Warning for People with Noxacusis: For the Love of God, Protect Your Ears!

[LilCC]

I've made a couple posts about this already, but I am pretty certain Kv7.2/7.3 channel openers will treat and eventually cure our noxacusis. A study published in 2015 found that opening these potassium channels in mice "suppressed the type II fiber's response to hair cell damage". There are people on this forum who claimed to be helped and even completely cured from hyperacusis by taking the potassium channel openers retigabine or flupirtine for a couple of months. Due to side effects these drugs had to be pulled from the market. Currently there are three medicines in development for various illnesses that target these channels; XEN-1101, QRL-101, and RL648_81 (developed specifically to prevent or cure tinnitus). Best case scenario XEN-1101 hits the US market in 2-3 years.

Because I do not want to wait that long, I am planning to take flupirtine (in coordination with my doctor) for a couple of months to see if I can cure my hyperacusis. I think I've found a way to acquire this medicine. It will probably be next week or the week after when I can get my hands on it. I will report back of course.

Keep us posted! I know there is only a hand of us with true noxacusis.

 

[AnthonyMcDonald]

I'm just worried about pulling something and making my hyperacusis worse but on the other hand I need to lose weight ASAP and a clean diet has done nothing so far.

You say you recovered from hyperacusis and tinnitus before, would you put that down to being in shape or because it wasn't as severe up until your accident?

I honestly don't think being in shape has anything to do with tinnitus or hyperacusis recovery.

 

[Brian Newman]

Brian, sorry, you probably answered this a million times before but how do you know you got stapes and tensor tympani damage? Did you get some sort of scan proving it? I want to see if there's a way to examine the damage but I'm coming up short and most ENTs dismiss me wanting to explore it.

You first learn about the function of the tensor tympani and the stapedius. There are tests for it too, but they are garbage like hearing tests. I think it's applied air in your ear and the machine reads the tensor tympani and stapedius movement. Those muscles are designed to protect your ears from noise. Tensor tympani contracts to tighten the eardrum. Stapedius tightens the stapes lowering vibrations going into the oval window. If the stapedius is hypermobile or damaged, things in that ear like chewing and your voice would seem extremely loud like loudness hyperacusis, maybe even some pain.

When I get pain from certain noise, I feel a wiggle deep in my ear, followed by pain. For 6 months with severe loudness hyperacusis my voice felt way too loud and most noise I would feel something constantly wiggling triggering my loudness hyperacusis. And some pain. Tensor tympani, I know I have that too because I can actually control mine, and it gets stuck sometimes being tightened and I feel it along with the low pitch tinnitus that goes away as soon as I can get it to decontract. In the morning especially when I yawn I get a crazy fluttering rumble. I have an otoscope and I look in my ear. When I trigger, I see the eardrum moving like crazy. That's the tensor tympani. My case is so severe because both my tensor and stapedius are damaged, along with my cochlear Type 2 nerve pain, along with some kind of head issues, either CSF leak or PLF.

If I just had one thing happen I would not be this bad but the worse things kept happening within a year. I'm going to have to slowly start treating easy individual issues to get anywhere. And you must see a neurotologist. Everybody here gets gaslighted by ENTs. ENTs are a joke, I have seen a few good ones who were younger and more open, but neurotologists study inner ear conditions specifically. They will be better to work with because they know about this stuff. And the hyperacusis surgery at the Silverstein Institute is one of the things I will have to do eventually. Part of the surgery is reinforcing the stapes bone, helping the stapedius calm down. I think it is a procedure most people with hyperacusis should try if they have done the homework.

Obviously there are pitfalls with surgery that have kept me from doing it. Part of the surgery is also reinforcing the round window. The round window must remain open if we want any regen meds in the future. I will probably ask him to just reinforce the oval window and stapes and leave the round window open and see how it goes.

Second, tinnitus is a big factor for me. Apparently most people who did it their tinnitus is ok. My tinnitus is usually not complete hell but can get really bad really fast. I'm waiting for OTO-313 and the Dr. Shore device as a backup so I'm not stuck with severe tinnitus and noxacusis if the surgery doesn't help.

 

[Brian Newman]

The hyperacusis surgery is Dr. Silverstein's surgery right? Will you wait to see if any treatments are developed first, or are you doing the surgery after the treatments come out? Do you know how reliable the Dr. Silverstein's surgery is for noxacusis? Sorry for all the questions, I ask because I also have noxacusis, which has left me almost completely home bound.

I just posted a big paragraph above right now. Read that too. Yeah I feel you I lost everything. Homebound for a year. I mean I go to acupuncture but I race home after and only leave at 3 am for runs. Yeah so to sum up what I said, I'm waiting for OTO-313 and Dr. Shore device to come out so I have a backup for my tinnitus in case it goes to shit. And the surgery can help noxacusis but as we know, some loudness hyperacusis people get confused about the difference and say it helped their pain, and so Silverstein says that. Not the same thing. I will probably do the surgery a little modified. I will have my stapes reinforced with the oval window, and leave the round window open. Not sure if it will affect the outcome. I will ask next time I talk to him.

 

[Brian Newman]

I'm just worried about pulling something and making my hyperacusis worse but on the other hand I need to lose weight ASAP and a clean diet has done nothing so far.

You say you recovered from hyperacusis and tinnitus before, would you put that down to being in shape or because it wasn't as severe up until your accident?

Probably both. I had perfect ears when I was 18. Never been to a concert. Only a few clubs. I was good to my ears. I took care of my body. I shot my AR15 without hearing protection and my right ear was closer and I immediately developed tinnitus after the shots. Left ear got no ringing at all. It was only an inch or two farther away. My ears were muffled for weeks and my tinnitus was like a 5 or 6. I had moderate hyperacusis for 8 months after. I let my ears rest. I still was around low level noise and had no issues with my phone or the TV or driving but I did not like loud sounds, they spiked my tinnitus and really bothers my ears.

For 10 months I pretty much only went to the gym and collage classes. No restaurants, no parties, no loud places. I wore an earplug in the tinnitus ear at the gym. I slowly started doing more things again when the tinnitus settled and stopped spiking to everything. My ear sensitivity slowly got better over time. After 14 months my tinnitus would get so quiet I would barely be able to hear it. Sometimes it would go away. I remember every once in a while I would go into a quiet room and plug my ears to see if I would hear the ringing and I would feel so relieved. It was truly a blessing. I felt like I dodged a damn bullet. My tinnitus was one of the reactive ones so slowly over time I started caring less and it started coming back.

I was always busy so I always made sure I was never in a quiet room and slept with cricket noises on. It was kinda loud but I would forget about it for months. I had permanent hyperacusis at mild levels like fireworks, loud cars, ambulances I would plug my ears and try to avoid that stuff. I never had noxacusis and I never thought much about the hyperacusis. Because it never got worse. I would only get tinnitus spikes. I definitely contribute my recovery because it was my first trauma, ears heal much better after the first time. After further damage they don't. I also think I was so healthy and all the exercise helped a little. When I got this I didn't know how to deal with it because I never had (lingering) pain from the TV before. My ears got really messed up lol. Still nothing shows up on any extended audiogram, speech in noise, nothing. Pretty funny.

 

[Brian Newman]

I've made a couple posts about this already, but I am pretty certain Kv7.2/7.3 channel openers will treat and eventually cure our noxacusis. A study published in 2015 found that opening these potassium channels in mice "suppressed the type II fiber's response to hair cell damage". There are people on this forum who claimed to be helped and even completely cured from hyperacusis by taking the potassium channel openers retigabine or flupirtine for a couple of months. Due to side effects these drugs had to be pulled from the market. Currently there are three medicines in development for various illnesses that target these channels; XEN-1101, QRL-101, and RL648_81 (developed specifically to prevent or cure tinnitus). Best case scenario XEN-1101 hits the US market in 2-3 years.

Because I do not want to wait that long, I am planning to take flupirtine (in coordination with my doctor) for a couple of months to see if I can cure my hyperacusis. I think I've found a way to acquire this medicine. It will probably be next week or the week after when I can get my hands on it. I will report back of course.

Yeah I read that article. Pretty interesting. It's worth a try. Let me know how it goes when you take that stuff. Hopefully XEN-1101 comes out and it helps. I probably won't try it unless a few people get good results from it. But yeah, it has potential to silence the Type 2s. This is in mice so I'm still a little skeptical. But I won't rule it out.

Everything with this is all theory anyways. Gotta try everything.

 

[Shizune]

When I get pain from certain noise, I feel a wiggle deep in my ear, followed by pain. For 6 months with severe loudness hyperacusis my voice felt way too loud and most noise I would feel something constantly wiggling triggering my loudness hyperacusis. And some pain. Tensor tympani, I know I have that too because I can actually control mine, and it gets stuck sometimes being tightened and I feel it along with the low pitch tinnitus that goes away as soon as I can get it to decontract. In the morning especially when I yawn I get a crazy fluttering rumble. I have an otoscope and I look in my ear. When I trigger, I see the eardrum moving like crazy. That's the tensor tympani. My case is so severe because both my tensor and stapedius are damaged, along with my cochlear Type 2 nerve pain, along with some kind of head issues, either CSF leak or PLF.

If I just had one thing happen I would not be this bad but the worse things kept happening within a year. I'm going to have to slowly start treating easy individual issues to get anywhere. And you must see a neurotologist. Everybody here gets gaslighted by ENTs. ENTs are a joke, I have seen a few good ones who were younger and more open, but neurotologists study inner ear conditions specifically. They will be better to work with because they know about this stuff. And the hyperacusis surgery at the Silverstein Institute is one of the things I will have to do eventually. Part of the surgery is reinforcing the stapes bone, helping the stapedius calm down. I think it is a procedure most people with hyperacusis should try if they have done the homework.

Obviously there are pitfalls with surgery that have kept me from doing it. Part of the surgery is also reinforcing the round window. The round window must remain open if we want any regen meds in the future. I will probably ask him to just reinforce the oval window and stapes and leave the round window open and see how it goes.

Second, tinnitus is a big factor for me. Apparently most people who did it their tinnitus is ok. My tinnitus is usually not complete hell but can get really bad really fast. I'm waiting for OTO-313 and the Dr. Shore device as a backup so I'm not stuck with severe tinnitus and noxacusis if the surgery doesn't help.

The ENT I saw was a neurotologist but dismissed my hyperacusis by suggesting the usual and didn't respond when I tried to ask about alternative testing methods/pushed back on the psychological aspect and suggested actual inner ear damage. I brought up Silverstein surgery but he insisted it would just amplify things and make things worse, and that the data wasn't there in his opinion. I'd still like to try it too.

Our issues sound similar. My tensor tympani is very wiggly too. I get thumps and spasms from practically nothing, including my own internal head noises like if I click my teeth by mistake. I am wondering if otoscopic videos can be used as any evidence for doctors, because so far when I try to go to appointments and trigger mine with sound it doesn't work or they say they can't see anything. Ironically maybe my anxiety is making my ear behave for once instead of the opposite...

My voice is also too loud for me to speak and I lose chewing tolerance for pretty much everything as more time goes by. Like you said too the doctor said it can only be detected really through a tympanometry, which I'm hesitant to do... though it seems people here say it's not as bad as some other tests. I wasn't sure if you had tried anything so far. Right now I'm just mostly trying to prove that there is something physically wrong with me, which seems so impossible with these issues... and at the expense of potential worsening.

I don't get chronic noxacusis but when I do experience pain, which is either from too much noise or things like trying to exercise, it does feel like it's a middle ear muscle ache for me as well.

I consulted with Silverstein last March 2021 and asked about FX-322 and other injected drugs and they said they had an updated surgery where the round window is left open to account for it. Not sure if you had consulted prior. I wonder if you can get the same benefits from leaving the round window open vs. reinforcing both and the stapes.

 

[Brian Newman]

The ENT I saw was a neurotologist but dismissed my hyperacusis by suggesting the usual and didn't respond when I tried to ask about alternative testing methods/pushed back on the psychological aspect and suggested actual inner ear damage. I brought up Silverstein surgery but he insisted it would just amplify things and make things worse, and that the data wasn't there in his opinion. I'd still like to try it too.

Our issues sound similar. My tensor tympani is very wiggly too. I get thumps and spasms from practically nothing, including my own internal head noises like if I click my teeth by mistake. I am wondering if otoscopic videos can be used as any evidence for doctors, because so far when I try to go to appointments and trigger mine with sound it doesn't work or they say they can't see anything. Ironically maybe my anxiety is making my ear behave for once instead of the opposite...

My voice is also too loud for me to speak and I lose chewing tolerance for pretty much everything as more time goes by. Like you said too the doctor said it can only be detected really through a tympanometry, which I'm hesitant to do... though it seems people here say it's not as bad as some other tests. I wasn't sure if you had tried anything so far. Right now I'm just mostly trying to prove that there is something physically wrong with me, which seems so impossible with these issues... and at the expense of potential worsening.

I don't get chronic noxacusis but when I do experience pain, which is either from too much noise or things like trying to exercise, it does feel like it's a middle ear muscle ache for me as well.

I consulted with Silverstein last March 2021 and asked about FX-322 and other injected drugs and they said they had an updated surgery where the round window is left open to account for it. Not sure if you had consulted prior. I wonder if you can get the same benefits from leaving the round window open vs. reinforcing both and the stapes.

Oh wow, yeah some of those doctors too. Man they need to read more on this. Yeah, if your voice is too loud for you, especially one year in, your stapes could be messed up with the tensor tympani. They never told me about the updated surgery but that's good that he has done it before. My issues were much much better middle ear wise until yesterday. I sneezed really loud and now my left ear is vibrating when I talk and it hurts. Probably middle ear related. You should get the same benefits I would hope with the round window open.

 

[Shizune]

Oh wow, yeah some of those doctors too. Man they need to read more on this. Yeah, if your voice is too loud for you, especially one year in, your stapes could be messed up with the tensor tympani. They never told me about the updated surgery but that's good that he has done it before. My issues were much much better middle ear wise until yesterday. I sneezed really loud and now my left ear is vibrating when I talk and it hurts. Probably middle ear related. You should get the same benefits I would hope with the round window open.

Yeah my doctor said that it was due to untreated depression and anxiety. I told him in all my years of depression I have never had this issue until the accident that caused all this. Asked him if we could explore another type of test to test for ear damage. He just said to try TRT and antidepressants and then did not humor me further.

I'm pushing 2 years next month, happy anniversary to me. I lost my ability to talk at a normal level I think around 9 months in. I always attribute my worsening to the occlusion effect caused by some bad custom plugs I had, which would always leave me with ear fullness, so I do wonder if something is up in my middle ear.

Interesting you mentioned sneezing because I remember breaking out into a sneezing fit last summer and then I had pain for days, and like I said my noxacusis isn't really chronic. I've only gotten occasional pain and the big times I got it were from sneezing and lifting weights. So yeah I definitely think it's middle ear related too. So I hope that stapes reinforcement can help us both if we get the surgery done. I think you should mention what I said next time you consult with him just to reconfirm that it's the truth. I find it weird it wasn't mentioned to you.

I'm also curious if when you feel pain you have a very soft "popping" noise within your ear?

Not like an ear pop you'd get from flying/changing elevations but almost like tiny little air bubbles are escaping?

I will get some pain and then feel the little pop and sometimes it will resolve as soon as the pop happens. Or it will subside but then come back and linger for a bit afterwards

 

[Bimmerboy]

Probably both. I had perfect ears when I was 18. Never been to a concert. Only a few clubs. I was good to my ears. I took care of my body. I shot my AR15 without hearing protection and my right ear was closer and I immediately developed tinnitus after the shots. Left ear got no ringing at all. It was only an inch or two farther away. My ears were muffled for weeks and my tinnitus was like a 5 or 6. I had moderate hyperacusis for 8 months after. I let my ears rest. I still was around low level noise and had no issues with my phone or the TV or driving but I did not like loud sounds, they spiked my tinnitus and really bothers my ears.

For 10 months I pretty much only went to the gym and collage classes. No restaurants, no parties, no loud places. I wore an earplug in the tinnitus ear at the gym. I slowly started doing more things again when the tinnitus settled and stopped spiking to everything. My ear sensitivity slowly got better over time. After 14 months my tinnitus would get so quiet I would barely be able to hear it. Sometimes it would go away. I remember every once in a while I would go into a quiet room and plug my ears to see if I would hear the ringing and I would feel so relieved. It was truly a blessing. I felt like I dodged a damn bullet. My tinnitus was one of the reactive ones so slowly over time I started caring less and it started coming back.

I was always busy so I always made sure I was never in a quiet room and slept with cricket noises on. It was kinda loud but I would forget about it for months. I had permanent hyperacusis at mild levels like fireworks, loud cars, ambulances I would plug my ears and try to avoid that stuff. I never had noxacusis and I never thought much about the hyperacusis. Because it never got worse. I would only get tinnitus spikes. I definitely contribute my recovery because it was my first trauma, ears heal much better after the first time. After further damage they don't. I also think I was so healthy and all the exercise helped a little. When I got this I didn't know how to deal with it because I never had (lingering) pain from the TV before. My ears got really messed up lol. Still nothing shows up on any extended audiogram, speech in noise, nothing. Pretty funny.

Such bullshit you went through, I'm sorry dude. Hopefully there's a way you can return back to at least having moderate hyperacusis or even better it being gone.

 

[Brian Newman]

Yeah my doctor said that it was due to untreated depression and anxiety. I told him in all my years of depression I have never had this issue until the accident that caused all this. Asked him if we could explore another type of test to test for ear damage. He just said to try TRT and antidepressants and then did not humor me further.

I'm pushing 2 years next month, happy anniversary to me. I lost my ability to talk at a normal level I think around 9 months in. I always attribute my worsening to the occlusion effect caused by some bad custom plugs I had, which would always leave me with ear fullness, so I do wonder if something is up in my middle ear.

Interesting you mentioned sneezing because I remember breaking out into a sneezing fit last summer and then I had pain for days, and like I said my noxacusis isn't really chronic. I've only gotten occasional pain and the big times I got it were from sneezing and lifting weights. So yeah I definitely think it's middle ear related too. So I hope that stapes reinforcement can help us both if we get the surgery done. I think you should mention what I said next time you consult with him just to reconfirm that it's the truth. I find it weird it wasn't mentioned to you.

I'm also curious if when you feel pain you have a very soft "popping" noise within your ear?

Not like an ear pop you'd get from flying/changing elevations but almost like tiny little air bubbles are escaping?

I will get some pain and then feel the little pop and sometimes it will resolve as soon as the pop happens. Or it will subside but then come back and linger for a bit afterwards

I don't have any popping noises, it's more like a wiggle deep in my ear followed by pain. I'm pretty convinced it's the stapes. I did hear a snap when I damaged it followed by my tensor tympani going crazy. Yeah I definitely think the surgery will fix my stapes allowing me to talk normally again. I was slowly getting there with acupuncture. I'm also curious to see if the round window being covered does that much covered up. Maybe not. I'm curious to see how much of my pain will be dampened from just the oval window and stapes being packed. I think for me to fully recover I'm going to need to do the surgery regardless, and I need to find out if I have a PLF in my other ear, or find out if I have a CSF leak because that is keeping me from exercising the way I want to. Then obviously hearing regen meds in the future.

I would think life would be much better for me. My stapes was better for talking for a while, actually most of this year, but then I quietly yelled and felt it vibrate and it immediately started hurting to talk again. Curious to see if acupuncture helps. I think it will. Starting back up again in a few weeks and will be continuing twice a week for a year. Fingers crossed.

 

[Brian Newman]

Such bullshit you went through, I'm sorry dude. Hopefully there's a way you can return back to at least having moderate hyperacusis or even better it being gone.

Thx brother, I hope every day.

 

[StoneInFocus]

I honestly don't think being in shape has anything to do with tinnitus or hyperacusis recovery.

Disagree. Better shape/weight = better blood circulation and decreased heart rate. And there's also tons of other benefits of losing weight such as better sleep and a better immune system. All of which helps one to cope with these conditions better, including psychologically.

 

[AxEars]

Disagree. Better shape/weight = better blood circulation and decreased heart rate. And there's also tons of other benefits of losing weight such as better sleep and a better immune system. All of which helps one to cope with these conditions better, including psychologically.

+1 to this. It helps. After my onset I dropped vaping (still going through that withdrawal), drinking. Fixed my circadian rhythm. Doing the whole supplement route (Zinc, Magnesium, B12, D3) just for blood flow alone. It's not a magic fix and my purpose is not to dismiss the pain in this thread, but every little thing counts. Body health can't hurt, even if it improves symptoms by .01.

 

[Brian Newman]

Disagree. Better shape/weight = better blood circulation and decreased heart rate. And there's also tons of other benefits of losing weight such as better sleep and a better immune system. All of which helps one to cope with these conditions better, including psychologically.

Yeah, shit, exercise helps me. Tinnitus gets worse but noxacusis calms down for sure. I still gotta be in quiet as crap but it keeps me from dying.

 

[Diego LR]

@Brian Newman,

Sorry to see you struggling like this. I am sure that there must be a medication for the pain, Lyrica or even morphine. Have you tried any?

 

[Lane]

Lyrica

Lyrica can cause tinnitus. Can mostly likely exacerbate existing tinnitus.

 

[dan]

Hello Guys,

I am soooo sorry to hear that you struggle so much. I think I might have joined the club and I am scared to death so I would appreciate any advice.

Long story short - I developed tinnitus and hyperacusis from a caloric test in October last year. Tinnitus started with a hissing sound and kept adding new tones. Now I have 7-8 tones and it feels like every week or so it keeps adding new tones and increasing the baseline.

My hyperacusis was very bad at the beginning but it slowly started improving. I did not leave my apartment without earplugs and I was able to do most of the stuff with them - socialize, going to the grocery store, going to the office, travelling with car, train, visiting the mall for shopping etc. This did not affect my hyperacusis as long as I was wearing earplugs.

There were a few setbacks from the kitchen and Valsalva maneuver that lasted only several days but hyperacusis got back to its normal levels. Slowly, low level sounds started not to bother me so much - flushing the toilet, flipping switches, paper rumbling etc. At home I was not wearing earplugs and I used a fountain to enrich myself. I played masking sounds at night with no problem. I was able to listed to the TV or music at a moderate volume without hearing protection.

However it all changed after I stupidly decided to go to a cafe/shisha bar for 30 minutes. I made a 5 minute break, I was wearing my earplugs but It felt too loud so I left. Tinnitus was impacted right away and hyperacusis struck the next day. My tolerance dropped so much that I had to listen again to the TV on volume 1 or 2. After a week it got stable but not to the previous level. However, I was able to do most of the stuff with earplugs again.

But maybe my ears got much more vulnerable after this. I went home for Christmas using a two hour train ride which I had done 5-6 times since hyperacusis started with no issues at all. However, this time my tolerance dropped significantly. Then after a 2 hour stay with my relatives (again using earplugs) I felt how intrusive it can get. Everything hurt. For the first time I had to rely on earplugs all day and even then sound kept hurting my ears.

This did go away and I improved a little for a week. Then I took a train again with double protection to go to my parents' house and I was okay. Next day I was able to speak with them without earplugs and only occasionally their voices hurt. It was like my normal level.

Then I felt two setbacks which would not set me back for sure before. First one was a bomb outside my house which was so loud. My hyperacusis was impacted almost immediately. A day afterwards a guy honked in front of me and this is what brought my tolerance to this nightmare level - now every little noise irritates me, I have pain (sometimes behind the ear, sometimes in the ear canal from low noises. Sometimes I would wake up with it).

This was a month ago and I have not seen any improvements since then. My tinnitus is horrible, super reactive, and I keep adding new tones and spikes from talking now.

I try to stay inside as much as possible but I can't isolate like this. I go out for a walk in the late evenings but now I have to wear earplugs and earmuffs and even then the sound of a passing car or people's voices hurt. It was not like that at all before! My voice is too loud for me, my breathing and every little sound is irritating. I cannot seem to find the balance. I tried with pink noise before I got severe, but it irritated my tinnitus so I stopped. I am so scared because before this honks and other loud stuff did not set me back as long as I had earplugs in. And if I got a setback from something, it would always go back to my baseline in one week tops. I only had pain from time to time.

Now it has been a month - no improvement. I barely go to work using taxi and try to stay away from the several people in the office. It is really quiet there but I have to have my earplugs in at all times because noises hurt.

Please let me know what I can do, some remedies, supplements, tactics, diets - anything I can try. I am so scared that I might not go back to where I was and I feel worsening in hyperacusis and tinnitus every day.

I was considering stem cells before my hyperacusis worsened so much. Now I cannot say if a 4 hour one-way trip to the hospital will set me back even more and irreversibly. I want to do it but I am so scared. I even contacted a homeopath that cured several cases of hyperacusis but her taxes are just too much - 450 dollars initially, then 400 dollars for next visit, 300 from then on etc. you get the point. I am so beyond despair that I am willing to pay.

I hope you are improving.

What kind of bomb was outside your house?

Were you wearing earplugs when the car honked?

 

[Brian Newman]

I am sure that there must be a medication for the pain, Lyrica or even morphine. Have you tried any?

Just saw this, and wish, trust me, if tinnitus wasn't a factor, I would be popping oxy and injecting morphine every day. My tinnitus isn't catastrophic and I cannot let it get that way. My tinnitus is extremely reactive and spikes a lot now. My ears get worse from literally everything I've taken except for magnesium and lipoflavonoids. I had 6 really good weeks first time I had pain free days and it was completely erased from eating the wrong yogurt. Had a weird reaction and ever since my body feels like it's being burnt in a furnace. And guess what it affected, my ears lol.

Really infuriating. Was able to have friends over and talk without earplugs, drive to acupuncture doubled up, go to my parents and say hi, play Xbox and talk on the mic through subtitles, run at night, I was getting life back a little. Now my ears are worse than ever, I'm still doing acupuncture, it definitely still helps but it's the only thing I've found that does not worsen my ears. Just expensive for how often I go.

I'm almost positive drugs would bring my tinnitus to horrible levels, that with my level of noxacusis is game over. Gotta be careful with my next move.

 

[Diego LR]

Just saw this, and wish, trust me, if tinnitus wasn't a factor, I would be popping oxy and injecting morphine every day. My tinnitus isn't catastrophic and I cannot let it get that way. My tinnitus is extremely reactive and spikes a lot now. My ears get worse from literally everything I've taken except for magnesium and lipoflavonoids. I had 6 really good weeks first time I had pain free days and it was completely erased from eating the wrong yogurt. Had a weird reaction and ever since my body feels like it's being burnt in a furnace. And guess what it affected, my ears lol.

Really infuriating. Was able to have friends over and talk without earplugs, drive to acupuncture doubled up, go to my parents and say hi, play Xbox and talk on the mic through subtitles, run at night, I was getting life back a little. Now my ears are worse than ever, I'm still doing acupuncture, it definitely still helps but it's the only thing I've found that does not worsen my ears. Just expensive for how often I go.

I'm almost positive drugs would bring my tinnitus to horrible levels, that with my level of noxacusis is game over. Gotta be careful with my next move.

I also have to be very careful with every meds (antidepressants, antiepileptics etc). I also have an increased tinnitus and sometimes pains from certain foods, I thought I was the only one. Yogurt is a big no for me. I now know the safe foods after a process of trial and error. But anything, even water, will increase temporarily my tinnitus. I think my tinnitus and hyperacusis was caused by a stomach nerve damage.

5 months ago I was in a bad state getting strong headaches just from drinking water. Since taking Flurpax 5 mg I am pain free, my tinnitus is less reactive and a bit better. I also take Lyrica 75 mg to help me sleep which miraculously does not affect my tinnitus.

 

[Brian Newman]

I also have to be very careful with every meds (antidepressants, antiepileptics etc). I also have an increased tinnitus and sometimes pains from certain foods, I thought I was the only one. Yogurt is a big no for me. I now know the safe foods after a process of trial and error. But anything, even water, will increase temporarily my tinnitus. I think my tinnitus and hyperacusis was caused by a stomach nerve damage.

5 months ago I was in a bad state getting strong headaches just from drinking water. Since taking Flurpax 5 mg I am pain free, my tinnitus is less reactive and a bit better. I also take Lyrica 75 mg to help me sleep which miraculously does not affect my tinnitus.

Wow that's crazy, yeah some people just can't change anything in their routine or diet or it messes things up, others can pop Xanax every day and eat McDonald's and have no issues.

I was fine with yogurt which was strange but Instacart got the wrong address for grocery delivery, they told me to keep the groceries. Skyr yogurt was in that batch, I ate a bunch of it, later whole body felt messed up, everything was burning. Ears have been bad ever since. Now I can't eat crap. This condition lol.

 

[Lane]

Now my ears are worse than ever, I'm still doing acupuncture, it definitely still helps but it's the only thing I've found that does not worsen my ears. Just expensive for how often I go.

I've been doing self-acupuncture for about 3-4 years now--virtually cost free. Just something for you to consider.

 

[LloydB]

I've been doing self-acupuncture for about 3-4 years now--virtually cost free. Just something for you to consider.

I was thinking about this Saturday whilst I was lying there spending another £35. How often can you do it? Seems to last about 48 hours for me.

 

[Brian Newman]

I've been doing self-acupuncture for about 3-4 years now--virtually cost free. Just something for you to consider.

Yeah if I learned how to do it very well, that's a good idea. I usually don't get worse from the short drives over but I really hate leaving the house during the day. Everything hurts. Would save me a lot of money too.

 

[AbeS]

After multiple minor noise incidents last week I'm having pain in my bad ear that is far beyond my usual burning sensation. It feels like it's coming from deep inside the ear and I feel pain in my face and even my arm on that side. It is really really horrible. It's been near constant for four days and I'm getting very scared now to be honest.

Is there anything I can do?

 

[Lane]

Is there anything I can do?

Hi @AbeS -- Sorry to hear about your horrible situation. At a time when my ears were gradually getting worsening burning sensations, I did some self-acupuncture on my ears, and the burning dissipated almost entirely with one session. A couple of followup sessions eliminated it completely.

I also massage my ears every day. In addition, I'll sometimes put some castor oil on the outside of my ears, and put a warm heat source on them (I use hot water bottles). It feels like it has a remarkably calming effect on my whole auditory cortex. I also regularly apply DMSO and Magnesium to my ears, which I started a thread on that (link below).

All the Best!

DMSO & Magnesium Oil for Tonic Tensor Tympani Syndrome (TTTS)

 

[Aaron91]

Hi @AbeS -- Sorry to hear about your horrible situation. At a time when my ears were gradually getting worsening burning sensations, I did some self-acupuncture on my ears, and the burning dissipated almost entirely with one session. A couple of followup sessions eliminated it completely.

I also massage my ears every day. In addition, I'll sometimes put some castor oil on the outside of my ears, and put a warm heat source on them (I use hot water bottles). It feels like it has a remarkably calming effect on my whole auditory cortex. I also regularly apply DMSO and Magnesium to my ears, which I started a thread on that (link below).

All the Best!

DMSO & Magnesium Oil for Tonic Tensor Tympani Syndrome (TTTS)

Did you have any sound-induced neuralgia in your jaw?

 

[Lane]

Did you have any sound-induced neuralgia in your jaw?

Hi @Aaron91 -- I'm not exactly sure what that is, though I assume it's nerve damage in the jaw somehow caused by excessive noise (or perhaps clenching of teeth?). If that's the case, I'd say no, as I've been very scrupulous about protecting my ears from excessive sound for many years. My tinnitus was caused by a anti-nausea medication, but I think it's exacerbated by various structural abnormalities in my head, neck, and upper back areas (possibly my jaw area(s) as well. I massage my TMJ areas daily.

 

[AbeS]

Hi @AbeS -- Sorry to hear about your horrible situation. At a time when my ears were gradually getting worsening burning sensations, I did some self-acupuncture on my ears, and the burning dissipated almost entirely with one session. A couple of followup sessions eliminated it completely.

I also massage my ears every day. In addition, I'll sometimes put some castor oil on the outside of my ears, and put a warm heat source on them (I use hot water bottles). It feels like it has a remarkably calming effect on my whole auditory cortex. I also regularly apply DMSO and Magnesium to my ears, which I started a thread on that (link below).

All the Best!

DMSO & Magnesium Oil for Tonic Tensor Tympani Syndrome (TTTS)

Thanks for your reply, it means a lot.

I don't know if I would be comfortable doing acupuncture on myself, but I will look into DMSO and Magnesium. Where exactly do you apply the oil?

I just tried putting a hot water bottle to my ear, and I think it changed one of my tinnitus tones. Odd.

 

[Brian Newman]

Thanks for your reply, it means a lot.

I don't know if I would be comfortable doing acupuncture on myself, but I will look into DMSO and Magnesium. Where exactly do you apply the oil?

I just tried putting a hot water bottle to my ear, and I think it changed one of my tinnitus tones. Odd.

I would try acupuncture at a good clinic. Make sure the acupuncturist studied in China, they are better trained there. I still go twice a week; that's the most noise I can manage. I can handle road noise on good days now with double protection. I still have 0 tolerance for high pitch noise, especially brake squeals and door squeaks. If I make it to acupuncture and back with no incidents and no bad noises going into my house, my ears calm down a bit. I've been taking 100 mg of CBD a day, and 6 Lipoflavonoid pills a day. They both help a little.

Running was helping a lot but after my last setback, the occlusion from the earplug in my bad ear started causing pain. Then not wearing the earplug I get pain from crickets and other noises at night. I had to stop running for a bit but I ran last night and the pain didn't get worse.

If you had minor incidents you should recover, the big ones are what left me permanently worse.