Suicidal

[FGG]

I'm aching to get the hell out of here, but I have to finish my responsibilities.

I just wanted to say thanks for your passion and work for the tinnitus/hyperacusis community. I hope somehow things get better enough for you to hang in there but I didn't want that to go unsaid.

 

[MrCrybaby]

What about ear pain and crackling? I think the existence of this two conditions is a concern even if there was this ideal drug in the pipeline.

I have a hard time believing some amazing drug treatment would be available in such a short time. I think everyone here who has severe tinnitus would welcome and wait for a drug if it only took two years. But, it would have to be 100% certain of being effective and massive improvement whether that means drastic improvement of practically eliminating the tinnitus. So, either reducing to mild t or nothing. I think researchers would release some news but I haven't read anything here. It's just a fantasy.

Science doesn't understand the pain and crackling and what causes it very well, so there is no way to know if hair cell regeneration will fix it.

There is more intense regenerative tech in pre clinical that I think have a strong chance of resolving more complex/poorly understood hearing/ear problems that the currently trial drugs do not. They will be here in the 2030s, assuming science continues to advance at the current pace. Look into Chen from Harvard's research and Decibel's LATS pathway to learn about these developments. Also Lieberman, who is pretty much paving the way for science on synaptopathy and noise induced pain.

That said, even partial regeneration (eg just hair cells) will likely result in major symptom improvement. It could make waiting for the "full cure" much more bearable.

 

[Daniel Lion]

When you have to circle the 0 on the survey your doctor gives you about feelings about self harm but you're a 4 on the daily. Doctor was a waste of time but that was a given. Audiology appointment next week.

Let us know how the ENT trip goes. Tell them you have hyperacusis and don't want any pressure tests. This crap takes a long time... you are 3 months in... a lot can change for the better over the next 9 months. Praying for you... hope the ear flutterings stop asap...

 

[Orions Pain]

Let us know how the ENT trip goes. Tell them you have hyperacusis and don't want any pressure tests. This crap takes a long time... you are 3 months in... a lot can change for the better over the next 9 months. Praying for you... hope the ear flutterings stop asap...

I am actually just seeing an audiologist I believe. I don't think ENT's can help me my at this point as I've seen two. I'm mostly going to get my custom plugs. Plus the last time I saw an Audiologist I didn't have too much hyperacusis, mostly thought it was anxiety.

I'm also interested in seeing how much my hearing has changed. Perhaps I can get an extended test. Hoping for something good.

 

[PeteJ]

I just wanted to say thanks for your passion and work for the tinnitus/hyperacusis community. I hope somehow things get better enough for you to hang in there but I didn't want that to go unsaid.

Good post, FGG. Contrast is a good person and a smart guy. I hate how he is treated. It pisses me off. But, I can't do anything about it. Those people might have tinnitus or whatever but it can't be bad when they reply the way they do (to him).

 

[PeteJ]

I cooked a pretty good dinner. I don't have a lot of money but I had help with some groceries. I baked rainbow trout fillets with asparagus, tomatoes and lemon slices. During this time and briefly after, my tinnitus went from the usual 10/10 severity down to, say, 8/10. Not a lot but I could tell it was an improvement. This is what is so frustrating. I hardly ever have fluctuations and when I do, they don't last long. I don't know why (it happens like this). The constant left ear pain continues, also, and is in the 2nd week. It feels like I was shot there. These are the reasons I don't care to live anymore.

 

[Capstan]

Thank you for your kind words. I am struggling greatly because all of the people in know in real life who have tinnitus seem like they're dealing with a different version than me. They just have the classic eeeee in silent rooms.

Yuuls mine has become this somehow this week. I used to have manageable T but now just like yours. It's gotten so bad. Don't feel your alone.

 

[Contrast]

Science doesn't understand the pain and crackling and what causes it very well, so there is no way to know if hair cell regeneration will fix it.

There is more intense regenerative tech in pre clinical that I think have a strong chance of resolving more complex/poorly understood hearing/ear problems that the currently trial drugs do not. They will be here in the 2030s, assuming science continues to advance at the current pace. Look into Chen from Harvard's research and Decibel's LATS pathway to learn about these developments. Also Lieberman, who is pretty much paving the way for science on synaptopathy and noise induced pain.

That said, even partial regeneration (eg just hair cells) will likely result in major symptom improvement. It could make waiting for the "full cure" much more bearable.

This user is my successor.

It will be said @MrCrybaby is the successor to the late Contrast.

 

[Andrei90]

Condition continues to worsen. I'm slowly losing hearing but my tinnitus has gotten exponentially worse. My hiss which has gotten louder and louder is now joined by 2-3 pure tones. For a few weeks they barely could penetrate the hissing noise in my head but they're ready to take over soon. I now understand the hell you guys must be going through. My hiss wasn't nearly this intrusive and my visual snow is progressing too. So much fun.

 

[Capstan]

Yuuls mine has become this somehow this week. I used to have manageable T but now just like yours. It's gotten so bad. Don't feel your alone.

Didnt think I'd be in this thread but here I am. My ears hurt so much. I am battling reactive T, hyperacusis, and dysacusis. Everything sounds metallic, fans and humming is invasive. I can't even shower now without the faucet making my T to become an electrical storm. God please help me. I've scoured this forum and there's success stories for some of what I'm experiencing but I've not found a success for the combination of everything I'm dealing with right now. It's sooooo loud now.

 

[Capstan]

Didnt think I'd be in this thread but here I am. My ears hurt so much. I am battling reactive T, hyperacusis, and dysacusis. Everything sounds metallic, fans and humming is invasive. I can't even shower now without the faucet making my T to become an electrical storm. God please help me. I've scoured this forum and there's success stories for some of what I'm experiencing but I've not found a success for the combination of everything I'm dealing with right now. It's sooooo loud now.

@Michael Leigh

Thank you for the hug. Please add to your guidance to avoid self therapy with white and pink noise volumes need set with a professional. I used speakers and it was too much for my ears with the amount of hearing loss I already had. I consider white and pink a full assault on your hearing since it covers the full spectrum. I failed. Please advise others. I may not be here to do so.

 

[Kriszti]

My newish sound increased or just got my attention, I don't know, but spiralled me into monitoring and freaking out again. I don't have the slightest idea what triggered it. I'm really afraid to be back at square one. I've been doing slightly better tinnitus wise besides other worrysome circumstances, but now I feel awful again.

 

[Gabriel5050]

I raise to your hisses, buzzing and rings my clicking that joined the party dance floor. I used to be able to hear the clicking only at night or maybe if I focus. You guys have my compassion. May God help us.

 

[Michael Leigh]

@Michael Leigh

Thank you for the hug. Please add to your guidance to avoid self therapy with white and pink noise volumes need set with a professional. I used speakers and it was too much for my ears with the amount of hearing loss I already had. I consider white and pink a full assault on your hearing since it covers the full spectrum. I failed. Please advise others. I may not be here to do so.

HI @Capstan

I am sorry to know you are going through a difficult time at the moment. I have mentioned many times in this forum that white and pink noise should be properly administered into the ear using white noise generators and ideally, one should be under the care of a Hearing Therapist or Audiologist when undergoing this kind of treatment, as counselling may also be required and to use WNG correctly.

Some people have challenged me on this which they have every right to and say: White noise generators are very expensive and finding a Therapist is the same. Therefore, some have tried treating their oversensitivity to sound (hyperacusis) themselves. Unfortunately, some have reported in this forum and send me private messages, that their tinnitus and hyperacusis were aggravated playing white noise through headphones or speakers.

I understand the reasons someone wants to try self-help and if it works I wish them all the best. However, the ear and auditory system are very delicate and playing white or pink noise into the ear and not using proper devices intended for such purposes is risky. I have used white noise generators for over 20 years and never had any problems with them. I have played white noise through headphones and found the sound to be: crude, abrasive and unregulated. White noise generators sound completely different when used correctly. The sound is smooth and comforting and causes no irritation at all.

White noise generators should be introduced to the ear and auditory system slowly as irritation might occur if they are placed on the ears and used continuously for 6hrs or more. It is better to start off by wearing them for 1 or 2hrs then take them off for the same duration. Place them on again and build up the wearing time slowly until they can be worn continuously for 8 to 10hrs a day. Some people are quick to say: "White noise generators" do not suit everyone and this is true. However, it is also true that a lot of people do not have the patience and want quick results. This is the wrong approach.

Someone I was recently in contact with was told by his Audiologist who specialises in hyperacusis treatment. All her patients that have hyperacusis (oversensitivity) to sound have been cured following her treatment programme. That is using one white noise generator and not two. Treatment lasts up to 18 months and counselling is given. She said the only people that do not do well, are the those that do not follow the treatment programme.

Michael

 

[MrCrybaby]

Didnt think I'd be in this thread but here I am. My ears hurt so much. I am battling reactive T, hyperacusis, and dysacusis. Everything sounds metallic, fans and humming is invasive. I can't even shower now without the faucet making my T to become an electrical storm. God please help me. I've scoured this forum and there's success stories for some of what I'm experiencing but I've not found a success for the combination of everything I'm dealing with right now. It's sooooo loud now.

If this was set off by sound therapy it may just be a spike. As for example some experience temporary worsening from Tinnitus Mix. Resting your ears will give you the best chance for symptoms to improve.

 

[Juan]

Finding it harder and harder to hang in there. 3 months in and this keeps worsening. Hyperacusis despite avoiding loud places and not overprotecting. TTTS more often. Life ruined at 25.

Your hyperacusis is very recent. It is very likely that it gets more stable over time. Try to have sound around at home, music or white noise. Try to go every day to a place where you can walk, run or do some exercise in open air, like a big park, the beach, forest, and if you can be at that place without earplugs it would be best to get more confident. I have done that, I have been where you are, and carried on. It has been very hard, but you will find your way.

 

[Capstan]

HI @Capstan

I am sorry to know you are going through a difficult time at the moment. I have mentioned many times in this forum that white and pink noise should be properly administered into the ear using white noise generators and ideally, one should be under the care of a Hearing Therapist or Audiologist when undergoing this kind of treatment, as counselling may also be required and to use WNG correctly.

Some people have challenged me on this which they have every right to and say: White noise generators are very expensive and finding a Therapist is the same. Therefore, some have tried treating their oversensitivity to sound (hyperacusis) themselves. Unfortunately, some have reported in this forum and send me private messages, that their tinnitus and hyperacusis were aggravated playing white noise through headphones or speakers.

I understand the reasons someone wants to try self-help and if it works I wish them all the best. However, the ear and auditory system are very delicate and playing white or pink noise into the ear and not using proper devices intended for such purposes is risky. I have used white noise generators for over 20 years and never had any problems with them. I have played white noise through headphones and found the sound to be: crude, abrasive and unregulated. White noise generators sound completely different when used correctly. The sound is smooth and comforting and causes no irritation at all.

White noise generators should be introduced to the ear and auditory system slowly as irritation might occur if they are placed on the ears and used continuously for 6hrs or more. It is better to start off by wearing them for 1 or 2hrs then take them off for the same duration. Place them on again and build up the wearing time slowly until they can be worn continuously for 8 to 10hrs a day. Some people are quick to say: "White noise generators" do not suit everyone and this is true. However, it is also true that a lot of people do not have the patience and want quick results. This is the wrong approach.

Someone I was recently in contact with was told by his Audiologist who specialises in hyperacusis treatment. All her patients that have hyperacusis (oversensitivity) to sound have been cured following her treatment programme. That is using one white noise generator and not two. Treatment lasts up to 18 months and counselling is given. She said the only people that do not do well, are the those that do not follow the treatment programme.

Michael

Thanks Michael. My central gain has gone way up. I failed. Not sure what I can do now. My stupid ENT recommended I try it to help with my tinnitus. What a mistake.

 

[Michael Leigh]

Thanks Michael. My central gain has gone way up. I failed. Not sure what I can do now. My stupid ENT recommended I try it to help with my tinnitus. What a mistake.

@Capstan

I am sorry to hear that. Please don't give up as I don't think all is lost. Your ENT doctor was trying his or her best. They are physicians not tinnitus or hyperacusis specialists. If you are able to see an Audiologist that specialises in Tinnitus & Hyperacusis treatment I think it would help you.

 

[MrCrybaby]

Thanks Michael. My central gain has gone way up. I failed. Not sure what I can do now. My stupid ENT recommended I try it to help with my tinnitus. What a mistake.

Central gain is the most likely form of hyperacusis to improve from hair cell drugs like FX-322.

 

[Capstan]

If this was set off by sound therapy it may just be a spike. As for example some experience temporary worsening from Tinnitus Mix. Resting your ears will give you the best chance for symptoms to improve.

My problem right now is central gain being turned up. My hearing was odd after sound therapy. It wasn't fullness but it was different.

 

[Capstan]

Central gain is the most likely form of hyperacusis to improve from hair cell drugs like FX-322.

I worry that broad spectrum has damaged lower frequencies that fx322 won't hit at least immediately.

 

[Capstan]

@Capstan

I am sorry to hear that. Please don't give up as I don't think all is lost. Your ENT doctor was trying his or her best. They are physicians not tinnitus or hyperacusis specialists. If you are able to see an Audiologist that specialises in Tinnitus & Hyperacusis treatment I think it would help you.

I live in America you'd think it would be easier. We're so messed up with Audiologists working for ENTs. If they don't, they push hearing aids. I need to find someone quickly.

 

[Michael Leigh]

I live in America you'd think it would be easier. We're so messed up with Audiologists working for ENTs. If they don't, they push hearing aids. I need to find someone quickly.

I have corresponded with people from across the pond @Capstan and I know what you say is quite true. I wish you luck and hope you find someone soon.

Michael

 

[FGG]

I worry that broad spectrum has damaged lower frequencies that fx322 won't hit at least immediately.

This is completely my speculation, but I think if you have IHC damage, FX-322 seems like it might work lower than the "3500 Hz and up" range because there are more LGR5+ support cells (the substrate for the progenitor cell activators) around IHC vs OHC. So, if you don't have actual audiogram changes at the low frequencies, I think version 1.0 could still help.

 

[Orions Pain]

My anxiety is SO bad today. I keep on replaying the last few years over and over in my head, the concerts, the loud places

I used headphones daily for up to 5-6 hours, sometimes more on weekends to block out noise from neighbors. The damage I must have did. Now I have Hyperacusis that seems to be progressing and I don't know where to turn. It's impossible to actually see how much damage I've done but I'm sure it's a lot. How do I live with myself? I feel absolutely sick to my stomach. What do I do? I use the phone at work a good amount, is that making it worse?

Do I just wear ear plugs everywhere? Have I been underprotecting despite avoiding loud places? I am going absolutely Crazy and I am terrified.

Everyone says stop self diagnosing, the people on the forums are crazy, you're not a doctor, etc etc. Doctors can't help since they're in the dark with this. Hard to believe stories on Hyperacusis websites praising TRT, who writes these reviews. This is actually hell, I can't escape

 

[Capstan]

This is completely my speculation, but I think if you have IHC damage, FX-322 seems like it might work lower than the "3500 Hz and up" range because there are more LGR5+ support cells (the substrate for the progenitor cell activators) around IHC vs OHC. So, if you don't have actual audiogram changes at the low frequencies, I think version 1.0 could still help.

Hard to say since my central gain got turned up this week. I had tested with a mobile audio test right before and my audiogram looked similar. However yesterday's neuroloplaciticy has increased changed it. My 1000 hz is now able to hear at much lower db. Not sure what to think.

I will say that low freq weren't a problem before. My hyperacusis seems to actually amp low frequencies. It probably means my notch around 4k is beaten up.

 

[Autumnly]

Hard to believe stories on Hyperacusis websites praising TRT, who writes these reviews.

As far as I know, Chat Hyperacusis is being heavily moderated and anti-TRT sentiments will quickly get deleted and users blocked. Rob seems to believe pain-hyperacusis is mainly a mental health issue and people just need to let go of their fear of sounds, he's made several posts implying fear is the main issue.

Bryan Pollard from Hyperacusis Research said on a recent Tinnitus Talk Podcast episode:

• In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.
• With pain hyperacusis, earlier this year in talk on treatment for pain hyperacusis, the spokesperson said that we treat pain hyperacusis completely independently now from loudness hyperacusis and it requires a much more tailored approach and, also, we typically don't expect the same outcomes as we do with loudness hyperacusis.

Just want to make this clear: I'm not saying TRT didn't help those people but it doesn't help everyone with pain-hyperacusis and Chat Hyperacusis is very biased when it comes to TRT.

How do I live with myself?

What helped me was to remember that I simply didn't know how much damage I was causing. If you had known what kind of damage you were causing, you most likely would have acted differently. Also, just because you're struggling now, doesn't have to mean it won't get better for you.

 

[FGG]

Hard to say since my central gain got turned up this week. I had tested with a mobile audio test right before and my audiogram looked similar. However yesterday's neuroloplaciticy has increased changed it. My 1000 hz is now able to hear at much lower db. Not sure what to think.

I will say that low freq weren't a problem before. My hyperacusis seems to actually amp low frequencies. It probably means my notch around 4k is beaten up.

From what I have been able to deduce, with OHC loss, I don't think central gain alone could compensate for audiogram changes. I.e. to my knowledge it has not been reported that central gain can make a 40 dB loss look like 30 dB, etc.

This might belong on a different thread, but when you say that your 1000 Hz audiogram improved, do you mean versus acute measurements? Often when the initial inflammation affecting OHCs dies down acutely, audiograms get better (even if say any potential synaptic and/or IHC damage may not have improved). Now if you had a long standing chronic dip that improved that would be extremely unusual...

 

[dan]

I tapered to zero pregabalin 8 days ago. I have been off the supporting benzo (taken one week) for three days but the tinnitus is unbearable. Even walking outside has become very hard. I shake. I don't sleep more than 2h/3h per night.

I'm having very dark thoughts. Anxiety and depression. I am worrying for my kids.

Tinnitus should improve slowly after withdrawal.

 

[Capstan]

From what I have been able to deduce, with OHC loss, I don't think central gain alone could compensate for audiogram changes. I.e. to my knowledge it has not been reported that central gain can make a 40 dB loss look like 30 dB, etc.

This might belong on a different thread, but when you say that your 1000 Hz audiogram improved, do you mean versus acute measurements? Often when the initial inflammation affecting OHCs dies down acutely, audiograms get better (even if say any potential synaptic and/or IHC damage may not have improved). Now if you had a long standing chronic dip that improved that would be extremely unusual...

My 1000 improved from 30db to 10db. It was marketed. I hear crazy better - too much so. My high frequencies are pretty muted to be honest. I lost that in the last few days. So in theory the loss of high did central gain and made low fq too loud. So getting OHC to regenerate may help turn down low fq that began to bother me.

Of note, I had a really bad buzz in my right ear last week. I thought it was T because of my recent spike. Well when the buzz went away, I had a quite for the afternoon. I thought piece at last! But two days later, my T came back and began hearing low fq sounds way too well. I think it means the high fq are most damaged since im having trouble hearing those now.