So... What's the Prognosis for Hyperacusis? — I'm 6 Months Into Severe Hyperacusis

[Johan_L]

I have had mild hyperacusis for a couple of years, but now I'm 6 months into severe hyperacusis. I just celebrated 3 months since my last setback. While the tinnitus decreased during the first month, extreme hyperacusis is still there.

What is the prognosis? I read that a lot of people get better with hyperacusis, but is that generally within the first X months?

Getting desperate and I am considering trying TRT or Pink Noise.

 

[GregCA]

I have had mild hyperacusis for a couple of years, but now I'm 6 months into severe hyperacusis. I just celebrated 3 months since my last setback. While the tinnitus decreased during the first month, extreme hyperacusis is still there.

Any particular event triggered this change?

What is the prognosis? I read that a lot of people get better with hyperacusis, but is that generally within the first X months?

They generally do indeed, but like anything, you could be in an unlucky minority.

 

[Rojo]

I can only say I'm interested too, as someone with such severe crippling hyperacusis I want to literally die, and I'm five months in when it started mild. My literal only hope is that my Ativan/benzo usage has made it worse and getting off will make it better, but then that brings in getting through withdrawal...

 

[Johan_L]

Any particular event triggered this change?

Always sound. When it became severe in August I was taking Aleve, so pretty sure that was part of it. I started improving after six weeks that time (to moderate hyperacusis). But then I went to a restaurant and have been in hell since.

 

[EDogg]

@Johan_L

The majority of people with hyperacusis get better with time. Try not to put a time table on it. Recovery can be fast for some and slow for others. No way to tell. If your recovery is slow it does not mean you won't recover! Try to find some helpful strategies to improve your sound tolerance. For some TRT or other methods of sound desensitization work. If you haven't already, probably a good idea to get evaluated by an audiologist or neuro-otologist knowledgeable in this condition.

Best,
EDogg

 

[Contrast]

@Johan_L

The majority of people with hyperacusis get better with time. Try not to put a time table on it. Recovery can be fast for some and slow for others. No way to tell. If your recovery is slow it does not mean you won't recover! Try to find some helpful strategies to improve your sound tolerance. For some TRT or other methods of sound desensitization work. If you haven't already, probably a good idea to get evaluated by an audiologist or neuro-otologist knowledgeable in this condition.

Best,
EDogg

no one is really knowledgeable on noise induced pain outside of researchers that aren't there yet.

 

[Contrast]

We don't even have different types of hyperacusis classified yet.


Most likely there are atleast two separate conditions both labelled hyperacusis, and until the medical community finally recognizes the different types of hyperacusis we won't get anywhere. All patients are being thrown in the same boat because things are classified superficial, not based on their pathology. Someone who has hyperacusis caused by autism via loudness amplification is not experiencing the same thing as someone who reports burning ear pain.We can go even futher and say damage to mylein around the AN is separate subtype from damage to OHC's activating the cochlea's noiceptors. But once again we are just hypothesizing because noise induced pain is not fully understood.

We can even argue there should be a peripheral and central version of hyperacusis, but we don't know!
Pain in the trigeminal nerve may not be the same type of hyperacusis caused by the noiceptors connected to outer hair cells, we still don't know?

The average hyperacusis sufferer is an NPC riding the TRT/CBT carousel completely unaware that there voice could make a difference.

If my pain hyperacusis ever comes back I will not hesitate to kill myself.

 

[Rojo]

We don't even have different types of hyperacusis classified yet.


Most likely there are atleast two separate conditions both labelled hyperacusis, and until the medical community finally recognizes the different types of hyperacusis we won't get anywhere. All patients are being thrown in the same boat because things are classified superficial, not based on their pathology. Someone who has hyperacusis caused by autism via loudness amplification is not experiencing the same thing as someone who reports burning ear pain.We can go even futher and say damage to mylein around the AN is separate subtype from damage to OHC's activating the cochlea's noiceptors. But once again we are just hypothesizing because noise induced pain is not fully understood.

We can even argue there should be a peripheral and central version of hyperacusis, but we don't know!
Pain in the trigeminal nerve may not be the same type of hyperacusis caused by the noiceptors connected to outer hair cells, we still don't know?

The average hyperacusis sufferer is an NPC riding the TRT/CBT carousel completely unaware that there voice could make a difference.

If my pain hyperacusis ever comes back I will not hesitate to kill myself.

How long did you have it for and when/how did it go away?

I think many times non-painful and painful hyperacusis can be linked and lead to one another. For example when I first developed it very little of it was painful. It's just that over time the pain related symptoms have emerged as the non-pain related ones worsen (TTTS, sound feeling louder at lower decibels = lower thresholds for discomfort/pain)

 

[dpdx]

I had H for a year now

 

[Marko Nakovski]

@Contrast What does it mean when someone has burning pain in the ears? How is this any different then other type of pains?

If one has those symptoms does that really mean the chances for recovering are slimmer or even not possible? I have this burning pain and it's killing me slowly ... My life is miserable in the past month and I don't see hope for me anytime soon Even when I'm not exposed to some sounds my ears still hurt.

Did you had the same type of pain when you had hyperacusis?

 

[dpdx]

@Contrast What does it mean when someone has burning pain in the ears? How is this any different then other type of pains?

If one has those symptoms does that really mean the chances for recovering are slimmer or even not possible? I have this burning pain and it's killing me slowly ... My life is miserable in the past month and I don't see hope for me anytime soon Even when I'm not exposed to some sounds my ears still hurt.

Did you had the same type of pain when you had hyperacusis?

has it gotten better?

 

[Johan_L]

How long did you have it for and when/how did it go away?

I think many times non-painful and painful hyperacusis can be linked and lead to one another. For example when I first developed it very little of it was painful. It's just that over time the pain related symptoms have emerged as the non-pain related ones worsen (TTTS, sound feeling louder at lower decibels = lower thresholds for discomfort/pain)

I agree. Started out as loudness H for me, men now the pain H has a lower threshold than the "Loudness gain". I can get pain from sounds that I don't perceive as especially loud... which makes everything even more difficult as I don't know what to avoid and not.

 

[Juan]

I can get pain from sounds that I don't perceive as especially loud...

That's normal with severe hyperacusis. Sometimes you get delayed pain or pain from sound you wouldnt expect to make your ears react like that.

 

[Rojo]

I agree. Started out as loudness H for me, men now the pain H has a lower threshold than the "Loudness gain". I can get pain from sounds that I don't perceive as especially loud... which makes everything even more difficult as I don't know what to avoid and not.

Yes this is exactly what I'm going through, it's awful. The consistent in-ear pain only started this week, after I drove 20 min total to see a doctor, then stopped by the CVS for 20 minutes for my prescription. Wore muffs and plugs the whole time, minus talking to the doctor in the quiet patient room (used plugs for even some of that though).

Got home and my ears were fucking dying. This is why I'm suicidal. It's so bad, and I am so sick, and I can't even go see doctors without spikes. I still aren't feeling any better and I'm scared I might not, my tendency has generally been downward.

Also just started daily microtapering off benzos so I may not feel good/better for a while if ever. Things are getting suicide-inducing very very quickly...

 

[Johan_L]

Yes this is exactly what I'm going through, it's awful. The consistent in-ear pain only started this week, after I drove 20 min total to see a doctor, then stopped by the CVS for 20 minutes for my prescription. Wore muffs and plugs the whole time, minus talking to the doctor in the quiet patient room (used plugs for even some of that though).

Got home and my ears were fucking dying. This is why I'm suicidal. It's so bad, and I am so sick, and I can't even go see doctors without spikes. I still aren't feeling any better and I'm scared I might not, my tendency has generally been downward.

Also just started daily microtapering off benzos so I may not feel good/better for a while if ever. Things are getting suicide-inducing very very quickly...

It feels like im getting more and more pain as well. I slept with earmuffs 2 weeks ago and something happened to my jaw, so cant wear them anymore. >>> Never sleep with earmuffs. Also wondering if the car rides are making it worse...

Anyways, your situation is different with the benzos. But.... You've had H for a short time so the prognosis is still good (or decent) for you.

 

[Marko Nakovski]

@Juan So you can listen to some sounds, your ears will not hurt at the moment and after one or even few days you can have delayed pain from those sounds as a cause?

 

[Marko Nakovski]

@Johan_L Had you tried staying in complete silence or maybe some low level sound of 30-35 dB to see if the pain will subside?

 

[dpdx]

@Contrast What does it mean when someone has burning pain in the ears? How is this any different then other type of pains?

If one has those symptoms does that really mean the chances for recovering are slimmer or even not possible? I have this burning pain and it's killing me slowly ... My life is miserable in the past month and I don't see hope for me anytime soon Even when I'm not exposed to some sounds my ears still hurt.

Did you had the same type of pain when you had hyperacusis?

Shame you went shooting, you were doing so well.

 

[Marko Nakovski]

@dpdx That's the most idiotic thing I have done for a while, maybe in my whole life.

I have had just tinnitus for 1 and a half year with very mild hyperacusis. Only very loud noises were hurting me, like nightclubs, drills and motorbikes with full gas but not unbearable pain. For example I could still go to bar for a 3-4 minutes without earplugs and soon after that I would feel some discomfort. (I've tried this just once).

Also the pain after some motorcycle passed nearby occurred at the same moment but nothing special, only some discomfort and nothing really happened. I went out however from time to time to some bars, mostly outdoors and nightclubs too but on few occasions.

From May to September/October I had been going out often and and very rarely in the winter because indoors my tinnitus spiked much more than outdoors.

Then out of nowhere I decided to try this idiotic idea just for once and I was blinded by the idea that - I have double protection, I have nothing to worry about. If I can go to bars with only earplugs many times, I can go to shoot with both earplugs and earmuffs. My logic turns out to be = BIG FAIL

 

[dpdx]

@dpdx That's the most idiotic thing I have done for a while, maybe in my whole life.

I have had just tinnitus for 1 and a half year with very mild hyperacusis. Only very loud noises were hurting me, like nightclubs, drills and motorbikes with full gas but not unbearable pain. For example I could still go to bar for a 3-4 minutes without earplugs and soon after that I would feel some discomfort. (I've tried this just once).

Also the pain after some motorcycle passed nearby occurred at the same moment but nothing special, only some discomfort and nothing really happened. I went out however from time to time to some bars, mostly outdoors and nightclubs too but on few occasions.

From May to September/October I had been going out often and and very rarely in the winter because indoors my tinnitus spiked much more than outdoors.

Then out of nowhere I decided to try this idiotic idea just for once and I was blinded by the idea that - I have double protection, I have nothing to worry about. If I can go to bars with only earplugs many times, I can go to shoot with both earplugs and earmuffs. My logic turns out to be = BIG FAIL

That sucks. I dont want to scare you but Hyperacusis can be permanent. I developed Hyperacusis after ear tests that were conducted on January 15, 2018 (ear syringing and loud 90db nHL ear test called cvemp)..as you can see it has been a year with Severe H and Severe T. The tests damaged inner cells in both ears. Please be careful we are very prone to damage now.

So what do you do these days,? Have you considered TRT? Mute Button? Neuromod?

 

[Rojo]

I'm really curious about peoples experience with TRT and white/pink noise therapy, since I still have an appointment with Pawel Jastreboff...

 

[Marko Nakovski]

@dpdx You mean severe hyperacusis can be permanent or generally speaking about hyperacusis?

I think that hyperacusis will never go away except if some cure comes along in the future. However even if it may not completely go away it can be a lot better if given enough time. At least this is what I hope for.

I'm aware that we can never ever go to loud events like nightclubs, cinema and we may have problems from loud noises over 90 dB but still we can have normal life. By this I means we can go to quiet restaurant, talking with people without problems, hear some normal sounds that are bellow 80 dB which wouldn't cause problems.


The only good thing in my situation is that my tinnitus isn't so severe like my hyperacusis. I mean it's worse after I developed hyperacusis but it isn't that bad like the pain I'm suffering.

Don't lose hope, even if you have had for 1 year that doesn't mean you can't improve to at least some moderate level in a couple of months or maybe half year

 

[Johan_L]

I'm really curious about peoples experience with TRT and white/pink noise therapy, since I still have an appointment with Pawel Jastreboff...

Me too. It's been debated over and over. It is pretty much impossible to understand what effect it may have since there is no decent research done (no control groups in the studies I've seen). Some people get better after starting TRT, but is the TRT or time that healed them?

Also, the big question is how many of us "category 4" patients that get worse from this treatment. Also, no data on that...

If you meet Pawel ask him about this.

 

[EDogg]

@Rojo

Glad to hear you have an appointment with Jastreboff. Keep it! He has treated many patients with Category 4. Follow his advice closely. Treating cat 4 can be tricky and needs to be done very carefully, perhaps in concert with other clinician involvement, medications or other therapy modalities . You can improve and get through this. Many people have recovered from severe H to live productive lives. Look at the success stories on various H sites. Many people improve with TRT or other sound desensitization programs. Yes, the studies are not gold standard, but it's impossible to do double blinded placebo controlled trials on TRT. Don't lose hope and hang in there. Just my opinion, but I'd maybe not tweak with your benzodiazepines at this time during a bad setback. Limit the number of variables involved here.

Best,
EDogg

 

[Rojo]

Difficult when those I'm dependent on are trying to force me off of them ASAP. Also, the pain in the ear is both awful and the facial neuralgia makes me think "acoustic shock" and somehow idk if Jastreboff can really help me...

I also can't afford Jastreboff despite having the appointment so theres that too.

 

[dpdx]

@dpdx You mean severe hyperacusis can be permanent or generally speaking about hyperacusis?

I think that hyperacusis will never go away except if some cure comes along in the future. However even if it may not completely go away it can be a lot better if given enough time. At least this is what I hope for.

I'm aware that we can never ever go to loud events like nightclubs, cinema and we may have problems from loud noises over 90 dB but still we can have normal life. By this I means we can go to quiet restaurant, talking with people without problems, hear some normal sounds that are bellow 80 dB which wouldn't cause problems.


The only good thing in my situation is that my tinnitus isn't so severe like my hyperacusis. I mean it's worse after I developed hyperacusis but it isn't that bad like the pain I'm suffering.

Don't lose hope, even if you have had for 1 year that doesn't mean you can't improve to at least some moderate level in a couple of months or maybe half year

Severe Hyperacusis can get better but Hyperacusis dosen't go away, it is permanent, it is caused by nerve damage in the ears.

 

[dpdx]

 

[dpdx]

@Marko Nakovski

 

[Adriel93]

@dpdx stop telling people that it can not go away. There's a people on this forum that's had their H go away. No need to bring others down, just cause yours hasn't gone away.

 

[dpdx]

@dpdx stop telling people that it can not go away. There's a people on this forum that's had their H go away. No need to bring others down, just cause yours hasn't gone away.

You are absolutely right! I apologize