Severe Noxacusis (Pain Hyperacusis) — Feels Like My Life Is Over

[TheFriendlyGhost]

Hi,

I recently developed severe noxacusis. Looking for support and advice.

Here is my story:

For about 10 years, I have had problems with crackling in my ears when I swallow or yawn. Every time I swallow or yawn, my ears crackle.

In November 2018, I woke up one day with tinnitus after listening to loud music in headphones the day before. I went to see a doctor and he diagnosed me with an ear infection and a wax plug. I had the wax removed using microsuction.

I begin to notice that I find loud environments very uncounterable.

A few months later, I see an ENT and an audiologist for a hearing test. I was found to have no hearing loss and the tinnitus was deemed idiopathic.

A few months later I am standing near a dog when it screams very loudly. After this, I felt pain in my left ear pretty much all the time. This subsides after about 2 weeks. After this event, I also developed what I think is TTTS. It slowly subsided for about 2 years and I did not think about it anymore after it disappeared.

In October 2022, I was exposed to a 2-year-old screaming very loud close to me and have since then experienced worsened hyperacusis (many sounds sound louder than before and some sounds cause pain in the ears), but I also got my TTTS back, but this time much worse than the first time. It feels just like a muscle in the ear has spasm. If I cover my ears, I can hear this sound that sounds like a helicopter, a bass-like sound. When I hear certain sounds, such as water running from the tap or a piece of paper being crumpled, this sound becomes strong and that is when it is particularly annoying. The sound can also occur when, for example, children speak or when someone speaks a little louder than normal.

After this incident, I had a constant feeling of fullness in my left ear, which I feel is the ear that was most affected. I also feel more jaw tension and increased stress after this incident, probably due to fear of loud or sudden noises. If I am in a quiet room and hear a sudden noise (which does not have to be loud at all) my body reacts strongly.

About 2 weeks after this event, I had an ear syringing done (due to a wax plug) and after this, my tinnitus became much worse and I had varying degrees of pain and filling sensation in both ears daily. Previously, I hardly noticed my tinnitus in my left ear unless I, for example, put my head on a pillow in a quiet room. After the ear syringing my tinnitus became louder and two new types of sounds were heard. One of these sounds is heard when I make movements with my body such as walking or turning my head and arm. I perceive it as coming from the back of my neck. After the ear syringing, my tinnitus also varies greatly in volume. If someone is standing close to me and talking, my tinnitus can become extremely loud and spike for a few seconds, and it becomes impossible to ignore. My tinnitus has also become more reactive, in the sense that it tries to sound louder than sounds that I hear. I also experienced dizziness for 2-3 days after the ear syringing.

The pain and filling sensation in my ears subsided after 1-2 months, but I have had a harder time dealing with my tinnitus.

In mid-January this year, I noticed one morning that putting a plate down on the sink made my ear hurt. I notice after this that many sounds start to hurt, without being particularly loud. Especially high-frequency sounds. I have no explanation for why it suddenly got so much worse. I hit my head pretty hard 1-2 weeks earlier, but I don't know if that could possibly have any effect. It wasn't a concussion and I was wearing a helmet.

At the beginning of March this year, my girlfriend accidentally smashes cutlery against a plate, creating an extremely loud noise that even my girlfriend, who is not sensitive to sound, gets pain from. This further escalates my problems.

Now almost every sound hurts me. I no longer want to leave the apartment because sound hurts even with earplugs. I also find that earplugs create a loud thumping sound with every step I take, and my own voice also sounds way too loud. I cook with my earmuffs on, but it still hurts. Showering hurts terribly. I have started showering with earplugs, but it still hurts. I also get pain from my own voice, which makes it difficult to talk.

My jaw is constantly tense due to fear of sound and pain from sound. I catch myself several times a day clenching my teeth. This has also caused me to have pain in some teeth from time to time. My tinnitus and pain often make it difficult for me to be fully focused in conversations and when reading longer texts.

I now feel very down and don't see the point of living anymore. I can't enjoy or look forward to anything. I no longer want to see or talk to friends and family because it hurts and I can't do anything outside the home and even small noises in the home hurt. I even have pain when it is quiet, although the pain is low if I am in a quiet room for a while. It hurts to watch TV even if I have the lowest possible volume to hear speech. My tinnitus always tries to drown out any sound. I live completely isolated in my apartment and still can barely stand the pain.

I have cried several times, realizing that I will probably have to end my relationship with my girlfriend and not be able to talk to my family without pain.

Every time I wake up, I can't wait for the day to be over so I can go back to sleep. My life is all about my ears and it is painful to live.

I have an appointment with an ENT and audiologist in 2 weeks. I will perform a hearing test, which I am extremely afraid will make my noxacusis even worse.

I don't understand how I can live like this for the rest of my life. Is there anyone who has been in the same situation as me who can offer some advice?

 

[Brian Newman]

I'm sorry for what you're going through.

My pain never stops and I get severe pain from 20 dB sounds if they're the right frequency. I've been housebound for 2 years.

Don't go to the ENT or do any hearing tests. You need to stay home and rest your ears for an extended period of time. You're pretty early in this and you have lots of room for improvement, your life probably isn't over. You need to accept you will probably have it forever but it can definitely get very livable for a lot of people. All the people improved a lot who got it bad around the same time I did. You will get smarter as time goes on. When you're around people, wear hearing protection. When you have noxacusis, people and animals are your enemy. Don't trust them because accidents happen. You probably don't have to break up with your girlfriend but you need to make her understand noxacusis is a very serious condition and needs to be treated aggressively. She needs to understand you will be out of commission for a while and if she's around you, she needs to be really quiet.

It takes a special partner to date somebody with noxacusis. Even if I was a little better, I still wouldn't date. Most girls my age want to go to restaurants, travel, clubbing, beach, pretty much anything I can't do. All I can do is sit in my room and go for walks and short runs at 2am. Other than that I can't do anything. So hopefully your girlfriend likes to relax because if she doesn't, it will be a big issue.

My best advice to new noxacusis sufferers is:

#1: avoid all sound that causes pain. Let your ears rest. Don't buy into that sound therapy crap because it does not help true noxacusis cases.

#2: don't catastrophize just yet, especially if you haven't had it for very long. A lot can happen in a few years so it's not over yet.

And if you think it's bad now, it can get so much worse. There's literally no limit to how bad it can get and I completely understand why you feel the way you feel. It's truly one of the worst conditions you could ever get. If you can be pain free in your home, you need to accept that no matter what, even if you can't go places. Yes, you will lose everything, career, hobbies, friends, maybe girlfriend, most things you love, and it will be boring, and torturous watching every day, week, month go by while you rot in a room. But it sure as hell beats severe pain that never stops from noxacusis. Mine has gotten so bad that my great days are the days my pain is low and I'm happy sitting in a room all day playing Xbox, trading, watching TV, running at night and then going to bed. I can survive like this. When mine gets bad, my pain is severe, nonstop, for months because my tolerances are so low.

It's heaven not being in severe pain in silence.

So hang in there, it's going to suck but give it time and silence. You might improve a good amount. You're going to have to make changes in your life for a while but it's worth it. If you have to be around noise, just be extremely careful. I got way worse not believing my phone or TV at the lowest volume was worsening me. If you're getting long lasting lingering pain, that means your ears can't tolerate that noise and you should avoid it. This would have kept me from getting as bad as I am.

 

[TheFriendlyGhost]

@Brian Newman, thanks for your reply.

I'm sorry to hear about your situation. I agree with you, this is one of the worst conditions you could ever get.

I've been thinking about trying to avoid the hearing test, but can a visit to the ENT really be that dangerous? I have lived in the hope that the ENT might be able to help me in some way.

May I ask how long you have had severe noxacusis, what improvements you have seen, and how old you are?

When you say avoid all sounds that cause pain. Do you mean pain as in pain that will stay for hours or more, or even pain that vanishes after a few seconds/minutes? The reason I'm asking is that water running from the tap can cause pain even though I'm wearing earmuffs. Even flushing the toilet can cause pain. But this pain usually goes away quite quickly.

If I were to avoid all sounds that cause pain, I would have to use double protection all the time. My ear canals would probably get very irritated and since I have a lot of wax production, I also try to avoid getting wax plugs, which earplugs increase the risk of. I'm already using earmuffs 80-90% of my waking hours.

May I ask if you have a job? If not, how do you survive without an income? I have the privilege of being able to work 100% from home right now. I have meetings online a few times a week, but keep the volume on the computer as low as possible and try to cope with the pain that may arise. I don't know what I would do if I couldn't work. It's what gets me up in the morning.

A few other questions:

• Have you tried any supplements or medications that have helped you?
• Do you ever visit the dentist? It feels like the teeth will create serious problems if you avoid going to the dentist for too long. It just feels like earplugs would amplify the sound when the dentist is working in your mouth.
• Do you ever visit the hairdresser?
• Do you ever take a shower?
• Do you use earplugs when you're out walking or jogging? I hear a loud throbbing sound with every step I take when wearing earplugs (even worse with earmuffs), but don't know if it's just the earplugs I use?

 

[yeezysqueezy]

Hi @TheFriendlyGhost. Just wanted to drop in and say I am here with you. It seems like our pain hyperacusis started around the same time and we're hopefully in the worst of it right now. I also can't handle my own voice right now which has been mental torture barely being able to communicate with friends/family. Not sure how I'll ever be able to stand my own voice with earplugs in with the occlusion effect.

For the booming you hear walking around with earplugs, there's no way to get rid of it completely. It's much better if you use deeply inserted foam earplugs. I have some silicone "Loop Quiet" earplugs and my footsteps are insanely loud with those. I wonder if it could even cause worsening but some of the veterans on here might be better able to comment on that.

 

[Brian Newman]

@Brian Newman, thanks for your reply.

I'm sorry to hear about your situation. I agree with you, this is one of the worst conditions you could ever get.

I've been thinking about trying to avoid the hearing test, but can a visit to the ENT really be that dangerous? I have lived in the hope that the ENT might be able to help me in some way.

May I ask how long you have had severe noxacusis, what improvements you have seen, and how old you are?

When you say avoid all sounds that cause pain. Do you mean pain as in pain that will stay for hours or more, or even pain that vanishes after a few seconds/minutes? The reason I'm asking is that water running from the tap can cause pain even though I'm wearing earmuffs. Even flushing the toilet can cause pain. But this pain usually goes away quite quickly.

If I were to avoid all sounds that cause pain, I would have to use double protection all the time. My ear canals would probably get very irritated and since I have a lot of wax production, I also try to avoid getting wax plugs, which earplugs increase the risk of. I'm already using earmuffs 80-90% of my waking hours.

May I ask if you have a job? If not, how do you survive without an income? I have the privilege of being able to work 100% from home right now. I have meetings online a few times a week, but keep the volume on the computer as low as possible and try to cope with the pain that may arise. I don't know what I would do if I couldn't work. It's what gets me up in the morning.

A few other questions:

• Have you tried any supplements or medications that have helped you?
• Do you ever visit the dentist? It feels like the teeth will create serious problems if you avoid going to the dentist for too long. It just feels like earplugs would amplify the sound when the dentist is working in your mouth.
• Do you ever visit the hairdresser?
• Do you ever take a shower?
• Do you use earplugs when you're out walking or jogging? I hear a loud throbbing sound with every step I take when wearing earplugs (even worse with earmuffs), but don't know if it's just the earplugs I use?

Go read my thread, it's a few threads down (called Warning for People with Noxacusis: For the Love of God, Protect Your Ears), it has my profile picture on it. You can read about my story there more in depth if you want.

I've had it about 2 years now and it only gets worse. It seems after every worsening I get baby improvement, then it gets worse again.

I am on low dose Naltrexone; it helps with the pain. I take CBD. When I could go to weekly acupuncture sessions, that helped a lot too.

I did go to the dentist twice while having this because my hygienist is very accommodating, quiet and manually does everything. I haven't been in a year now but I take very good care of my teeth and I have a plaque scraper which will keep me from getting cavities. I recommend it.

Hairdresser? Nah, I did go to the barber in 2021 a few times before I got really bad but I don't leave my house so I don't care about my hair. I shower whenever I want to, I don't see people anymore, I don't go anywhere, barely leave my room so no point in showering unless I have to. I can shower though, it's not a bad frequency for me. I got a little tolerance to certain frequencies but anything from a computer, TV or phone is a no go. And my ears get severe pain from high pitch sounds at any volume.

When I run, I go at 2 am and run with Peltors but I have to hold them tight on my bad ear; that stops the occlusion effect. My right ear can be exposed to low noise, it's not as bad.

Most people with hyperacusis complain about the pain but I don't consider it severe pain hyperacusis if the pain doesn't linger. I know a few people who get the same sensation as me but it doesn't linger so this is a very important factor. It makes it 100x worse. If your pain is going away right away, that's a good sign. Mine varies. Like my mom tearing paper will cause me pain through double protection but it only hurts for a minute and goes away. When I hear a squeaking door, I get deep stabbing that lasts for days and it usually worsens me. All depends on the sound.

Do your best to avoid sounds that give you worse and longer lasting pain. That is important. People with hyperacusis freak out about sounds that only cause discomfort and they avoid those sounds. Discomfort isn't pain and it doesn't need to be worried about. When it turns into lingering pain, that's when you worry. All noise is uncomfortable and "hurts" but I can take it. It's the severe nerve pain that lingers that's killing me.

So yeah man, I cannot work, I'm lucky my family is supportive. I had to give up my career. Pretty much everything. I have nothing left. My pain never stops. Before, as long as I was in quiet, I was pain free. After following Jastreboff's protocol, things became a disaster. Ever since last November 2021 my pain has never stopped, even in silence. The more noise I'm around, the more pain I get and the longer it lasts. Nobody could live with the pain I'm in. I'm in bed most of the time and cannot function very often.

I wish I had better advice but I would say avoid noise for a while and slowly ease back into quiet things. I was pretty much destined to be one of the worst cases on the planet. Not sure if I could have stopped it or not. My luck just kept running out.

 

[TheFriendlyGhost]

Hi @TheFriendlyGhost. Just wanted to drop in and say I am here with you. It seems like our pain hyperacusis started around the same time and we're hopefully in the worst of it right now. I also can't handle my own voice right now which has been mental torture barely being able to communicate with friends/family. Not sure how I'll ever be able to stand my own voice with earplugs in with the occlusion effect.

For the booming you hear walking around with earplugs, there's no way to get rid of it completely. It's much better if you use deeply inserted foam earplugs. I have some silicone "Loop Quiet" earplugs and my footsteps are insanely loud with those. I wonder if it could even cause worsening but some of the veterans on here might be better able to comment on that.

Thanks for your reply. Feels good to know I'm not alone with this condition.

I really hope for an improvement over time. I would be happy if I can just leave the house with earplugs without pain and to be able to talk without pain.

When I have my earmuffs on, I slide on the floor rather than walk, to avoid the booming. Must look pretty fun.

Go read my thread, it's a few threads down (called Warning for People with Noxacusis: For the Love of God, Protect Your Ears), it has my profile picture on it. You can read about my story there more in depth if you want.

I've had it about 2 years now and it only gets worse. It seems after every worsening I get baby improvement, then it gets worse again.

I am on low dose Naltrexone; it helps with the pain. I take CBD. When I could go to weekly acupuncture sessions, that helped a lot too.

I did go to the dentist twice while having this because my hygienist is very accommodating, quiet and manually does everything. I haven't been in a year now but I take very good care of my teeth and I have a plaque scraper which will keep me from getting cavities. I recommend it.

Hairdresser? Nah, I did go to the barber in 2021 a few times before I got really bad but I don't leave my house so I don't care about my hair. I shower whenever I want to, I don't see people anymore, I don't go anywhere, barely leave my room so no point in showering unless I have to. I can shower though, it's not a bad frequency for me. I got a little tolerance to certain frequencies but anything from a computer, TV or phone is a no go. And my ears get severe pain from high pitch sounds at any volume.

When I run, I go at 2 am and run with Peltors but I have to hold them tight on my bad ear; that stops the occlusion effect. My right ear can be exposed to low noise, it's not as bad.

Most people with hyperacusis complain about the pain but I don't consider it severe pain hyperacusis if the pain doesn't linger. I know a few people who get the same sensation as me but it doesn't linger so this is a very important factor. It makes it 100x worse. If your pain is going away right away, that's a good sign. Mine varies. Like my mom tearing paper will cause me pain through double protection but it only hurts for a minute and goes away. When I hear a squeaking door, I get deep stabbing that lasts for days and it usually worsens me. All depends on the sound.

Do your best to avoid sounds that give you worse and longer lasting pain. That is important. People with hyperacusis freak out about sounds that only cause discomfort and they avoid those sounds. Discomfort isn't pain and it doesn't need to be worried about. When it turns into lingering pain, that's when you worry. All noise is uncomfortable and "hurts" but I can take it. It's the severe nerve pain that lingers that's killing me.

So yeah man, I cannot work, I'm lucky my family is supportive. I had to give up my career. Pretty much everything. I have nothing left. My pain never stops. Before, as long as I was in quiet, I was pain free. After following Jastreboff's protocol, things became a disaster. Ever since last November 2021 my pain has never stopped, even in silence. The more noise I'm around, the more pain I get and the longer it lasts. Nobody could live with the pain I'm in. I'm in bed most of the time and cannot function very often.

I wish I had better advice but I would say avoid noise for a while and slowly ease back into quiet things. I was pretty much destined to be one of the worst cases on the planet. Not sure if I could have stopped it or not. My luck just kept running out.

I have now read your thread. It was a sad read. Very sad that you have to live with this.

May I ask what CBD you use?

Must be difficult to press the earmuffs against your ear while running. By the way, what Peltors are you using? I use the X4A, but find it starts to hurt after 30 minutes, so I should probably look for some that are kinder to the ear.

I have had burning pain in my left ear for a day, but you must be in worse pain than me. How do you manage to sleep?

Thanks for your advice. I suffer with you. Hopefully there will be something that can cure or at least alleviate the problems significantly in the coming years. Are you aware of any promising research?

 

[Brian Newman]

Thanks for your reply. Feels good to know I'm not alone with this condition.

I really hope for an improvement over time. I would be happy if I can just leave the house with earplugs without pain and to be able to talk without pain.

When I have my earmuffs on, I slide on the floor rather than walk, to avoid the booming. Must look pretty fun.

I have now read your thread. It was a sad read. Very sad that you have to live with this.

May I ask what CBD you use?

Must be difficult to press the earmuffs against your ear while running. By the way, what Peltors are you using? I use the X4A, but find it starts to hurt after 30 minutes, so I should probably look for some that are kinder to the ear.

I have had burning pain in my left ear for a day, but you must be in worse pain than me. How do you manage to sleep?

Thanks for your advice. I suffer with you. Hopefully there will be something that can cure or at least alleviate the problems significantly in the coming years. Are you aware of any promising research?

Yes, you're not alone. We're all in this together. That's a good way to look at things. I feel the same way. Honestly, if I can stabilize a bit, and can leave the house with double protection, and not get setbacks at home all the time, I'll be fine. I won't be happy but I'll be fine.

I used Lazarus Naturals CBD but now I use Charlotte's Web, it's much better quality but it's expensive.

After I felt something break in my middle ear and all the other other damage I got, I couldn't talk much for over a year. Then, after acupuncture for a few months, I was able to again which has been godsend. I can play Xbox on mute that has subtitles so I can at least talk to my friends. My tolerance does change for certain sounds and it seems the more silence I get, the more I can handle. The high pitch stuff like I said I have to avoid completely.

I use the Peltor X5A. They kill my jaw and I have to sleep in them now which sucks. Sometimes I don't sleep much at all but unless it's a bad day, my pain usually calms down a little right before bed because I go to bed so late. From 11 pm-4 am it's completely quiet. I've gotten so used to being in pain that I can sleep through it unless it's a bad day. Yeah, let's just say my pain on bad days is more painful than almost anything. I've broken bones, tore muscles and ligaments, had teeth pulled with no numbing, had so many injuries and nothing has even come close. I would throw up for days, the ear pain would be so bad. I never heard of anybody getting it that bad that they were vomiting. I did stick a knife through my hand last year and laughed, got stung by a whole nest of yellow jackets and yawned. I honestly can't imagine anything being more painful than whatever I got. I would punch myself in the face nonstop for hours because it was so painful. So yeah, I got it really bad, because the lingering pain would just intensify and last the rest of the day or for weeks even.

And I'm the wrong person to ask about research. I was really hopeful and optimistic last year because there were so many drugs to potentially help. Now everything has pretty much crash and burned. We only have Dr. Shore's device and that won't help noxacusis. XEN1101 might help us but we won't know till people try it in two years. Hearing regenerative medicine all failed and there won't be a good treatment for noxacusis till at least next decade. I thought at least one would pass but we were all wrong. Maybe noxacusis will never get a cure or treatment. It's pretty scary. I try not to think about it but being in a room, never leaving, gets to you.

 

[xyz]

When I have my earmuffs on, I slide on the floor rather than walk, to avoid the booming. Must look pretty fun.

Moonwalk against the Occlusion Effect

Could be the title of a paper in a hyperacusis journal.

 

[stacey]

Hello @Brian Newman, I read your story. I was looking for something helpful after I'm having a major setback. I've exhausted every possible solution because there isn't any.

In this recent post you mentioned CBD? Did it at least take the pain off for a bit? I have severe head pain with every noise and although I'm hesitant on things like CBD and THC, I'm considering trying it in very tiny doses, but only if it can help me with the pain I feel in my ear and head.

 

[Brian Newman]

Hello @Brian Newman, I read your story. I was looking for something helpful after I'm having a major setback. I've exhausted every possible solution because there isn't any.

In this recent post you mentioned CBD? Did it at least take the pain off for a bit? I have severe head pain with every noise and although I'm hesitant on things like CBD and THC, I'm considering trying it in very tiny doses, but only if it can help me with the pain I feel in my ear and head.

Sorry about your setback Stacey. I've been awful lately too. It's no fun at all. I take Charlotte's Web Extra Strong CBD and low-dose Naltrexone, it takes the edge off my pain. Definitely safer to try than other drugs doctors give. CBD affects my tinnitus and it helps me sleep too. Naltrexone makes your body feel less pain in general. Worth a try.

 

[stacey]

Sorry about your setback Stacey. I've been awful lately too. It's no fun at all. I take Charlotte's Web Extra Strong CBD and low-dose Naltrexone, it takes the edge off my pain. Definitely safer to try than other drugs doctors give. CBD affects my tinnitus and it helps me sleep too. Naltrexone makes your body feel less pain in general. Worth a try.

Definitely worth a try. Thank you.

 

[TheFriendlyGhost]

Hi @Brian Newman,

I asked if it is possible to skip the hearing test, but according to the ENTs, it is necessary for me to perform a hearing test. How much do you think a hearing test could hurt me in this situation?

 

[yeezysqueezy]

Hey @TheFriendlyGhost. Don't ever feel pressured into doing anything you're not comfortable with. I've also learned that most ENTs are useless to us but you might luck out.

One thing you could consider doing is asking to only have the "basic" hearing test where they play tones and you click the button when you hear them. For me the highest they played was 20 dB I think. I would decline the test where they ask you to repeat the words. I wasn't even that bad back then but I had to repeatedly ask her to turn it down and she didn't want to and didn't take me seriously.

I would tell the audiologist ahead of time that you are EXTREMELY sensitive to sounds right now and they cause you physical pain. They talk to you through the little things in your ears and that might irritate your ears so I would ask to turn the volume down on their voice as much as possible.

 

[Brian Newman]

I asked if it is possible to skip the hearing test, but according to the ENTs, it is necessary for me to perform a hearing test. How much do you think a hearing test could hurt me in this situation?

@yeezysqueezy pretty much covered everything. Before I got really really bad, I told them sound causes me horrible pain, and to keep everything on the minimum volume. Most tests start low and work up till you hear it. One of my buddies said his audiologist started at high and went low, first time I heard of them doing that. The beeps are so quiet they probably wouldn't hurt my ears now because I hear -10 dB. It's when they're talking to you they usually have it too loud and the sound quality of the speech-in-noise test is awful and too loud.

It's fun knowing if you have damage that shows up but sometimes it doesn't. Even if it does, there's nothing you can do about it. It's up to you if you want to do it or not. It's usually fine if they're not a Jastreboff worshipping moron lol.

I won't do hearing tests ever again just because there's no point.

 

[TheFriendlyGhost]

Update after my ENT visit:

It went as expected.

This is what the ENT told me:

• My hearing test showed no hearing loss.
• There is no drug that can help with my pain.
• Everyday sounds are no more harmful to me than a normal person.
• Using hearing protection will only make my condition worse.
• I will be put on CBT treatment which according to the ENT has an 80-90% success rate.

My thoughts:

• That my hearing test showed no hearing loss was no surprise to me.
• I do not believe that there is no drug that can help with the pain. However, I'm probably not interested in it at the moment because it doesn't help the underlying problem and the side effects probably don't make it worth it.
• How can everyday sounds not be harmful to me when it is everyday sounds that have worsened my condition?
• How can hearing protection make my condition worse if silence is the only thing that helps me with the pain?
• I have no doubt that CBT treatment is successful for 80-90% of patients. However, I do not think that any of the patients who were helped by CBT suffered from severe noxacusis.

I would love to hear everyone's thoughts on this.

 

[SmallRonnie]

Update after my ENT visit:

It went as expected.

This is what the ENT told me:

• My hearing test showed no hearing loss.
• There is no drug that can help with my pain.
• Everyday sounds are no more harmful to me than a normal person.
• Using hearing protection will only make my condition worse.
• I will be put on CBT treatment which according to the ENT has an 80-90% success rate.

My thoughts:

• That my hearing test showed no hearing loss was no surprise to me.
• I do not believe that there is no drug that can help with the pain. However, I'm probably not interested in it at the moment because it doesn't help the underlying problem and the side effects probably don't make it worth it.
• How can everyday sounds not be harmful to me when it is everyday sounds that have worsened my condition?
• How can hearing protection make my condition worse if silence is the only thing that helps me with the pain?
• I have no doubt that CBT treatment is successful for 80-90% of patients. However, I do not think that any of the patients who were helped by CBT suffered from severe noxacusis.

I would love to hear everyone's thoughts on this.

I basically had the exact same experience with my ENT last week. He couldn't see any reason for the pain but it could be fluid stuck in my middle ear as my GP thought.

I have pain in my ear daily but not sure if it's because of noise. It's impossible to know for sure. I am past my very strong burning pain that I had for several months though and my ear fluttering is pretty much stopped after several months or a year.

I do think your ENT is right. How long have you had severe noxacusis? It took me about a year to get past the worst of it and I was very careful.

Once I stopped using earplugs everywhere and started living normally, the pain really did get better. A lot of it seriously is just psychosomatic.

I even went to a loud techno event at the weekend and wore foam earplugs and didn't have any worse pain or louder tinnitus after. I have high pitch, loud, tinnitus 24/7.

I spent months in terrible pain, burning pain, like an ice pick in my ear. No medication would help even in the slightest. Paracetamol, Ibuprofen, Codeine, Nortriptyline and Mirtazapine all provided zero relief for the pain I was going through at the time.

I spent many months wearing earmuffs all the time, then slowly stopped and reintroduced sounds and once I started doing that, I did get better.

I do still have daily pain but milder than before. I really don't know what to do about it but it doesn't bother me as much as the tinnitus currently and it's nowhere near as bad as the burning ice pick pain I had several months ago.

 

[Jupiterman]

This is what the ENT told me:

• Everyday sounds are no more harmful to me than a normal person.

• My thoughts:

• How can everyday sounds not be harmful to me when it is everyday sounds that have worsened my condition?

ENTs are literally reading this out of a textbook; they have no concept AT ALL of a damaged auditory system being easily susceptible to more damage. It's as silly to say that a 'healed' broken leg is just as robust as one that was never broken.

The only reason why ENT/audiologist/doctors get away with this buffoonery is because it's impossible to prove either way. It then suits their narrative to tell you it's all in your head if you get worse with further noise exposure. They can then just say you have an anxiety problem and just refer you on.

 

[Leila]

I would love to hear everyone's thoughts on this.

I was hit with a spell of pretty bad noxacusis about two years ago. Speaking, scratching my head, any artificially created sounds made something inside my ears "flutter" at first and if I didn't stop whatever I was doing immediately the pain would be unbearable.

When I when to my ENT for help it was obvious that he had no idea what I was talking about. He told me "Oh, that's fascinating, tell me more" but had no advice or assistance to offer whatsoever. It happened during COVID-19, so I decided to spare myself the unnecessary tests and just take self-isolation to the extreme. I didn't speak, I didn't answer the phone, I didn't listen to music or watch a movie for about three quarters of a year.

In the beginning I tried every once in a while because I couldn't accept that my life had turned into a nightmare like that but I was forced to learn rather quickly that the pain just wasn't worth it. I honestly didn't expect for this condition to improve but after a long, long time my ears became more tolerant to sounds again. I'm still far from perfect but I can live with and manage the sensitivity to sound that is left.

I've said this in previous post and I will say it again here, please listen to your own body! Your ENT means well but they have no idea what you are dealing with because, unless they've got / experienced noxacusis themselves, they have nothing to compare it to.

My personal experience is that if you force yourself to endure noises that cause you pain the sensitivity and the pain will get worse. And if you are willing to do so because somebody else thinks that's the way it ought to be done, your noxacusis is either less severe than you think or you have some kind of masochistic tendencies.

Noxacusis is torture and nobody who hasn't experienced this particular kind of torture will be able to understand it, so you will have to start listening to your body. I know it is hard because we have all been trained to consult our physicians and listen to their advice but there are conditions and conditions. I wouldn't argue about how to treat a broken bone but with a a condition as rare as ours you will have to become your own expert because just by living with it you know more about it than most ENTs.

I don't know if it will be possible for you to reduce outside influences the way it was possible for me (COVID-19 has been good for one thing, it seems) but give it your best shot. I know there are many people here who haven't been so fortunate to have their noxacusis improve but there are also people like me who are but we all seem to be dealing with the worst of this condition in a similar way.

It is your body and your pain threshold and if you have reached a point where you can't take it any more don't feel bad to put yourself first in order to get some relief.

All the best and fingers crossed that you'll be one of the lucky ones who will be able to go back to almost normal in time!

 

[Jupiterman]

I'm still far from perfect but I can live with and manage the sensitivity to sound that is left.

That's a lot of useful information you have given there and quite an ordeal you have gone through.

Can you say a bit more about your limitations now?

Can you listen to artificial sound (phone, TV, music)?

Are there things you still can't do?

 

[Leila]

Are there things you still can't do?

Hi @Jupiterman, here is a little more about what living with noxacusis means to me.

First of all, my life has become very quiet and I have stopped pushing my limits. I try to go about my day as normal as possible but the moment I notice that something - a noise, a voice, part of the environment - is about to set off my noxacusis I remove myself from the situation.

I am okay with most everyday noises but it is the weirdest things that my ears will react to. The timbre of a person's voice for example and, unfortunately, it doesn't even have to be a very loud voice.

The same goes for certain environments. Rooms with tiles or high ceilings or with few furniture are particularly bad. I figure that it must have something to do with the way the walls reflect soundwaves.

Artificially created sounds are still a challenge. I'm able to talk on the phone again, at least for a little while. Music is an option too, but so quietly that the sound of the cars going by my place is louder than my radio. TV is the hardest. I can watch a show for a some time but even with it on almost mute my ears start reacting almost immediately.

I'm not sure if it is the same for everyone but to me it feels as if with the onset of noxacusis some kind of filter has been turned off in my ears / brain. When the sound I'm reacting to is a very gentle sound stuffing tissue paper in my ears makes a difference as it seems to filter / break down whatever I'm reacting to. This way e.g., I can continue a conversation or stay a little longer in an "echoing" environment.

When environmental loudness is the issue, I either use foam ear plugs or my in-ear headphones to plug up my ears. When it's a person's voice it is a little more tricky but more often than not I just remove myself from the situation because the people who have made it a habit of talking to others in a "football trainer voice" won't stop doing so no matter how often you remind them to apply their indoor voice.

When I have a really bad day or days, I just lock myself away until my ears are able to handle sounds once again.

I know that many people on Tinnitus Talk use ear protectors that cut out all / most environmental sounds. That's something I have never been comfortable with outside my own home.

Because of my tinnitus, I've got WNGs that I use when the combination of tinnitus and noxacusis becomes unbearable but they are a challenge on their own. While using them, it doesn't trigger my noxacusis and helps with the tinnitus to a degree; it still is a noise on top of a noise when all I actually want is silence.

I use them because they give me relief from the tinnitus but whenever I wear them I'm literally deaf. My tinnitus noises are about 60 dB. The sound my WNG produces is a little lower than that, and while close to 120 dB prevents any outside noise from reaching my ears, it also puts me in a sound bubble and forces me to be hyperaware of my environment because I'm insusceptible to acoustic warnings.

It's become a weird life or a weird way of living and I'm often surprised to the things a person can adapt. I hope this little insight into my noxacusis dos and don'ts has been of help to you, @Jupiterman, I'm sorry I can't offer better advice or advice that is more than a band aid.

All the best!

 

[TheFriendlyGhost]

I basically had the exact same experience with my ENT last week. He couldn't see any reason for the pain but it could be fluid stuck in my middle ear as my GP thought.

I have pain in my ear daily but not sure if it's because of noise. It's impossible to know for sure. I am past my very strong burning pain that I had for several months though and my ear fluttering is pretty much stopped after several months or a year.

I do think your ENT is right. How long have you had severe noxacusis? It took me about a year to get past the worst of it and I was very careful.

Once I stopped using earplugs everywhere and started living normally, the pain really did get better. A lot of it seriously is just psychosomatic.

I even went to a loud techno event at the weekend and wore foam earplugs and didn't have any worse pain or louder tinnitus after. I have high pitch, loud, tinnitus 24/7.

I spent months in terrible pain, burning pain, like an ice pick in my ear. No medication would help even in the slightest. Paracetamol, Ibuprofen, Codeine, Nortriptyline and Mirtazapine all provided zero relief for the pain I was going through at the time.

I spent many months wearing earmuffs all the time, then slowly stopped and reintroduced sounds and once I started doing that, I did get better.

I do still have daily pain but milder than before. I really don't know what to do about it but it doesn't bother me as much as the tinnitus currently and it's nowhere near as bad as the burning ice pick pain I had several months ago.

I am glad to hear that your condition has improved.

Well, I don't know about your situation but I'm sure that my pain is caused by noise because I can feel the stabbing pain in my ear as I hear noise, and then there's a delayed burning pain.

I've had severe noxacusis since January.

I tried to live normally in the beginning, but I realized it was simply not possible. After going shopping with earplugs in, I just wanted to lie in bed the rest of the day because of the pain. After my visit to the ENT yesterday with a 15-minute car ride in double protection, I got a lot of pain and I'm still in a lot of pain, even though it is a little better now. I just can't see how I will be able to live normally at this point.

 

[TheFriendlyGhost]

ENTs are literally reading this out of a textbook; they have no concept AT ALL of a damaged auditory system being easily susceptible to more damage. It's as silly to say that a 'healed' broken leg is just as robust as one that was never broken.

The only reason why ENT/audiologist/doctors get away with this buffoonery is because it's impossible to prove either way. It then suits their narrative to tell you it's all in your head if you get worse with further noise exposure. They can then just say you have an anxiety problem and just refer you on.

Could not say it better myself. We know far too little about this condition.

 

[TheFriendlyGhost]

I was hit with a spell of pretty bad noxacusis about two years ago. Speaking, scratching my head, any artificially created sounds made something inside my ears "flutter" at first and if I didn't stop whatever I was doing immediately the pain would be unbearable.

When I when to my ENT for help it was obvious that he had no idea what I was talking about. He told me "Oh, that's fascinating, tell me more" but had no advice or assistance to offer whatsoever. It happened during COVID-19, so I decided to spare myself the unnecessary tests and just take self-isolation to the extreme. I didn't speak, I didn't answer the phone, I didn't listen to music or watch a movie for about three quarters of a year.

In the beginning I tried every once in a while because I couldn't accept that my life had turned into a nightmare like that but I was forced to learn rather quickly that the pain just wasn't worth it. I honestly didn't expect for this condition to improve but after a long, long time my ears became more tolerant to sounds again. I'm still far from perfect but I can live with and manage the sensitivity to sound that is left.

I've said this in previous post and I will say it again here, please listen to your own body! Your ENT means well but they have no idea what you are dealing with because, unless they've got / experienced noxacusis themselves, they have nothing to compare it to.

My personal experience is that if you force yourself to endure noises that cause you pain the sensitivity and the pain will get worse. And if you are willing to do so because somebody else thinks that's the way it ought to be done, your noxacusis is either less severe than you think or you have some kind of masochistic tendencies.

Noxacusis is torture and nobody who hasn't experienced this particular kind of torture will be able to understand it, so you will have to start listening to your body. I know it is hard because we have all been trained to consult our physicians and listen to their advice but there are conditions and conditions. I wouldn't argue about how to treat a broken bone but with a a condition as rare as ours you will have to become your own expert because just by living with it you know more about it than most ENTs.

I don't know if it will be possible for you to reduce outside influences the way it was possible for me (COVID-19 has been good for one thing, it seems) but give it your best shot. I know there are many people here who haven't been so fortunate to have their noxacusis improve but there are also people like me who are but we all seem to be dealing with the worst of this condition in a similar way.

It is your body and your pain threshold and if you have reached a point where you can't take it any more don't feel bad to put yourself first in order to get some relief.

All the best and fingers crossed that you'll be one of the lucky ones who will be able to go back to almost normal in time!

I am glad to hear that your condition has improved. That gives me some hope.

I will take your advice and listen to my body.

 

[SmallRonnie]

I am glad to hear that your condition has improved.

Well, I don't know about your situation but I'm sure that my pain is caused by noise because I can feel the stabbing pain in my ear as I hear noise, and then there's a delayed burning pain.

I've had severe noxacusis since January.

I tried to live normally in the beginning, but I realized it was simply not possible. After going shopping with earplugs in, I just wanted to lie in bed the rest of the day because of the pain. After my visit to the ENT yesterday with a 15-minute car ride in double protection, I got a lot of pain and I'm still in a lot of pain, even though it is a little better now. I just can't see how I will be able to live normally at this point.

There is a decent chance you will improve. A lot of people have been just as bad as you and recovered about 90%. It takes at least 8-12 months usually though or maybe sometimes more. Depends on the severity of your case probably.

 

[TheFriendlyGhost]

How many of you with moderate/severe noxacusis have TTTS? I have noticed that when my TTTS is worse, I experience more of one type of pain (I have 3-4 different types of pain). The pain could simply be because I was exposed to too loud noise (in the sense that TTTS has nothing to do with the pain) or because the TTTS creates pain, or both? Just a thought.

 

[Brian Newman]

Update after my ENT visit:

It went as expected.

This is what the ENT told me:

• My hearing test showed no hearing loss.
• There is no drug that can help with my pain.
• Everyday sounds are no more harmful to me than a normal person.
• Using hearing protection will only make my condition worse.
• I will be put on CBT treatment which according to the ENT has an 80-90% success rate.

My thoughts:

• That my hearing test showed no hearing loss was no surprise to me.
• I do not believe that there is no drug that can help with the pain. However, I'm probably not interested in it at the moment because it doesn't help the underlying problem and the side effects probably don't make it worth it.
• How can everyday sounds not be harmful to me when it is everyday sounds that have worsened my condition?
• How can hearing protection make my condition worse if silence is the only thing that helps me with the pain?
• I have no doubt that CBT treatment is successful for 80-90% of patients. However, I do not think that any of the patients who were helped by CBT suffered from severe noxacusis.

I would love to hear everyone's thoughts on this.

You have delayed pain, right? Yeah, you seem like you got a decent concept of it. Don't listen to anybody who tells you to push through sound that makes you worse or causes pain. I kept pushing through the TV and other sounds and it ruined me. I've been dealing with tinnitus and hyperacusis for 8 years now and anybody on this planet who says our ears are not more susceptible to damage, is full of complete garbage. Like somebody else said on here, when you break your leg, it's never going to be 100% again. Any other organ will never be 100% again, but doctors tell you that your ears will be OK. Ummm, no, hahaha. If a doctor tells you sound can't make it worse or our ears can't get worse from sound, make sure it's your last visit. Crazy that they still tell people this.

 

[momus]

I saw this on Wikipedia. Whether it's true or not, I don't know.

"Pink noise can also be used to treat hyperacusis. By listening to broadband noise at soft levels for a disciplined period of time each day, some patients can rebuild (i.e., re-establish) their tolerances to sound."​

I feel for your suffering. My experience w/ doctors regarding my tinnitus is that none of them had a clue about what I was going through. Just a total disconnect to the problem for some reason. The one exception was a doctor's aide who temporarily experienced tinnitus. She knew first hand how bad it could be, and mentioned that she could not go to restaurants w/ open kitchens because the clattering of plates caused her pain.

In my mind, we have to figure out things on our own, and look to other tinnitus sufferers who may have some good info for us. This forum is a great place to go when we're having trouble just trying to get through another day. But, and this is just my personal opinion, it can also seem to make things worse because it draws attention to our tinnitus. Tinnitus self-help groups had the same effect to me, so I had to stop going.

Pink noise at the right frequencies usually helps me, but not always, and staying busy and getting off this laptop does too. Fortunately, mine isn't aggravated by normal outside noise (yet), so being out and about is an escape from the ringing. Winters are tough. When it's warm, I am very happy to be outside. I wish I had better advice for you. It just is what it is in my case, causation has proven to be a dead end w/ mine, so I focus on whatever workarounds might help.

 

[eagerUser]

As others have said, DO listen to your own body.

I believe my condition has gotten worse from sitting in silence and focusing on my problem for the last couple of months.

I was able to do everything without protection with some discomfort (pain), like shopping, walking, etc, but now I am afraid (phonophobia) of all the things I used to do and my pain threshold is extremely lower.

I was even able to talk on the phone with a little bit of discomfort if the talk was long but now I only talk while on speaker mode because I can't handle it like before!

I can't think of anything except silence and stress (panic) that turned my mild condition to moderate/severe!

Again, listen to your own body. Silence may work the best for you, or may be your enemy.

I hope to see you all in the success stories.

 

[TheFriendlyGhost]

You have delayed pain, right? Yeah, you seem like you got a decent concept of it. Don't listen to anybody who tells you to push through sound that makes you worse or causes pain. I kept pushing through the TV and other sounds and it ruined me. I've been dealing with tinnitus and hyperacusis for 8 years now and anybody on this planet who says our ears are not more susceptible to damage, is full of complete garbage. Like somebody else said on here, when you break your leg, it's never going to be 100% again. Any other organ will never be 100% again, but doctors tell you that your ears will be OK. Ummm, no, hahaha. If a doctor tells you sound can't make it worse or our ears can't get worse from sound, make sure it's your last visit. Crazy that they still tell people this.

Yes. I have delayed pain. I agree with everything you said. I think it's impossible for a normal person to imagine what it's like to live with this condition. It really is hell on earth.

I saw this on Wikipedia. Whether it's true or not, I don't know.

"Pink noise can also be used to treat hyperacusis. By listening to broadband noise at soft levels for a disciplined period of time each day, some patients can rebuild (i.e., re-establish) their tolerances to sound."​

I feel for your suffering. My experience w/ doctors regarding my tinnitus is that none of them had a clue about what I was going through. Just a total disconnect to the problem for some reason. The one exception was a doctor's aide who temporarily experienced tinnitus. She knew first hand how bad it could be, and mentioned that she could not go to restaurants w/ open kitchens because the clattering of plates caused her pain.

In my mind, we have to figure out things on our own, and look to other tinnitus sufferers who may have some good info for us. This forum is a great place to go when we're having trouble just trying to get through another day. But, and this is just my personal opinion, it can also seem to make things worse because it draws attention to our tinnitus. Tinnitus self-help groups had the same effect to me, so I had to stop going.

Pink noise at the right frequencies usually helps me, but not always, and staying busy and getting off this laptop does too. Fortunately, mine isn't aggravated by normal outside noise (yet), so being out and about is an escape from the ringing. Winters are tough. When it's warm, I am very happy to be outside. I wish I had better advice for you. It just is what it is in my case, causation has proven to be a dead end w/ mine, so I focus on whatever workarounds might help.

I haven't ruled out that sound therapy can help, but when you even feel pain in silence, I doubt it helps. I'm afraid it will even make it worse.

My tinnitus is very annoying, but it cannot be compared to my noxacusis. If I only had the level of tinnitus that I have now and no hyperacusis, I could have lived a reasonably normal life.

As others have said, DO listen to your own body.

I believe my condition has gotten worse from sitting in silence and focusing on my problem for the last couple of months.

I was able to do everything without protection with some discomfort (pain), like shopping, walking, etc, but now I am afraid (phonophobia) of all the things I used to do and my pain threshold is extremely lower.

I was even able to talk on the phone with a little bit of discomfort if the talk was long but now I only talk while on speaker mode because I can't handle it like before!

I can't think of anything except silence and stress (panic) that turned my mild condition to moderate/severe!

Again, listen to your own body. Silence may work the best for you, or may be your enemy.

I hope to see you all in the success stories.

In the beginning I tried to live as usual (shopping, walking, etc). But in the end I couldn't take the pain anymore. My pain doesn't go away quickly, it takes several days for the pain to subside provided I can avoid reasonably loud noises.

 

[eagerUser]

In the beginning I tried to live as usual (shopping, walking, etc). But in the end I couldn't take the pain anymore. My pain doesn't go away quickly, it takes several days for the pain to subside provided I can avoid reasonably loud noises.

I know what you said, some noises cause lingering pain in my case like screaming or cutlery noise. But, I was doing almost ok in quiet shopping centers and walking in quiet parks. I didn't have problem with loudness only with the frequency of the noise. Interestingly, some loud noises that cause discomfort to healthy ears doesn't butter me at all but some quiet high pitched noise is the killer.

But in the last couple of months I was under a ton of pressure physically and mentally which I Believe along with silence therapy made everything worse for me.

I have never been to loud environments in my whole life till now and still do avoid them but some silly mistakes was enough for me to end up here.