others the use of wearable sound generators might well be needed. You would most likely need to work with an audiologist to get those, and they are not cheap, though if it is needed for a return to normal life then they are a bargain.

Handling hyperacusis in the early phase is typically mentally difficult and there is understandably much anxiety and fear about the future. It is important to remember that most people either greatly improve or fully recover, perhaps with just minor sensitivities. So please remember that. If you feel yourself becoming anxious, try some meditation. There are plenty of apps and YouTube videos to help guide you along if needed.

I like the optimistic message regarding hyperacusis. I have had hyperacusis for eighteen months now and been treating it with TRT/sound therapy. I am 56 so maybe it will take me longer to see improvement, but it almost seems like it is worsening for me. I know that some people have experienced improvement two to four years after onset. I am grateful that I do not experience pain from it like some folks (I might have some minor pain and soreness but not the intense pain that people reference).

 

[nogg]

I like the optimistic message regarding hyperacusis. I have had hyperacusis for eighteen months now and been treating it with TRT/sound therapy. I am 56 so maybe it will take me longer to see improvement, but it almost seems like it is worsening for me. I know that some people have experienced improvement two to four years after onset. I am grateful that I do not experience pain from it like some folks (I might have some minor pain and soreness but not the intense pain that people reference).

I would think that within 18 months you would have at least some improvement.

I know how it has been for me and how many other people have reported, but certainly I can't know how it will be for everyone. Even though any particular condition might have a very high success rate, that does imply that there are some that still don't improve to the extent desired or maybe not at all. Unfortunately, that is life. I went untreated for decades, so I don't know if I will make a full recovery. But at this point, that is not my measure of success. I will celebrate any improvement that makes my life a little easier, and I feel that after about 7 weeks I do have that. I hope that it will continue to improve but I don't know.

Are you working with an audiologist with successful experience in treating people with hyperacusis? If so, what feedback are you getting? It also might be time to consider help from a different practitioner. Any practitioner you work with should be able to give some kind of roadmap about how the treatment is expected to progress and also have the experience to change approaches based on how people are progressing.

To get a sense of that, I think this video is informative:

 

[Athens]

I would think that within 18 months you would have at least some improvement.

I know how it has been for me and how many other people have reported, but certainly I can't know how it will be for everyone. Even though any particular condition might have a very high success rate, that does imply that there are some that still don't improve to the extent desired or maybe not at all. Unfortunately, that is life. I went untreated for decades, so I don't know if I will make a full recovery. But at this point, that is not my measure of success. I will celebrate any improvement that makes my life a little easier, and I feel that after about 7 weeks I do have that. I hope that it will continue to improve but I don't know.

Are you working with an audiologist with successful experience in treating people with hyperacusis? If so, what feedback are you getting? It also might be time to consider help from a different practitioner. Any practitioner you work with should be able to give some kind of roadmap about how the treatment is expected to progress and also have the experience to change approaches based on how people are progressing.

To get a sense of that, I think this video is informative:

Yes, I worked with an audiologist experienced in treating hyperacusis and tinnitus, but he is young. I am seeing an ENT soon. She has apparently helped some people with hyperacusis and tinnitus. I have already seen two ENTs, including a Neuro ENT who was on the board of the hyperacusis and tinnitus clinic. He told me to continue with the sound therapy. The American Tinnitus Association has/had a reference on their website that there is no treatment for hyperacusis.

The audiologists that I have worked with have been generally passive in their approach. The counseling has been a disappointment.

 

[nogg]

Yes, I worked with an audiologist experienced in treating hyperacusis and tinnitus, but he is young. I am seeing an ENT soon. She has apparently helped some people with hyperacusis and tinnitus. I have already seen two ENTs, including a Neuro ENT who was on the board of the hyperacusis and tinnitus clinic. He told me to continue with the sound therapy. The American Tinnitus Association has/had a reference on their website that there is no treatment for hyperacusis.

The audiologists that I have worked with have been generally passive in their approach. The counseling has been a disappointment.

I don't think counseling makes any sense in treating hyperacusis, other than to let you know what the treatment path will be. The treatment for hyperacusis is desensitization which doesn't require addressing any emotional or anxiety concerns for it to be successful as might be the case with treating tinnitus.

My experience with ENTs has been very poor, but that was decades ago so things might have changed. Certainly, sound therapy is likely the only possible path forward, so I understand the recommendation. I think anyone you work with should be able to give a sense of how things should progress and in what timeframe, as well as how treatment might change if no progress is seen. An inability to provide that information would be a concern for me and would likely make me think that they are just winging it and really don't know.

I think it is important for you to work with someone who has seen difficult patients and were still able to succeed. Those who don't have that experience might be practicing beyond their level of expertise.

At least you are being proactive about this. I would like to think that you will eventually be successful. You might start a thread to tell your story and keep the community up to date on what you are trying and how things go. I'm sure that many would find it useful and helpful.

 

[Safari1999]

Update:

Almost 2 weeeks on and I'm nowhere near improvement. In fact I've developed tinnitus and facial pain.

 

[Athens]

I don't think counseling makes any sense in treating hyperacusis, other than to let you know what the treatment path will be. The treatment for hyperacusis is desensitization which doesn't require addressing any emotional or anxiety concerns for it to be successful as might be the case with treating tinnitus.

My experience with ENTs has been very poor, but that was decades ago so things might have changed. Certainly, sound therapy is likely the only possible path forward, so I understand the recommendation. I think anyone you work with should be able to give a sense of how things should progress and in what timeframe, as well as how treatment might change if no progress is seen. An inability to provide that information would be a concern for me and would likely make me think that they are just winging it and really don't know.

I think it is important for you to work with someone who has seen difficult patients and were still able to succeed. Those who don't have that experience might be practicing beyond their level of expertise.

At least you are being proactive about this. I would like to think that you will eventually be successful. You might start a thread to tell your story and keep the community up to date on what you are trying and how things go. I'm sure that many would find it useful and helpful.

I have read more than one posting from various people who have improved two to four years after onset. Some of them did not have any treatment but apparently improved after the passage of time.

One positive aspect of my condition is that I do my have any pain (not of any significance). The most serious cases appear to involve pain hyperacusis/noxacusis.

 

[nogg]

Update:

Almost 2 weeeks on and I'm nowhere near improvement. In fact I've developed tinnitus and facial pain.

Have you been to an ENT yet? The facial pain could be related to a medical condition, but I have no experience with that. One thing an ENT can do is rule out any medical condition, and that is important. Hyperacusis is usually accompanied by tinnitus, unfortunately. Like hyperacusis, it can be caused by some medical conditions, but is often associated with noise trauma, either from a discrete event or longer-term exposure.

With tinnitus, it is important to separate the sound from the anxiety it often produces. Many people will adjust to that normally over time, and tinnitus will often diminish a lot.

This is a video of one person's story with tinnitus, which I though was very interesting:

 

[Athens]

I don't think counseling makes any sense in treating hyperacusis, other than to let you know what the treatment path will be. The treatment for hyperacusis is desensitization which doesn't require addressing any emotional or anxiety concerns for it to be successful as might be the case with treating tinnitus.

My experience with ENTs has been very poor, but that was decades ago so things might have changed. Certainly, sound therapy is likely the only possible path forward, so I understand the recommendation. I think anyone you work with should be able to give a sense of how things should progress and in what timeframe, as well as how treatment might change if no progress is seen. An inability to provide that information would be a concern for me and would likely make me think that they are just winging it and really don't know.

I think it is important for you to work with someone who has seen difficult patients and were still able to succeed. Those who don't have that experience might be practicing beyond their level of expertise.

At least you are being proactive about this. I would like to think that you will eventually be successful. You might start a thread to tell your story and keep the community up to date on what you are trying and how things go. I'm sure that many would find it useful and helpful.

I think that "winging it" is an appropriate description of treating hyperacusis. There has been very little research on it, and I don't think that the experts are very knowledgeable regarding causation and treatment. One other person has commented that using sound therapy and TRT for hyperacusis is just something that they "threw in there."

 

[nogg]

I think that "winging it" is an appropriate description of treating hyperacusis. There has been very little research on it, and I don't think that the experts are very knowledgeable regarding causation and treatment. One other person has commented that using sound therapy and TRT for hyperacusis is just something that they "threw in there."

There indeed has been some controversy about outcomes using sound therapy for tinnitus. In one paper I read, mentioned in another part of the forum, a double-blinded study of sound therapy for a year produced no better outcomes than without. But that is one study and any one study is not definitive. It does seem that many people have improved their hyperacusis with sound therapy (many does not mean all) and the idea of desensitizing the neural pathways does seem reasonable, though I am not aware of any controlled studies to prove that.

I can only tell how things have changed for me in the last 6 months. Six months ago both my tinnitus and hyperacusis were worse than it ever had been on a sustained basis. I was using an earplug in my left ears most of the time, and I would continually use earmuffs when working in the kitchen and much of the time outside, and I would frequently look forward to death as my only eventual relief (though I have NO interest in hurrying that along). Though my initial exposure to sound therapy didn't go well, when I restarted at a pace, things did change fairly quickly. Within a few weeks my sensitivity to sounds around the house was greatly reduced. I haven't been using an earplug in my left ear and will only use earmuffs for something that might involve sharp impact noises, and mostly as a precaution. I also go outside in the backyard without earmuffs and feel comfortable. My tinnitus had reached an annoying and abrasive level which would eventually drag me down. But even that has improved. It is still very audible but no longer has the abrasive quality to it. I no longer look forward to death as a release.

So, sound therapy has indeed reduced the intensity of my condition, and I have no reason to believe that doing nothing would have made anything better. Sadly, not everyone can say that.

 

[Athens]

There indeed has been some controversy about outcomes using sound therapy for tinnitus. In one paper I read, mentioned in another part of the forum, a double-blinded study of sound therapy for a year produced no better outcomes than without. But that is one study and any one study is not definitive. It does seem that many people have improved their hyperacusis with sound therapy (many does not mean all) and the idea of desensitizing the neural pathways does seem reasonable, though I am not aware of any controlled studies to prove that.

I can only tell how things have changed for me in the last 6 months. Six months ago both my tinnitus and hyperacusis were worse than it ever had been on a sustained basis. I was using an earplug in my left ears most of the time, and I would continually use earmuffs when working in the kitchen and much of the time outside, and I would frequently look forward to death as my only eventual relief (though I have NO interest in hurrying that along). Though my initial exposure to sound therapy didn't go well, when I restarted at a pace, things did change fairly quickly. Within a few weeks my sensitivity to sounds around the house was greatly reduced. I haven't been using an earplug in my left ear and will only use earmuffs for something that might involve sharp impact noises, and mostly as a precaution. I also go outside in the backyard without earmuffs and feel comfortable. My tinnitus had reached an annoying and abrasive level which would eventually drag me down. But even that has improved. It is still very audible but no longer has the abrasive quality to it. I no longer look forward to death as a release.

So, sound therapy has indeed reduced the intensity of my condition, and I have no reason to believe that doing nothing would have made anything better. Sadly, not everyone can say that.

Is/was your tinnitus reactive?

 

[nogg]

Is/was your tinnitus reactive?

I think so. When I turn on a water faucet, I notice my tinnitus instantly increases, though it returns to baseline fairly soon. If I go for a walk through areas with normal city sounds or drive at highway speeds for an hour or more, I find my tinnitus increases quiet a lot and typically remains elevated until the next day. If I am exposed to louder sounds or longer times, my tinnitus might take days to return to baseline, but I try to avoid that. I think it is improving some, but I'm not sure.

 

[Shizune]

Have you been to an ENT yet? The facial pain could be related to a medical condition, but I have no experience with that. One thing an ENT can do is rule out any medical condition, and that is important.

Facial pain is very common with pain hyperacusis. An ENT most likely won't be able to figure out if there's an underlying cause, because the pain is coming from the hyperacusis itself. It can also be caused from a pinched nerve but considering the noise trauma I highly doubt it.

@Safari1999, I'm really sorry you are going through this and I was in the same boat as you. New to hyperacusis, not sure what route to take, ENTs and audiologists giving crap advice, praying things get better, then tinnitus developing and the fear of what could be next. I would be very wary with the "rule out" approach that ENTs/most doctors seem to have. Especially if they want to go the fistula route and order an MRI (you more than likely don't, your cause is acoustic trauma, do not get an MRI). Hyperacusis and noise trauma bring on a host of symptoms, many of which ENTs can't really explain or have little to say regarding it. My case is a bit different from yours but I have tons of migraine-like symptoms, also common with hyperacusis, and I've been told I have anything from migraines to epilepsy, when I had no issues prior. Hyperacusis is one big umbrella that unfortunately causes a whole bunch of problems.

If you want my opinion it would be to protect your ears early on. And when I say protection I mean use actual protection like earmuffs and earplugs. I made the bad mistake of not using protection, because an audiologist insisted it would just make it worse. My idea of "protection" was noise cancelling ear buds, which just funneled more sound into my ears instead of actually protecting them from high dB noise. After a few days of going out and continuing life as is with regular noise exposure, boom. Immediately got worse.

If you want to use earplugs I'd suggest foam earplugs and make sure that they are properly fitted, you can use YouTube videos to help you. Another big mistake I made was getting custom earplugs that barely went into my ears. The occlusion from them gave me several setbacks in a row and I attribute my rapid decline and current severity to that.

You're very young and I assume your parents think that a doctor will solve this. The truth is there are no experts. Research is just beginning to gain speed, and doctors aren't always up to date with it. And there is a lot of medical dogma regarding it. I've visited top ENTs in the country and they still insist that hyperacusis is all anxiety and depression related. It's definitely brain related for some, but not all. Pain hyperacusis is a whole another can of worms.

It's probably going to be hard to convince your parents of this though, especially with a lot of pushback on "don't believe what you read online" especially nowadays. I would suggest going to hyperacusisresearch.org and printing out some of the literature there, actual backed science about current research. Trying to chase doctors I think will just make you worse in the long run. It sure has for me.

 

[Athens]

I would think that within 18 months you would have at least some improvement.

I know how it has been for me and how many other people have reported, but certainly I can't know how it will be for everyone. Even though any particular condition might have a very high success rate, that does imply that there are some that still don't improve to the extent desired or maybe not at all. Unfortunately, that is life. I went untreated for decades, so I don't know if I will make a full recovery. But at this point, that is not my measure of success. I will celebrate any improvement that makes my life a little easier, and I feel that after about 7 weeks I do have that. I hope that it will continue to improve but I don't know.

Are you working with an audiologist with successful experience in treating people with hyperacusis? If so, what feedback are you getting? It also might be time to consider help from a different practitioner. Any practitioner you work with should be able to give some kind of roadmap about how the treatment is expected to progress and also have the experience to change approaches based on how people are progressing.

To get a sense of that, I think this video is informative:

Also, I have experienced these conditions for eighteen (18) months but have only received treatment for approximately nine (9) months. I have not hit the one year date for treatment yet. I still don't understand how sound therapy could result in improvement if there has been significant physiological damage to the auditory system.

 

[nogg]

Also, I have experienced these conditions for eighteen (18) months but have only received treatment for approximately nine (9) months. I have not hit the one year date for treatment yet. I still don't understand how sound therapy could result in improvement if there has been significant physiological damage to the auditory system.

There is much that really isn't known about the hearing system. There are theories about how quieter sounds are amplified while louder sounds are not (usually), but I think it is generally thought that amplification occurs both within the OHCs/IHCs circuity and at higher levels in the brain. The idea, I believe, is that when OHCs are destroyed and that amplification circuitry goes awry, there is still the ability at higher levels that don't involve hair cell to adapt and restore normal amplification. That being because the brain is plastic and can be reprogrammed around dysfunctioning areas or adapt to dysfunctions occurring elsewhere, at least to a degree providing a continuous input of sound will reprogram the brain to consider that to be a normal level sound, somehow resulting in restoration of normal or more normal amplification.

That's a lot of fuzzy arm waving, I know. But it's the best I can do and likely not far off from what anyone else could say. Sound therapy isn't going to correct damaged or destroyed OHCs for sure, but it doesn't need to. In addition, what is actually important is that it has been shown to work for many people, regardless of the actual mechanism.

 

[Wrfortiscue]

Also, I have experienced these conditions for eighteen (18) months but have only received treatment for approximately nine (9) months. I have not hit the one year date for treatment yet. I still don't understand how sound therapy could result in improvement if there has been significant physiological damage to the auditory system.

I think it's supposed to desensitize hyperacusis. I truly believe we need a balance of protection and sound enrichment. How much of each is the biggest question.

 

[Athens]

There is much that really isn't known about the hearing system. There are theories about how quieter sounds are amplified while louder sounds are not (usually), but I think it is generally thought that amplification occurs both within the OHCs/IHCs circuity and at higher levels in the brain. The idea, I believe, is that when OHCs are destroyed and that amplification circuitry goes awry, there is still the ability at higher levels that don't involve hair cell to adapt and restore normal amplification. That being because the brain is plastic and can be reprogrammed around dysfunctioning areas or adapt to dysfunctions occurring elsewhere, at least to a degree providing a continuous input of sound will reprogram the brain to consider that to be a normal level sound, somehow resulting in restoration of normal or more normal amplification.

That's a lot of fuzzy arm waving, I know. But it's the best I can do and likely not far off from what anyone else could say. Sound therapy isn't going to correct damaged or destroyed OHCs for sure, but it doesn't need to. In addition, what is actually important is that it has been shown to work for many people, regardless of the actual mechanism.

When you started back with your most recent round of sound therapy, did you set the volume of your sound generators to barely audible in a quiet room or did you set it just below the sound of your tinnitus? Also, did you go into a very quiet place like the inside of a closet to set them or did you set them in a room with a normal level of sound?

I struggle with the issue of whether I should set the volume higher on the sound generators. One day a few months ago, I set them at a much higher level of volume and my tinnitus actually seemed much lower that night. I worry about aggravating my tinnitus and hyperacusis, but I have heard that setting the volume too low can also result in a worsening of the symptoms.

Yes, I have read that the sound therapy can coax the brain to turn the volume button down. I think that you explained it pretty well, and it gives me some hope for some improvement in the future. It is interesting that some people improve after two to four years without receiving any treatment at all.

 

[Athens]

I think it's supposed to desensitize hyperacusis. I truly believe we need a balance of protection and sound enrichment. How much of each is the biggest question.

Yes, and I struggle with how to set the sound generators. Setting them too high or too low can apparently aggravate the symptoms. I once set them much higher one day, and my tinnitus seemed much lower that same night. It may have just been a fluke, but I have been too "chicken" to try it again.

 

[Safari1999]

Facial pain is very common with pain hyperacusis. An ENT most likely won't be able to figure out if there's an underlying cause, because the pain is coming from the hyperacusis itself. It can also be caused from a pinched nerve but considering the noise trauma I highly doubt it.

@Safari1999, I'm really sorry you are going through this and I was in the same boat as you. New to hyperacusis, not sure what route to take, ENTs and audiologists giving crap advice, praying things get better, then tinnitus developing and the fear of what could be next. I would be very wary with the "rule out" approach that ENTs/most doctors seem to have. Especially if they want to go the fistula route and order an MRI (you more than likely don't, your cause is acoustic trauma, do not get an MRI). Hyperacusis and noise trauma bring on a host of symptoms, many of which ENTs can't really explain or have little to say regarding it. My case is a bit different from yours but I have tons of migraine-like symptoms, also common with hyperacusis, and I've been told I have anything from migraines to epilepsy, when I had no issues prior. Hyperacusis is one big umbrella that unfortunately causes a whole bunch of problems.

If you want my opinion it would be to protect your ears early on. And when I say protection I mean use actual protection like earmuffs and earplugs. I made the bad mistake of not using protection, because an audiologist insisted it would just make it worse. My idea of "protection" was noise cancelling ear buds, which just funneled more sound into my ears instead of actually protecting them from high dB noise. After a few days of going out and continuing life as is with regular noise exposure, boom. Immediately got worse.

If you want to use earplugs I'd suggest foam earplugs and make sure that they are properly fitted, you can use YouTube videos to help you. Another big mistake I made was getting custom earplugs that barely went into my ears. The occlusion from them gave me several setbacks in a row and I attribute my rapid decline and current severity to that.

You're very young and I assume your parents think that a doctor will solve this. The truth is there are no experts. Research is just beginning to gain speed, and doctors aren't always up to date with it. And there is a lot of medical dogma regarding it. I've visited top ENTs in the country and they still insist that hyperacusis is all anxiety and depression related. It's definitely brain related for some, but not all. Pain hyperacusis is a whole another can of worms.

It's probably going to be hard to convince your parents of this though, especially with a lot of pushback on "don't believe what you read online" especially nowadays. I would suggest going to hyperacusisresearch.org and printing out some of the literature there, actual backed science about current research. Trying to chase doctors I think will just make you worse in the long run. It sure has for me.

What do you mean by occlusion? Is this when things like eating food sound louder when covering your ears? And is this harmful?

I don't experience pain when hearing sounds but perhaps my facial pain is a form of delayed pain? Anyways, I haven't experienced much of that for the past 2 days which I hope is a good sign.

I also developed tinnitus recently, guess I spoke too soon :/

 

[nogg]

When you started back with your most recent round of sound therapy, did you set the volume of your sound generators to barely audible in a quiet room or did you set it just below the sound of your tinnitus? Also, did you go into a very quiet place like the inside of a closet to set them or did you set them in a room with a normal level of sound?

My office study where I spent quite a bit of time is fairly quiet, about 35 dBA, so I don't feel the need to find a quieter space to adjust the setting, though I would if needed.

My first attempts at using the sound generators 4 months ago was to set them at a level that I could tolerate, per instruction from the audiologist, and to use them for 10 to 15 minutes a day. Well, I can tolerate quite a bit in the moment, whether sound or pain or any other discomfort. I didn't set it loud, but it was at a level where it was very audible, which didn't bother me for the few minutes I was using them. But, after four days my tinnitus had increased to an intolerable level, which was very concerning and prompted me to stop for 3 or 4 days while I returned to baseline. That happened 4 different times in succession and then I abandoned their use altogether, for 3 months.

Given that background, when I decided to restart I ignored what the audiologist had said and set it to a level that was barely audible, using them all day long, and that worked without problems. More encouraging was that within about 2 weeks I felt that things really had improved a bit. So that initial bad experience influenced what I felt was an appropriate level for me, at least initially. I do plan on increasing the volume, but I am going slow and being careful. I haven't noticed an increase in the tinnitus. Setting the volume at a level just below the sound of the tinnitus is standard treatment for tinnitus, but not for hyperacusis. The appropriate level for hyperacusis is the volume that is comfortable for long periods without any exacerbation. That level depends on the person and can change as therapy progresses.

I struggle with the issue of whether I should set the volume higher on the sound generators. One day a few months ago, I set them at a much higher level of volume and my tinnitus actually seemed much lower that night. I worry about aggravating my tinnitus and hyperacusis, but I have heard that setting the volume too low can also result in a worsening of the symptoms.

What seems appropriate to me is to increase the volume in steps. Give yourself a few weeks at one level. If that goes okay then increase the volume a bit, trending ever higher as long as it does not aggravate either the hyperacusis or your tinnitus. That is also what Dr. Jastreboff seems to recommend, and that is also the path I plan to slowly follow. But I will never try to "push through" to a higher level if I experience an exacerbation, rather I would retreat to a lower volume, one that would allow me to use the generators for most of the day.

Yes, I have read that the sound therapy can coax the brain to turn the volume button down. I think that you explained it pretty well, and it gives me some hope for some improvement in the future. It is interesting that some people improve after two to four years without receiving any treatment at all.

It's great that some can recover with no therapy. But after many years, that has never worked for me.

 

[Shizune]

What do you mean by occlusion? Is this when things like eating food sound louder when covering your ears? And is this harmful?

I don't experience pain when hearing sounds but perhaps my facial pain is a form of delayed pain? Anyways, I haven't experienced much of that for the past 2 days which I hope is a good sign.

I also developed tinnitus recently, guess I spoke too soon :/

Pretty much. It's when sound is amplified inside your head. The deeper the earplugs go into your ear, the less occlusion. Shallower = more occlusion. For my instance they reached maybe 1/4 of the way into my canal and I'd wake up with fullness and more sensitivity. But I was an idiot and kept using them cuz they were more comfortable to sleep in than foam earplugs.

There isn't any research but I wouldn't doubt this so-called "over-protection" advice has to do with the occlusion effect. So with that I think that's why it's important to ease up on protection in some instances but otherwise protect against harmful loud noise. It's about finding a balance. I wish I could offer advice on that but, I haven't found it either.

Also yes, delayed pain is very very common with noxacusis (pain hyperacusis). It can be ear pain, jaw pain, facial pain or numbness. And it doesn't have to be in the moment, it can be hours or even days after the event. Others get a combo of immediate pain and residual pain even in silence. Sometimes it's not consistent.

 

[Safari1999]

Pretty much. It's when sound is amplified inside your head. The deeper the earplugs go into your ear, the less occlusion. Shallower = more occlusion. For my instance they reached maybe 1/4 of the way into my canal and I'd wake up with fullness and more sensitivity. But I was an idiot and kept using them cuz they were more comfortable to sleep in than foam earplugs.

There isn't any research but I wouldn't doubt this so-called "over-protection" advice has to do with the occlusion effect. So with that I think that's why it's important to ease up on protection in some instances but otherwise protect against harmful loud noise. It's about finding a balance. I wish I could offer advice on that but, I haven't found it either.

Also yes, delayed pain is very very common with noxacusis (pain hyperacusis). It can be ear pain, jaw pain, facial pain or numbness. And it doesn't have to be in the moment, it can be hours or even days after the event. Others get a combo of immediate pain and residual pain even in silence. Sometimes it's not consistent.

In that case, I think I get a lot of occlusion from foam ear plugs... Maybe I'm not inserting them properly.

Also, I have constant ear fullness, I thought that was the case with all of us. Guess not.

 

[nogg]

Pretty much. It's when sound is amplified inside your head. The deeper the earplugs go into your ear, the less occlusion. Shallower = more occlusion. For my instance they reached maybe 1/4 of the way into my canal and I'd wake up with fullness and more sensitivity. But I was an idiot and kept using them cuz they were more comfortable to sleep in than foam earplugs.

There isn't any research but I wouldn't doubt this so-called "over-protection" advice has to do with the occlusion effect. So with that I think that's why it's important to ease up on protection in some instances but otherwise protect against harmful loud noise. It's about finding a balance. I wish I could offer advice on that but, I haven't found it either.

Also yes, delayed pain is very very common with noxacusis (pain hyperacusis). It can be ear pain, jaw pain, facial pain or numbness. And it doesn't have to be in the moment, it can be hours or even days after the event. Others get a combo of immediate pain and residual pain even in silence. Sometimes it's not consistent.

I've been thinking about the whole issue of "overprotection", and I'm just not convinced. I think that idea comes from the tinnitus theory that the brain is trying to fill in sounds that it is not receiving from destroyed hair cells. Then they just run with that and claim that any overall reduction in sound is somehow bad or leads to more tinnitus and hyperacusis. I would like to see some proof of that from studies that consistently show that effect. But, I am aware of none and I also don't hear of any personal experiences where people have claimed that to have occurred. I suspect that it is one of the many medical myths that have evolved over time. Someone has a theory and they speculate about what could occur based on their theory. They write a paper or a book where they talk about it. Other medical people pick that up and start repeating it as if it is a known medical fact, and the myth is born. This has happened in many different areas of medicine, and those myths can persist for many decades.

I have never noticed any such over-protection effect. I for years worked a night shift and would sleep during the day, requiring my to use earplugs all night to block out daytime noises. Never had any adverse effect. I used to work in an office with a too-noisey ventilation system, requiring me to use earplugs all day long every day. Never had an adverse effect.

So, either show me the proof, find a few people who have actually experienced this, or I am just not convinced.