People with Dysacusis, Distortions or Loudness Hyperacusis — Describe Your Symptoms!

[Matchbox]

My initial onset is a mystery but I came to the conclusion that it was the drug Fluconazole. Huge bummer.

Must've had a pretty high dose, I've never heard of an anti-fungal causing this shit.

 

[DaysToWaste]

@__nico__, I also struggle with the distortions which are different than tinnitus (I also have tinnitus though). TV and music sound like a broken speaker to me but face to face conversations sound very normal. Like you, the volume or proximity does not make any difference and I have no sound sensitivity.

I would say give it time, at least 1 year. I know it really sucks since I am also going through this but we have to stay strong. There is hope it will go away.

 

[__nico__]

@__nico__, I also struggle with the distortions which are different than tinnitus (I also have tinnitus though). TV and music sound like a broken speaker to me but face to face conversations sound very normal. Like you, the volume or proximity does not make any difference and I have no sound sensitivity.

I would say give it time, at least 1 year. I know it really sucks since I am also going through this but we have to stay strong. There is hope it will go away.

How long have you had distortions?

 

[DaysToWaste]

@__nico__ for 1 year but to be honest I did not give my ears a break because of my job in music industry.

Doctors I went to said it must be ETD and to continue my work as normal and sadly I did. I just took a break from work (this January) and decided to postpone everything for 1 year see how things change.

I hope for improvements.

I also have reactive tinnitus when hearing water and piano. It's extremely difficult getting to a point where as a musician you cannot even listen to anything because it's so distorted.

If I am not wrong, your distortions started way more recently so I think you have better chances than me for a faster recovery. My advice is do not listen to headphones AT ALL but I believe you already know that.

I will however mention I slowed down with the music exposure even if all doctors said it has nothing to do with it. Because of that at around 6th month mark of my distortions started to sound a bit clearer.

I'm with you Nico. Let's give it time and I hope in a few months' we'll notice changes for the better. But seriously avoid anything loud. We have to help our ears to recover. We keep in touch and if I can help with anything do let me know.

 

[__nico__]

@__nico__ for 1 year but to be honest I did not give my ears a break because of my job in music industry.

Doctors I went to said it must be ETD and to continue my work as normal and sadly I did. I just took a break from work (this January) and decided to postpone everything for 1 year see how things change.

I hope for improvements.

I also have reactive tinnitus when hearing water and piano. It's extremely difficult getting to a point where as a musician you cannot even listen to anything because it's so distorted.

If I am not wrong, your distortions started way more recently so I think you have better chances than me for a faster recovery. My advice is do not listen to headphones AT ALL but I believe you already know that.

I will however mention I slowed down with the music exposure even if all doctors said it has nothing to do with it. Because of that at around 6th month mark of my distortions started to sound a bit clearer.

I'm with you Nico. Let's give it time and I hope in a few months' we'll notice changes for the better. But seriously avoid anything loud. We have to help our ears to recover. We keep in touch and if I can help with anything do let me know.

My distortions are for similar reasons. I've had severe and reactive tinnitus for a while before the distortions set in. I never gave my ears a break until it was too late, and the damage is still setting in. I can only hope medication helps this.

 

[Ava Lugo]

@__nico__ for 1 year but to be honest I did not give my ears a break because of my job in music industry.

Doctors I went to said it must be ETD and to continue my work as normal and sadly I did. I just took a break from work (this January) and decided to postpone everything for 1 year see how things change.

I hope for improvements.

I also have reactive tinnitus when hearing water and piano. It's extremely difficult getting to a point where as a musician you cannot even listen to anything because it's so distorted.

If I am not wrong, your distortions started way more recently so I think you have better chances than me for a faster recovery. My advice is do not listen to headphones AT ALL but I believe you already know that.

I will however mention I slowed down with the music exposure even if all doctors said it has nothing to do with it. Because of that at around 6th month mark of my distortions started to sound a bit clearer.

I'm with you Nico. Let's give it time and I hope in a few months' we'll notice changes for the better. But seriously avoid anything loud. We have to help our ears to recover. We keep in touch and if I can help with anything do let me know.

Those who have had reactive tinnitus and distortions for a year, do we not have any chance of getting better?

I'll probably try Keppra which I read can help with this but I have had this for over a year, so I hope I too have a chance for improvement. Mine started after a cold a year ago.

Do you still struggle with reactive tinnitus after a year? I can't understand why after a year I haven't improved It's not from noise exposure.

 

[__nico__]

Those who have had reactive tinnitus and distortions for a year, do we not have any chance of getting better?

I'll probably try Keppra which I read can help with this but I have had this for over a year, so I hope I too have a chance for improvement. Mine started after a cold a year ago.

Do you still struggle with reactive tinnitus after a year? I can't understand why after a year I haven't improved It's not from noise exposure.

Interesting to note that my reactive tinnitus has pretty much faded. So I just have sound distortions. However I started to get warning signs of noxacusis setting in, so...

 

[DaysToWaste]

@__nico__ Ears just take a looong time to heal. I will give my hearing a break before trying any medicine. Just make sure whatever you will get doesn't have high chances of side effects. I talked to a guy with reactive tinnitus and distortions and he said in a year things got back 100% to normal for him. It was caused by the same reason, noise exposure.

 

[DaysToWaste]

@Ava Lugo, has your symptoms changed even slightly over time?

Yes, besides the broken speaker effect I still struggle with reactive tinnitus and have permanent tinnitus in left ear.

I feel really sorry you have to deal with this.

I am 1 year into it and I still have hope it will get better.

I never tried Keppra. I just read that it helped some. If I see no improvements, I might also try it.

We have to try what we can and have patience. Don't lose hope.

 

[Ava Lugo]

@Ava Lugo, has your symptoms changed even slightly over time?

Yes, besides the broken speaker effect I still struggle with reactive tinnitus and have permanent tinnitus in left ear.

I feel really sorry you have to deal with this.

I am 1 year into it and I still have hope it will get better.

I never tried Keppra. I just read that it helped some. If I see no improvements, I might also try it.

We have to try what we can and have patience. Don't lose hope.

I wonder why some people's reactive tinnitus goes away after 6 months to a year and why some still have it after a year. I'm also still trying to have hope despite how hard it is. How do you cope with this? What are things you do to entertain yourself when music sounds distorted? And I read about people wearing earplugs with reactive tinnitus and I can't benefit from earplugs cause I have closed ear canal on one side and then the other ear is 85 percent deaf so yeah. I do have some hearing on the closed ear canal side cause the inner ear works well enough but the ear canal is closed so that's why there's still some hearing loss there. It's hard to explain. I have a mixture of bone conductive and Sensinourial hearing loss. So I just listen to tinnitus therapy app which doesn't mask it but distracts a little from the reactivity or sometimes I turn my hearing aid off for a bit when in noisy settings. Do earplugs make it where you don't notice the reactivity at all? Or do you still hear reactive T with the plugs in it just makes it a little quieter? I want to be able to hear the world like my friends and the way it's meant to be heard not hearing things through a weird messed up twilight zone veil.

 

[vermillion]

I wonder why some people's reactive tinnitus goes away after 6 months to a year and why some still have it after a year.

I have been wondering the same. Personally I have 0 hopes of healing. Distortions for more than 2 years, which now have gotten much much worse along with sound sensitivity and intermittent ear pain. The latter two are my big problems atm. I deal better with tinnitus but the ear spasms and discomfort is another level of limitation.

 

[vermillion]

Must've had a pretty high dose, I've never heard of an anti-fungal causing this shit.

150mg / week for two months.

 

[MindOverMatter]

Those who have had reactive tinnitus and distortions for a year, do we not have any chance of getting better?

Of course there is both chance and hope of getting better. As mentioned both in this thread, and on the forum in general, ears "heal" very slowly...

Normally you can not measure progression from week to week once you've reached the chronic stages (i.e. 6 months plus). At least when speaking about noise induced tinnitus or similar - with or without hearing loss.

Progression is not linear for most, and I'd say progression may be measured/felt month by month for some individuals, but can be even years. Even after 1-3 years, you can get better. There is no answer as this is so individual.

The ONLY thing that I am certain of, personally, is that you won't be in a state to be able to get/feel better if you're in a constant "fight and flight mode" - riddled by anger, anxiety and depression. These are my personal views, based upon my own experience - others might have different views and experiences.

 

[DaysToWaste]

@Ava Lugo I don't think I can cope with it better than anyone else here. I have moments when I think why life became so difficult for me while nobody around me has to deal with this. But I think I can pull through in a world which is hard to live in as long as it's not a world I don't want to live in. I always remind myself to find strength in the good things that I still have in life.

To distract myself, honestly I do not listen to music, I try to avoid it or else I would probably just cry. It sounds too shrilled. I do misssss it so much. I watch movies with subtitles, read books / articles, take walks, text friends. Just anything that will make me focus on something else.

The thing with earplugs is that my permanent tinnitus is 9 on a scale of 1 to 10. If I use any earplugs, it will make it worse, way louder. So I just live with the reactive part. I can't do anything about it. I tried things like pink noise but it seems to make it worse.

For sure keep using the app if it distracts you. Knowing all you go through I truly wish I could do more than offer encouraging words.

Just know you are not alone. And if not hope, then keep the strength.

 

[twa]

@__nico__ Ears just take a looong time to heal. I will give my hearing a break before trying any medicine. Just make sure whatever you will get doesn't have high chances of side effects. I talked to a guy with reactive tinnitus and distortions and he said in a year things got back 100% to normal for him. It was caused by the same reason, noise exposure.

Sorry to interrupt, did he have tinnitus and hyperacusis?

 

[DaysToWaste]

Sorry to interrupt, did he have tinnitus and hyperacusis?

Nothing to say sorry about. Yes and reactive tinnitus too. He had a lot of pain from the hyperacusis and mentioned the bus sound was excruciating. He made a complete recovery and is well now. His case was noise induced.

 

[__nico__]

Sorry to interrupt, did he have tinnitus and hyperacusis?

I think she is talking about Jason C, so yes.

 

[__nico__]

I have closed ear canal on one side

Could surgery fix this?

 

[twa]

Nothing to say sorry about. Yes and reactive tinnitus too. He had a lot of pain from the hyperacusis and mentioned the bus sound was excruciating. He made a complete recovery and is well now. His case was noise induced.

Thank you ~ I've talked to Jason C several times. His story is inspirational. So is Jiffyman's story, very encouraging. He didn't have distortions, just tinnitus and hyperacusis that I know of.

 

[DaysToWaste]

@twa I agree. Things can get better, we just have to give it time.

 

[Ava Lugo]

@Ava Lugo I don't think I can cope with it better than anyone else here. I have moments when I think why life became so difficult for me while nobody around me has to deal with this. But I think I can pull through in a world which is hard to live in as long as it's not a world I don't want to live in. I always remind myself to find strength in the good things that I still have in life.

To distract myself, honestly I do not listen to music, I try to avoid it or else I would probably just cry. It sounds too shrilled. I do misssss it so much. I watch movies with subtitles, read books / articles, take walks, text friends. Just anything that will make me focus on something else.

The thing with earplugs is that my permanent tinnitus is 9 on a scale of 1 to 10. If I use any earplugs, it will make it worse, way louder. So I just live with the reactive part. I can't do anything about it. I tried things like pink noise but it seems to make it worse.

For sure keep using the app if it distracts you. Knowing all you go through I truly wish I could do more than offer encouraging words.

Just know you are not alone. And if not hope, then keep the strength.

I'm guessing you have reactive tinnitus every day pretty much? I know some people's reactive tinnitus will come and go but mine is every day so yeah no break from it.

I noticed drinking a lot of alcohol makes music sound better at the time because alcohol impairs perception so when I'm tipsy I don't notice the distortions hardly at all and it's almost like how things were before this started for me.

 

[DaysToWaste]

@Ava Lugo Yes! My reactive tinnitus is present every single day as well. Nothing helps me at the moment.

 

[Pierce Wolf]

Nothing to say sorry about. Yes and reactive tinnitus too. He had a lot of pain from the hyperacusis and mentioned the bus sound was excruciating. He made a complete recovery and is well now. His case was noise induced.

Noise induced in what way? Was it cumulative or a 1 off exposure? Mine is 1 off and I've only had it for almost 2 months and my distortions only started after 2 weeks in and after 4 weeks my tinnitus has mostly subsided but the distortions are very noticeable.

 

[DaysToWaste]

@Pierce Wolf He got it after a concert so it's similar to your situation. And it's actually a good thing because cumulative (like me) takes much longer to get better from what I know. He was really committed to get back to normal and avoided anything loud for 1 year and even now he is careful. He also stopped using headphones. Be kind to your ears in the healing process and I am pretty sure you will also make a full recovery.

 

[Pierce Wolf]

@Pierce Wolf He got it after a concert so it's similar to your situation. And it's actually a good thing because cumulative (like me) takes much longer to get better from what I know. He was really committed to get back to normal and avoided anything loud for 1 year and even now he is careful. He also stopped using headphones. Be kind to your ears in the healing process and I am pretty sure you will also make a full recovery.

Thanks for responding so quickly!

I am now at a constant inner debate all the time weather to wear protection constantly or around certain things and if so what. Like yesterday I went to the beach for the first time with distortions and oh my lord the waves were unbearable I had to plug up. I do hope things will get better though.

Hearing stuff like this helps my sanity greatly.

 

[DaysToWaste]

@Pierce Wolf You might get different opinions on whether earplugs are a good idea or not. I believe balance is key.

I would suggest do not overprotect your ears. Just avoid things that seem 'too much to take' for your ears if that makes sense. Plug up only when necessary. If waves makes it unbearable for your ear then absolutely that's a YES. Avoid loud music too.

It will take a while, probably 1 year for your ear to get back to normal fully. Ears heal very slow so patience goes a long way.

Best wishes Pierce!

 

[Matchbox]

I noticed Cyclobenzaprine is similar in not "caring" about the distortions so much, but they are definitely still there.

Benzos at least in the beginning for me absolutely undoubtedly helped the distortions and new tones dissipate. Not so much when they've stuck around for a few months (I doubt it's entirely tolerance, sleeping benzos absolute still make me sleepy at half to normal doses).

 

[Brian Newman]

I am having the same problems. That video is describing what is going on with me. I already have tinnitus from shooting guns. I started getting distortions after lifting heavy weights a month ago.

I suspect it's a perilymphatic fistula. I just have headaches, not much vertigo unless I get off an elevator. The distortions slowly get better if I hide from noise and don't exert myself. I have not worked out in 5 days.

The distortions also come back if somebody at work drops something or rings a loud bell. Very odd. I'm starting to go crazy!

Anybody have any ideas what's going on?

I saw an audiologist Friday. He said I have no hearing loss but I do have hypercausis?

 

[vermillion]

I am having the same problems. That video is describing what is going on with me. I already have tinnitus from shooting guns. I started getting distortions after lifting heavy weights a month ago.

I suspect it's a perilymphatic fistula. I just have headaches, not much vertigo unless I get off an elevator. The distortions slowly get better if I hide from noise and don't exert myself. I have not worked out in 5 days.

The distortions also come back if somebody at work drops something or rings a loud bell. Very odd. I'm starting to go crazy!

Anybody have any ideas what's going on?

I saw an audiologist Friday. He said I have no hearing loss but I do have hypercausis?

Did you go to the doctor for the perilymph fistula in the end?

Any news?

 

[Brian Newman]

Did you go to the doctor for the perilymph fistula in the end?

Any news?

Yeah I just got my CT scan today, so hopefully I'm going to find out soon, the ENT prescribed me Prednisone of course, I haven't started it yet. I'm afraid. I tried it 4 years ago and was so anxious I had to stop it. The stuff is really rough. I'm still debating whether I should try it or not.