Massive Setback/Worsening

[Sen]

For the past 6 months things had been going relatively well with my hyperacusis and/or misophonia. Over the past year I've been using 24/7 pink noise, increasing the volume when I felt comfortable enough to do so. I had also been using a type of music protocol when I could tolerate it. For some reason music is more difficult for me than other types of sounds (the dynamic range, maybe?), so this part of my treatment was a struggle, but I persisted. Sometimes afterward my ears would be in pain or I'd feel dizzy and I'd have to take some days off until this resolved because music at any volume became uncomfortable to listen to.

Anyway, last week I got a type of oral cleaning device called a Waterpik, and used it twice a day over the course of 3 days. For anyone who has used one before, you know that it is very loud. I made sure to use hearing protection while I used it to protect myself from the motor sound, but this only kind of worked, as the motor sound vibrates through the cord into your mouth as you use it. After each use I noted that my ears felt weird and tired, but nothing significant, so I kept going.

After the 3rd day it became clear I was in a setback of sorts. My tinnitus was screechier than usual, and sounds felt louder and more piercing than usual. I stopped using the Waterpik, and told myself to relax and that it would get better. Thankfully I did not require any fillings from the dentist during this time, I was very worried about that making things worse on top of my setback.

Then yesterday I was sitting at my pc using a chat site called 'Omegle'. I had users microphones muted because typically they're of an unpredictable quality. For reasons I don't really I understand, I chose to unmute a user before adjusting the browser volume. The sound was horrific. It was somehow so overblown that the volume was louder than anything I had ever heard come out of my speakers before. It was crackled, distorted and shrieking. I felt immediate pain.

I managed to mute it again within 1-2 seconds, but by then it was too late. All day yesterday and into today my tinnitus is screeching off the hook, it is now swirling around inside my brain as opposed to just being in my ears. My left ear is aching like a sore muscle. My right ear is having intermittent sharp pain. The entire right side of my face is tensing up again and feels like someone is pushing it around with their hand, and I'm getting all kinds of weird aches and sharp pains on my face and around my ears. The feeling of pressure in my head has increased significantly, and I've had a severe headache for nearly 24 hours now. My sound sensitivity has reverted to 2013 levels. It once again hurts my ears to type on a keyboard, and many other sounds I had no issue with anymore are hurting me once again.

I am nearly 5 years in now and it seems there is no getting better. I don't suspect this will be a permanent change, but the need to deal with this over and over again, requiring months to see any improvement, is very demoralizing. The fact that this time it was caused by my own stupidity and negligence hits even harder.

My hands are in quite a lot of pain from typing this, so I will avoid using them for the next few hours, lest I get a hand pain 'setback' as well.

 

[Phil-O]

For the past 6 months things had been going relatively well with my hyperacusis and/or misophonia. Over the past year I've been using 24/7 pink noise, increasing the volume when I felt comfortable enough to do so. I had also been using a type of music protocol when I could tolerate it. For some reason music is more difficult for me than other types of sounds (the dynamic range, maybe?), so this part of my treatment was a struggle, but I persisted. Sometimes afterward my ears would be in pain or I'd feel dizzy and I'd have to take some days off until this resolved because music at any volume became uncomfortable to listen to.

Anyway, last week I got a type of oral cleaning device called a Waterpik, and used it twice a day over the course of 3 days. For anyone who has used one before, you know that it is very loud. I made sure to use hearing protection while I used it to protect myself from the motor sound, but this only kind of worked, as the motor sound vibrates through the cord into your mouth as you use it. After each use I noted that my ears felt weird and tired, but nothing significant, so I kept going.

After the 3rd day it became clear I was in a setback of sorts. My tinnitus was screechier than usual, and sounds felt louder and more piercing than usual. I stopped using the Waterpik, and told myself to relax and that it would get better. Thankfully I did not require any fillings from the dentist during this time, I was very worried about that making things worse on top of my setback.

Then yesterday I was sitting at my pc using a chat site called 'Omegle'. I had users microphones muted because typically they're of an unpredictable quality. For reasons I don't really I understand, I chose to unmute a user before adjusting the browser volume. The sound was horrific. It was somehow so overblown that the volume was louder than anything I had ever heard come out of my speakers before. It was crackled, distorted and shrieking. I felt immediate pain.

I managed to mute it again within 1-2 seconds, but by then it was too late. All day yesterday and into today my tinnitus is screeching off the hook, it is now swirling around inside my brain as opposed to just being in my ears. My left ear is aching like a sore muscle. My right ear is having intermittent sharp pain. The entire right side of my face is tensing up again and feels like someone is pushing it around with their hand, and I'm getting all kinds of weird aches and sharp pains on my face and around my ears. The feeling of pressure in my head has increased significantly, and I've had a severe headache for nearly 24 hours now. My sound sensitivity has reverted to 2013 levels. It once again hurts my ears to type on a keyboard, and many other sounds I had no issue with anymore are hurting me once again.

I am nearly 5 years in now and it seems there is no getting better. I don't suspect this will be a permanent change, but the need to deal with this over and over again, requiring months to see any improvement, is very demoralizing. The fact that this time it was caused by my own stupidity and negligence hits even harder.

My hands are in quite a lot of pain from typing this, so I will avoid using them for the next few hours, lest I get a hand pain 'setback' as well.

Hi @Sen
Had a bit of a spike the other day. Own fault setting up a PA system, forgot to set the gain/ volume control to off! Instant earache, usually so careful, have ear defenders everywhere. Fortunately settled down after a few days, so you should be ok in a short while. Best wishes Phil

 

[Juan]

Waterpik is an electric toothbrush? If it is, you cannot protect your hearing from bone conduction, and actually wearing earplugs or earmuffs (specially earplugs) will make the sound reverberate more. It is like you are brushing your hair or combing it with earplugs on. If you do that, just to get an idea, you will see how the sound reverberates inside your head, when you are wearing earplugs.

Do you have hearing loss? Have you got your jaw, neck and back checked? You are describing a pressure feeling that seems to come from noise, from some sort of inflammation, but this has an impact on how tense you feel, and the tension may irradiate too to the neck, shoulders etc.. it's a bit of a catch-22 situation.

 

[Sen]

Waterpik is an electric toothbrush?

It's an electric water flosser.

http://i.imgur.com/lmSCR9l.png

And yes, I understand how bone conduction works. The noise originates from the base, not from the piece that goes into your mouth, but it vibrates through the cord and clacks against your teeth.

I do not have "clinically significant" hearing loss. I've gone to doctors about my condition. They check me for what they believe is the problem. I don't get to choose what they check for.

 

[Michael Leigh]

It's an electric water flosser.

http://i.imgur.com/lmSCR9l.png
And yes, I understand how bone conduction works. The noise originates from the base, not from the piece that goes into your mouth. I didn't expect it to vibrate so intensely through the cord.
I do not have "clinically significant" hearing loss. I've gone to doctors about my condition. They check me for what they believe is the problem. I don't get to choose what they check for.

@Sen I am sorry that the Waterpik is too loud for you. It is noisy but doesn't bother me at all and I once had very severe hyperacusis. The Waterpik is very good and much better than using ordinary dental floss. I hope you will be able to continue using it.
Michael

 

[Sen]

I once had very severe hyperacusis.

Based on what you've described, it was significantly milder than mine.

I hope you will be able to continue using it.

I won't be able to. What an absolute waste of money.

 

[Michael Leigh]

Based on what you've described, it was significantly milder than mine.
I won't be able to. What an absolute waste of money.

My Hyperacusis was so severe I had to ask people to lower their voice when in conversation as my hurt so much. I had to wear earplugs when out on the street as my ears were in pain from outside noise. The hyperacusis was cured in two years with TRT and wearing white noise generators for 10hrs a day. It has remained that way and hasn't returned.

 

[Sen]

@Michael Leigh , based on what you've described, you had significantly fewer and more mild symptoms than I do. You listened to white/pink noise for much less time than I have, and you did not do music therapy, which I have been doing.

 

[Michael Leigh]

@Sen My tinnitus and hypercusis were excruciating believe me. This was 20 years ago. I did have TRT treatment as I've said. In 2008 I suffered a 2nd noise trauma but the hyperacusis did not return. It took 4 years for me to habituate to the tinnitus for the 2nd time. It now varies from: silent, mild, moderate and severe. It no-longer reaches extreme severe levels that would last for days. However, I still take clonazepam occasionally when it is severe and that's the only thing that will calm it down.
Perhaps when your ears settle down. You could try putting some dampening materal over the Waterpik to quieten the noise when in use, just a suggestion.
Hope you start to feel better soon.
Michael

 

[GregCA]

When I had H, my own voice would cause me pain, as would the simple sound of keys pressed into my keyboard when I would type.
Oddly enough, other sounds that were much louder didn't bother me as much. There was something about the "signature" of the sounds that seemed to be more determining than the loudness. Crumpling a plastic bag had some of the worst signatures.
I'm glad my H is very mild now. Only severe T. Some would say I should feel lucky I guess.

 

[vermillion]

I'm glad my H is very mild now.

Did it settle on it's own?

 

[GregCA]

Did it settle on it's own?

No, I had surgery (stapedotomy).

 

[Tinker Bell]

Oddly enough, other sounds that were much louder didn't bother me as much. There was something about the "signature" of the sounds that seemed to be more determining than the loudness. Crumpling a plastic bag had some of the worst signatures.

Did your tinnitus get louder to the sound of plastic bags crumpling? Mine rings much louder to plastic bags, paper and water -- as well as some other things but those are the most frequent offenders. I keep wondering if the stapedius muscle is part of my problem.

Did you have hearing loss, too?

 

[GregCA]

Did your tinnitus get louder to the sound of plastic bags crumpling?

I can't really answer that because the reaction to the noise was so severe (due to H), that I would quickly either block my ears or run away, so it wouldn't have time to affect my T. It was mostly Hyperacusis.

Did you have hearing loss, too?

Oh yeah. Still do.

 

[Tinker Bell]

I can't really answer that because the reaction to the noise was so severe (due to H), that I would quickly either block my ears or run away, so it wouldn't have time to affect my T. It was mostly Hyperacusis.


Oh yeah. Still do.

Thanks for replying! Mine immediately rings louder and even changes from it's usual sound to a higher pitch eeeeeee sound. Plugging my ears does not help, I just hear the high pitch sound.

I've lost high frequencies; I sometimes wonder if my tinnitus is reacting to the frequencies I've lost.

How long did you have hyperacusis before the stape surgery? Did you lose any hearing from the surgery? I have a friend who did, which is why I'm really curious about the procedure.

 

[GregCA]

How long did you have hyperacusis before the stape surgery?

A few weeks.

Did you lose any hearing from the surgery?

It looks like I regained most of the low frequencies (under 1 kHz), but I lost in the high frequencies. Hard to know whether it's the surgery or just the passing of time. It was about 10 dB loss, so the doctor said it was within "the margin of error", but of course I wish the "error" was on the other side...

 

[Tinker Bell]

A few weeks.

I'm on four months of it, super annoying. I never realized how often plastic bags are used in packaging everything from food to clothing.

Was it evident on examination that your stapedius was not working correctly? Did they consider Botox injections? I am so sorry that I'm asking a million questions. I'm just exhausted by how my tinnitus continually rings louder to very specific sounds.

My doctors have suggested it's part of the problem, but prefer giving it time in hopes it will heal on its own.

It was about 10 dB loss, so the doctor said it was within "the margin of error", but of course I wish the "error" was on the other side...

So true, the margin of error always seems to be lower for me too!

 

[GregCA]

Was it evident on examination that your stapedius was not working correctly? Did they consider Botox injections? I am so sorry that I'm asking a million questions. I'm just exhausted by how my tinnitus continually rings louder to very specific sounds.

No worries!
I was diagnosed with otosclerosis, which means the stapes bone is losing its mobility due to abnormal bone remodeling happening at the contact with the cochlea.
One way to solve that is to nuke the stapes and replace it with a prosthesis that acts as a piston sliding into a hole that gets drilled into the cochlea (through the stapes footplate). That restores the ossicular chain mobility.

That reduces the conductive losses and restores hearing. Apparently that also had a positive impact on my H, since it became quite mild post surgery.

So for me it was:
Pros: low frequencies (0-1 kHz) restored to normal thresholds. H reduced to very mild levels.
Cons: high frequencies dropped by 10 dB. Titanium in my ear (watch out for MRIs, etc). Loss of "natural parts" that can't be restored if a specific cure shows up. Expensive surgery (over $30K).

 

[Tinker Bell]

No worries!
I was diagnosed with otosclerosis, which means the stapes bone is losing its mobility due to abnormal bone remodeling happening at the contact with the cochlea.
One way to solve that is to nuke the stapes and replace it with a prosthesis that acts as a piston sliding into a hole that gets drilled into the cochlea (through the stapes footplate). That restores the ossicular chain mobility.

That reduces the conductive losses and restores hearing. Apparently that also had a positive impact on my H, since it became quite mild post surgery.

So for me it was:
Pros: low frequencies (0-1 kHz) restored to normal thresholds. H reduced to very mild levels.
Cons: high frequencies dropped by 10 dB. Titanium in my ear (watch out for MRIs, etc). Loss of "natural parts" that can't be restored if a specific cure shows up. Expensive surgery (over $30K).

Thank you so much for sharing this with me! Very helpful! It seems everyone's hearing loss cause is a little different but we're all stuck dealing with similar conditions.

I'm trying to be optimistic that the louder reaction to certain sounds will cease, I honestly feel like it would be a lot easier for me to deal with my tinnitus if that happened.

 

[Alue]

@Sen Was it from this thread? https://www.tinnitustalk.com/threads/receding-gumline.22283/

I doubt the device is loud enough to cause any auditory damage, but it certainly could cause a temporary spike.

You mention that you are unable to work, what do you do to take your mind off your challenges? I understand they can be disabling, I only ask because when I was unemployed there was too much time for me to be in my own head ruminating about things.

 

[Sen]

@Sen Was it from this thread? https://www.tinnitustalk.com/threads/receding-gumline.22283/

I doubt the device is loud enough to cause any auditory damage, but it certainly could cause a temporary spike.

You mention that you are unable to work, what do you do to take your mind off your challenges? I understand they can be disabling, I only ask because when I was unemployed there was too much time for me to be in my own head ruminating about things.

It is very loud. Look up some videos of it on youtube. They have to raise their voices so that they can be heard talking over it.

I don't do anything to take my mind off my challenges. I used to read and watch movies, but my brain fog has become so bad I just can't focus anymore. I can't spend much time on the computer or doing hobbies because of my hands (and I'm also poor, so I can't even really afford hobbies), so most of the time I just lay in bed and watch twitch streams on low volume. It's mindless and boring and a very pitiful existence.

 

[Michael Leigh]

q

It is very loud. Look up some videos of it on youtube.

It is loud @Sen no doubt. But there are various ways of reducing the noise. One could build suitable size box to house the unit and put sound proof deadening panels in it which will quieten the noise considerably. Or a much similar method, a thick towel placed over it will dampen the noise too. There are usually ways to get around things. I was having plaque problems and heading for receding gums and gingivitis. Since using this device these problems have disappeared.

 

[Sen]

q
It is loud @Sen no doubt. But there are various ways of reducing the noise. One could build suitable size box to house the unit and put sound proof deadening panels in it which will quieten the noise considerably. Or a much similar method, a thick towel placed over it will dampen the noise too. There are usually ways to get around things. I was having plaque problems and heading for receding gums and gingivitis. Since using this device these problems have disappeared.

It's not the noise from the base that was causing issues. Hearing protection worked fine against that. The issue was the noise it made against my teeth in my mouth. Wrapping the base in towels cannot not help with this.

 

[Michael Leigh]

The issue was the noise it made against my teeth in my mouth.

Oh..I thought it was the "noise from the base unit". In the three years I've been using it I haven't had any sensitivity problems using it against my teeth. You must be very sensitive. In that case I don't think there's a work around. This is unfortunate.

 

[Juan]

It's an electric water flosser.

http://i.imgur.com/lmSCR9l.png

And yes, I understand how bone conduction works. The noise originates from the base, not from the piece that goes into your mouth, but it vibrates through the cord and clacks against your teeth.

I do not have "clinically significant" hearing loss. I've gone to doctors about my condition. They check me for what they believe is the problem. I don't get to choose what they check for.

Ok, I understand what you say about the waterpik and the doctors. I can relate to your experience with doctors. Some of them just want to delete patients off their list as fast as possible when they do not know how to cure you or provide any help.

If it is possible to do this where you are, try to be outdoors more. This is very difficult when one has H but we do need to go out, even if it is just to be in the sun for a while, and also we need to exercise. This may seem obvious but it took me a while to realise that these things have a beneficial impact on our hearing too (if we do not run into noise of course)! Sun has vitamins and exercise gets the oxygen moving, which is also good.

I hope you feel better in a few days!

 

[Sen]

If it is possible to do this where you are, try to be outdoors more. This is very difficult when one has H but we do need to go out, even if it is just to be in the sun for a while, and also we need to exercise. This may seem obvious but it took me a while to realise that these things have a beneficial impact on our hearing too (if we do not run into noise of course)! Sun has vitamins and exercise gets the oxygen moving, which is also good.

Yeah, I totally agree with this. There is a big park within walking distance. Before recent events I was trying to get out for a walk every morning, and I was using the opportunity to help lessen my dependence on hearing protection by exposing myself to outside noises that I could tolerate (which was actually most of them, aside from dense traffic and lawnmowers and such. I had great improvement over the past 6 months.)

My setback has unfortunately made this much more difficult, and I don't feel motivated anymore. I'm becoming very depressed/anxious, and this combined with now increased pain and sound sensitivity, I just can't find the drive to drag myself out of the house. Even the sounds of birds chirping and my feet on the gravel are painful now. Maybe I will try tomorrow.

I hope you are doing well, Juan. Thanks for taking the time to respond!

 

[Juan]

Yeah, I totally agree with this. There is a big park within walking distance. Before recent events I was trying to get out for a walk every morning, and I was using the opportunity to help lessen my dependence on hearing protection by exposing myself to outside noises that I could tolerate (which was actually most of them, aside from dense traffic and lawnmowers and such. I had great improvement over the past 6 months.)

My setback has unfortunately made this much more difficult, and I don't feel motivated anymore. I'm becoming very depressed/anxious, and this combined with now increased pain and sound sensitivity, I just can't find the drive to drag myself out of the house. Even the sounds of birds chirping and my feet on the gravel are painful now. Maybe I will try tomorrow.

I hope you are doing well, Juan. Thanks for taking the time to respond!

Like you, I am having a bad streak of luck, H-wise. When this happens, I try to build confidence again. A trick is going out at odd hours even if, obviously, I dont feel like it (who would want to wake up at 5 am just to walk? or to go for a walk at 2 or 3 am, so late at night?). If you minimise the risk of going out to that park or walking around your neighbourhood, by choosing a specific time or day, and you go out and come back after a good, let's say, half an hour walk, you are going to start building your confidence again, and you are going to start feeling better.

Keep high spirits!

 

[PaulBe]

keys pressed into my keyboard when I would type.

That, for me, has largely settled, but at its worst it was one of the most repellent sensations I can think of.

 

[Sen]

I am doing a lot better now. Tinnitus has completely reverted to its baseline, and hyperacusis is about 60% back to "normal."

Much quicker recovery than I had expected.