Lurking on Tinnitus Talk Since 2016 → Now with Pain Hyperacusis from Naproxen

[yeezysqueezy]

TL;DR: I had mild tinnitus for years with history of concussion. Tinnitus worsened 10-fold and got pain hyperacusis (stabbing pain, burning pain now sometimes in silence, much worse on the right) after 5-day course of Naproxen for autoimmune issue in January 2023. I get intermittent fullness and TONS of TTTS spasms on the left. I got a morse code tone on the right that seems to have improved. I'm in third year of medical school but will now probably never become a doctor. Terrified of this ruining my relationship (boyfriend of 4 years and I were probably going to be engaged next year). Painfully isolated from everyone in my life. Life has come to a screeching halt and I don't know what I should be doing right now/how to survive the "waiting" period.​

Hi everyone. Looking for some support/advice/a listening ear from anyone who is willing. I'm trying to keep my head high but today has just felt like rock bottom for me. Wondering when I will run out of tears.

Finally made an account and now posting after almost 7 years on and off reading of Tinnitus Talk. I've gained so much valuable information here over the years and I think of everyone here frequently.

So I guess to share some of my story (some details may be irrelevant but thought I would include just in case). Since I was pretty young, I've loved EDM music and this was probably the beginning of my downfall. Music was always my escape. I always kept my earbuds at less than 30% but loved blasting it in the car (not sure what my reasoning was there).

When I was a sophomore in college, a drunk girl I was trying to help by taking her home to her dorm smashed my head in a car door and gave me a concussion. Starting 3 days later, I had 24/7 eye pain that turned out to be migraine but wasn't diagnosed or treated for 3 years. Looking back I also felt like I started to think things were louder when I would go to live music events.

Less than a year later, I went to a Zhu show, which I was so pumped about. I have a vague memory that I meant to bring earplugs (would have been the first time wearing them for me) but then forgot them because I was in a rush. It was pretty much in a small basement with concrete walls and immediately was too loud for me. I went with a friend so I didn't want to leave, so I went to the back and just plugged my ears. I don't remember how long we were there, probably not more than a half hour until my friend said we should just leave, but the damage was done. I had the dreaded ringing. Was told by ENT not to worry about it and that it would go away. I saw Dr. Timothy Hain and he did a full work-up, found a small notch on my otoacoustic emissions but it didn't actually correlate with my tinnitus pitch I guess. Great doctor and was sorry there wasn't more he could do for me. Recommended masking and being very careful with loud noise.

I had custom Westone musicians' earplugs made with the highest filter (but not solid) and wore them faithfully in bars, clubs, concerts, festivals etc. although I took off at least 3 months from anything loud. I continued to freak out about the tinnitus for awhile but it slowly faded away until I realized at some point in 2020 or 2021 it was barely there even with foam earplugs in.

In September 2021, I went to an EDM festival with my boyfriend and wore my custom Westones as I always did. Apparently it wasn't enough or the earplugs no longer fit my ear canals properly because I was left with a permanent worsening (although it still wasn't that bad looking back) and mild loudness hyperacusis (but I didn't know the name back then ironically). I became a mental basket case for awhile but managed to keep going to school. ENT gave me intratympanic Dexamethasone in the left ear (worse ear) but then, after I had an audiogram which didn't show any hearing loss, she didn't want to continue. Told me to ask my GP for some Xanax but I managed without. I slept with a fan and it would aggravate me in some situations (taking one of my 9 hour board exams for medical school), but a few months ago I felt like I had mostly made peace with it.

In October 2022, I had a PRP injection into my ankle and was non weight bearing for a week for an old stress fracture that had gone misdiagnosed for ages. I had to hop around my apartment on one foot and use a knee scooter to get to the hospital for my med school rotations. Basically, both ankles soon ended up f'd up with pain all over and nobody could figure out why until they did an MRI and found bone marrow edema all over and eventually rheumatology said the juvenile rheumatoid arthritis I had as a teen had come out of remission. I had been barely able to get around for over a month at this point and was dying for any relief. The rheumatologist recommended an NSAID to start with. I had some awareness that NSAIDs can be bad for your ears but I thought it was only for long periods and I had no idea how severe it could be. I asked about Naproxen since I had used it for 2 weeks every day when I went hiking out west on my bum ankle and had NO changes in my tinnitus. The rheumatologist said he would be good with that so I started on prescription dose (500 mg BID) Naproxen on January 11, 2023. By day 4, I woke up and realized I could hear my tinnitus over my fan. I took one more dose and then stopped. I also got fullness/a muffled feeling in my left ear and tons of TTTS spasms from the tiniest sounds. My normal tinnitus tones were magnified 10x and I got a new morse code tone on the right. I could no longer mask my tinnitus as it would just "ride over" the sound of my fan or other masking noise.

I thought for sure it would improve after stopping the Naproxen, especially since I was on it such a short time. I got on oral Prednisone within a few days, which was rough because the side effects are terrible for me, especially the insomnia and mood stuff. ENT wouldn't do intratympanic Dexamethasone, said it couldn't be the Naproxen, and blamed it on my migraines, even though I told him my migraines have been exceedingly well controlled on meds over the past year. But it continued to get worse and slowly things started to sound too loud again. I was on my family medicine rotation trying to look in a little girl's ear while she was crying and her cry was ear piercing to me. Then I switched to my OB/Gyn rotation and the fetal heart monitors were horrendous and I couldn't stand the sounds of the monitors in the operating room or the crying of the babies. I tried to wear earplugs but I could barely communicate with my residents and attendings who grade me. When I was scrubbed in for surgery, I couldn't pop an earplug out for a second to hear what someone was saying to me without breaking the sterile field and getting kicked out. A week and a half into this hell and being unable to sleep and having panic attacks waking me up and nearly crying at the hospital, I made the decision to withdraw from the rotation, which I'm so glad I did.

I was careful with my hearing but tried not to "overprotect" as I had read about. It just kept getting worse and then my family's voices were even too much for me. I tried super quiet "pink noise therapy" off my phone for a couple days but that seemed like it might have been making me worse so I stopped.

As of 3 weeks ago I started to get small twinges of pain, especially in my right ear. I became even more careful, wearing earplugs driving. I had lunch with a friend in a quiet, although maybe a bit windy, park and then threw a football back and forth while talking and it's been all downhill since then. I basically can only converse in whispers now. I moved home from my apartment and when I drive into the city (with double protection) to see my boyfriend, it's so sad how little we can do together now. His voice is hurting from whispering so much. He's been quite understanding but has had moments of frustration. It's terrible that we're barely even able to talk on the phone now. We've been together over 4 years and we were probably going to get engaged next year. It's heartbreaking but I pretty much told him if I don't get better, I won't resent him if he decides to leave because I love him too much to drag him through this misery with me. He keeps saying I'll get better and we'll get through this but right now I have so much doubt.

As for medical school, becoming a physician has been my dream since I was in grade school. I wanted to be a better doctor than all the terrible ones I had seen treat me or my family. I killed myself in high school and college with academics, sports, extracurriculars to get into med school. I had to take two years off before med school to figure out my migraines after the concussion, and honored every single one of my third year clerkships now in medical school. I was only a year away from my MD, but now it all feels like it was literally for nothing. I should have spent all that time I wasted studying enjoying what I had before this debilitating hyperacusis set in. I could have spent so much more time with my boyfriend who I love so dearly if I hadn't been pouring all of myself into medical training. He was so patient and supportive of me along the way and now I feel like I'm just going to lose him. And I honestly wonder if the stress I was under is what screwed up my health anyway. At this point, I would give up being a doctor in a heartbeat if I could still get married and have a family. I can't even talk to my therapist I started seeing anymore because it hurts to talk. I'm isolated most hours of the day in my room except when I dare venture to see my boyfriend or watch TV on volume 5 with my mom wearing earplugs. And I haven't been able to go to the gym, which I loved before this and was my main stress reducer. Trying to manage some workouts in the basement but lately feeling too down to do much of anything.

Questions:

• Do I need to cut out talking on the phone with my boyfriend? We're semi "long distance" now with commute taking up to 1.5 hours with traffic.
• Do I have any hope of the pain going away? I know I could live with my tinnitus and even much worse tinnitus if the pain would just go away.
• Any supplements/treatments I should be trying right now? Currently I'm taking NAC, ALA, D3, Acetyl-L-Carnitine, Benfotiamine on top of multivitamin. Ginkgo biloba spiked me. I will be starting Tru Niagen (worth a try I guess, Amazon had a sale) and trying to get my hands on Ambroxol. I'm also taking Valerian root, Magnesium, and Inositol at night. I was thinking of trying to get Lion's Mane and then doing the whole Niacin protocol. I do have access to Psilocybin but I've heard mixed things.

Sorry for vomiting out all my emotions on this super long post. I feel so terribly alone and no one I know seems to understand why I feel like my life as I know it is over. They try but I feel like it's impossible to understand until it happens to you. I've thought so much about how I wished I could have gotten a disease where you either beat it or you die. The only thing that keeps me hanging on is my faith in God. He's carried me through so much in the past and I've always found meaning and learning in my past sufferings but this one really tops it all.

Thinking of all of you and especially those of you that I know have this worse than me.

P.S. If it matters at all, my migraine meds which I take daily are Keppra, Nortriptyline and Phenobarbital. I have been on them for 2 and a half years and they never seemed to change my tinnitus. I'm wondering about upping Keppra and/or decreasing Nortriptyline or Phenobarbital but also afraid to make any changes right now for fear of worsening hyperacusis. All these meds are low dose. I have never been able to tolerate higher doses of anything because I get side effects so easily.

 

[Aaron91]

Play with fire, get burned. Same old story for so many of us here. Welcome to the club none of us asked to join.

I'll try to address the rest of your post some other time, but regarding supplements, here's what worked and didn't work for me:

High dose CoQ10 - 800mg or more. As you already know, this helps with ATP synthesis, and we know from Arnaud Norena's body of work that the ATP energy crisis plays a big role in the chronic middle ear inflammation that sets in.

Ambroxol: Ambroxol works as a middle ear surfuctant, so it helps to drain middle ear fluid inflammatory molecules. It's also a potent NaV 1.7 blocker. It helped me tremendously with the facial pain that set in from hyperacusis.

Ionic liquid magnesium - not all magnesium is equal, this is the kind you need.

I'm also inclined to say that ingesting lots of ginger daily for a prolonged period (2 or more weeks) also helped.

NAC, ALA, Ginkgo biloba and Tru Niagen did not help. I also tried the Paul Stammets Stack you are refererring to (Niacin, Lion's Mane and Psilocybin). It did not work for me.

Protect your ears and keep your stress levels low (as much as you can). I think it's difficult for the body to heal when it's under stress. Regarding long distance with your boyfriend, I would often speak to people through a combination of a muted video call on one device while typing to them through web Whatsapp on another device. You can probably also just use Google Meets and mute the microphones. It's not ideal, but it's something.

This can and does get better, but in some cases it can take years. I'm convinced the steps one takes in the initial weeks after injury are critical towards long-term prognosis. Sadly, I learned this the hard way.

 

[yeezysqueezy]

@Aaron91, thank you so much for your reply. I will add these in. For the Ambroxol, what sources do you recommend? I'm in the US and I ordered it from https://findambroxol.com/ a week ago but then received notice that it is out of stock and won't have more information till Monday.

I forgot to mention I have also been taking a Turmeric supplement that also has some Ginger in it (50 mg), but I think I'll get a dedicated Ginger supplement to increase that.

Great idea with the Google Meets!

I need to spend more time reading Arnaud Norena's work. I just found a paper by him the other day.

Thank you again. So sorry you're dealing with this too. I hope that you've been seeing some improvements over time.

 

[TheFriendlyGhost]

I'm in a similar situation as you. I suffer with you. Hoping for a miracle.

 

[MindOverMatter]

• Do I need to cut out talking on the phone with my boyfriend? We're semi "long distance" now with commute taking up to 1.5 hours with traffic.

• Do I have any hope of the pain going away? I know I could live with my tinnitus and even much worse tinnitus if the pain would just go away.

• Any supplements/treatments I should be trying right now?

First off, sorry to hear about your struggles. As said in this thread, none of us asked to join and post anything on this forum. BUT, life doesn't always turn the way we would like it to, and no one said it was going to be easy. This situation is nothing but easy, and it is debilitating where you are now. Both physically and mentally.

However, I agree with @Aaron91. It can and does get better, for most people, with time. Keep that in your mind, and repeat it to yourself as a manifestation. That's what I did 3+ years back, when I had the same symptoms as you describe. I felt crippled, and devastated at times. With time, with counseling, and with slowly building tolerance to sound again (when you are ready), there is a great chance you will get your life back.

It comes with a price though, and some alterations to the "previous" life you had. Like listening to loud EMD music and such. Events and so forth. That's nothing I would recommend for the future, even with earplugs. But with time you will realize that this is not the end of this life. Things change, you change, and with time this can and will get better.

You probably have to put a lot of stuff on hold, for now, but don't give up on your dreams in the state you are now. "Today" is not "tomorrow".

@Aaron91 gave you a lot of good feedback on the supplements. You could also consider a B-vitamin complex + have your D3-levels checked. If you are annoyed with TTTS and fullness, I would try out to supplement with lemon bioflavonoids (a potent antioxidant), 1000 mg a day for a minimum of 3 weeks.

 

[Aaron91]

@Aaron91, thank you so much for your reply. I will add these in. For the Ambroxol, what sources do you recommend? I'm in the US and I ordered it from https://findambroxol.com/ a week ago but then received notice that it is out of stock and won't have more information till Monday.

I forgot to mention I have also been taking a Turmeric supplement that also has some Ginger in it (50 mg), but I think I'll get a dedicated Ginger supplement to increase that.

Great idea with the Google Meets!

I need to spend more time reading Arnaud Norena's work. I just found a paper by him the other day.

Thank you again. So sorry you're dealing with this too. I hope that you've been seeing some improvements over time.

I'm in Europe, so it's OTC here. I know people in America have a harder time getting access. I've previously bought from this place but they seem to be out of stock as well.

Regarding ginger, don't bother with supplements. There are quality control issues and in any case you need high quantities. The best and cheapest way to do it is to just buy raw ginger, grate it and make tea from it - you can add lemon and honey to make it into a palatable comfort drink. I recommend reading all of Norena's papers.

Edit: make sure to try high dose CoQ10. I know a couple of other people who also saw benefit.

 

[yeezysqueezy]

I'm in a similar situation as you. I suffer with you. Hoping for a miracle.

@TheFriendlyGhost, I'm so sorry to hear that. I am hoping for a miracle as well! Thank you for your message. Hopefully we'll both see slow improvements over the coming weeks/months.

First off, sorry to hear about your struggles. As said in this thread, none of us asked to join and post anything on this forum. BUT, life doesn't always turn the way we would like it to, and no one said it was going to be easy. This situation is nothing but easy, and it is debilitating where you are now. Both physically and mentally.

However, I agree with @Aaron91. It can and does get better, for most people, with time. Keep that in your mind, and repeat it to yourself as a manifestation. That's what I did 3+ years back, when I had the same symptoms as you describe. I felt crippled, and devastated at times. With time, with counseling, and with slowly building tolerance to sound again (when you are ready), there is a great chance you will get your life back.

It comes with a price though, and some alterations to the "previous" life you had. Like listening to loud EMD music and such. Events and so forth. That's nothing I would recommend for the future, even with earplugs. But with time you will realize that this is not the end of this life. Things change, you change, and with time this can and will get better.

You probably have to put a lot of stuff on hold, for now, but don't give up on your dreams in the state you are now. "Today" is not "tomorrow".

@Aaron91 gave you a lot of good feedback on the supplements. You could also consider a B-vitamin complex + have your D3-levels checked. If you are annoyed with TTTS and fullness, I would try out to supplement with lemon bioflavonoids (a potent antioxidant), 1000 mg a day for a minimum of 3 weeks.

Hi @MindOverMatter. Thanks so much for your kind words. As I've been browsing Tinnitus Talk, I've seen some of your quotes and other optimistic messages and they've helped to keep my spirits up. I try to keep reminding myself that one year from now things may look very different.

And I will definitely never be listening to any loud EDM again. I gave that up immediately after my first worsening in 2021. I have never listened to music with earbuds/headphones since then either. I would be ecstatic if I could just go to a normal restaurant with hearing protection eventually. I would be fine giving up every other loud thing at this point.

What was the progression of your pain hyperacusis? How long did it take for you to be able to talk normally (if you are able)? Not being able to talk to people normally has become the hardest thing right now. I feel like I'm in solitary confinement. I have so far managed to do some whispering in person but even then I wonder if I'm hindering healing.

In terms of supplements, I had my D checked in January and it was borderline low, so I've been taking 5,000IU daily. I've also been taking B1 (benfotiamine) but might switch to a B complex. I just ordered lemon bioflavonoids on Amazon! Thank you for the recommendations.

I'm in Europe, so it's OTC here. I know people in America have a harder time getting access. I've previously bought from this place but they seem to be out of stock as well.

Regarding ginger, don't bother with supplements. There are quality control issues and in any case you need high quantities. The best and cheapest way to do it is to just buy raw ginger, grate it and make tea from it - you can add lemon and honey to make it into a palatable comfort drink. I recommend reading all of Norena's papers.

Edit: make sure to try high dose CoQ10. I know a couple of other people who also saw benefit.

Thanks, I'll keep an eye on that website too. And I always make honey, lemon, & ginger tea when I'm really sick and have always enjoyed it so I'll do that.

I just bought some CoQ10 off Amazon as well. My dad has some he's sharing with me for now but it's only 100mg each so I had to take a whole handful! Ordered some ionic magnesium as well.

I also asked this of @MindOverMatter, but are you able to talk with a normal voice now? That's the hardest thing for me right now. I feel tremendously isolated. In person, I'll whisper but even then I wonder if I'm doing some damage. So hard to tell because my pain is often delayed.

 

[yeezysqueezy]

Question for anyone who might have thoughts on this, should I be pursuing intratympanic steroid injections more aggressively with other doctors? I've had two deny me now. I know theoretically there's always a risk of it causing worsening, but I would be willing to try it I guess if there was a good chance of it helping.

Also, is hyperbaric oxygen therapy worth a shot? It's super expensive but if it works I'm willing to pay.

I'm getting a lot of anxiety about some of these treatments because I know there's a limited "window of opportunity."

 

[Aaron91]

Question for anyone who might have thoughts on this, should I be pursuing intratympanic steroid injections more aggressively with other doctors? I've had two deny me now. I know theoretically there's always a risk of it causing worsening, but I would be willing to try it I guess if there was a good chance of it helping.

Also, is hyperbaric oxygen therapy worth a shot? It's super expensive but if it works I'm willing to pay.

I'm getting a lot of anxiety about some of these treatments because I know there's a limited "window of opportunity."

I would not go anywhere near HBO therapy. A lot of people have worsened and without surprise due to middle ear pressurisation issues. Additionally, free radicals from too much oxygen can potentially cause more damage. It's just too big of a risk. I'm not familiar with many people here who have tried intratympanic steroids for hyperacusis, only tinnitus.

To answer your question on your previous post, my right ear had recovered about 90% and my left had recovered some 70% after about 2.5 years. My life resumed pretty much to normal and I was able to go to restaurants and bars (not clubs) without earplugs. I wasn't well enough to walk into a club or concert, but I was perfectly ok with that sacrifice, because I was now able to watch TV, YouTube and go out without problems. Unfortunately, I recently had a setback in my left ear caused by back to back colds/infections and now I'm back on the Ambroxol/CoQ10/Ginger protocol. We shall how it goes, I'm not back to square 1 by any means but I think I've lost about a year's progress, although I'm quietly confident it won't take another year to get back to where I was. Perhaps a month or two.

 

[yeezysqueezy]

I would not go anywhere near HBO therapy. A lot of people have worsened and without surprise due to middle ear pressurisation issues. Additionally, free radicals from too much oxygen can potentially cause more damage. It's just too big of a risk. I'm not familiar with many people here who have tried intratympanic steroids for hyperacusis, only tinnitus.

To answer your question on your previous post, my right ear had recovered about 90% and my left had recovered some 70% after about 2.5 years. My life resumed pretty much to normal and I was able to go to restaurants and bars (not clubs) without earplugs. I wasn't well enough to walk into a club or concert, but I was perfectly ok with that sacrifice, because I was now able to watch TV, YouTube and go out without problems. Unfortunately, I recently had a setback in my left ear caused by back to back colds/infections and now I'm back on the Ambroxol/CoQ10/Ginger protocol. We shall how it goes, I'm not back to square 1 by any means but I think I've lost about a year's progress, although I'm quietly confident it won't take another year to get back to where I was. Perhaps a month or two.

Ok, that makes a lot of sense about the HBOT and free radicals/pressure issues. Thanks for the heads up.

I'm glad to hear how much improvement you've had since onset but sorry to hear about the recent setback

 

[TheFriendlyGhost]

I'm also inclined to say that ingesting lots of ginger daily for a prolonged period (2 or more weeks) also helped.

How much ginger are we talking about?

 

[MindOverMatter]

@yeezysqueezy, my hyperacusis is related to loudness/frequencies and reactiveness - which I personally believe is a subset of hyperacusis.

I didn't and don't have pain hyperacusis with actual physical pain like stabbing pain and such. So my own voice never bothered, but others' did. However, I don't react to this any longer unless it's through digital audio which I can find annoying from time to time. Dependent upon the speakers and quality of sound.

 

[momus]

I eat a lot of ginger myself, it's hard to quantify it though. Just cut it up for salads and other dishes, it's a very good antimicrobial and noninflammatory food. What I use is considerably more than would be for just a spice it up thing. It's great in tea too, but I seldom drink that unless it's chamomile and lavender to help get to sleep at night.

Garlic and onion are also noninflammatory.

I don't know if all that helps my tinnitus or not, but it can't hurt.

 

[TheFriendlyGhost]

@yeezysqueezy, how are you doing? Any improvements with the supplements you've been taking?

 

[yeezysqueezy]

@yeezysqueezy, my hyperacusis is related to loudness/frequencies and reactiveness - which I personally believe is a subset of hyperacusis.

I didn't and don't have pain hyperacusis with actual physical pain like stabbing pain and such. So my own voice never bothered, but others' did. However, I don't react to this any longer unless it's through digital audio which I can find annoying from time to time. Dependent upon the speakers and quality of sound.

@MindOverMatter, I find digital audio is one of the hardest things for me to tolerate too.

I eat a lot of ginger myself, it's hard to quantify it though. Just cut it up for salads and other dishes, it's a very good antimicrobial and noninflammatory food. What I use is considerably more than would be for just a spice it up thing. It's great in tea too, but I seldom drink that unless it's chamomile and lavender to help get to sleep at night.

Garlic and onion are also noninflammatory.

I don't know if all that helps my tinnitus or not, but it can't hurt.

@momus, thanks for the recommendation.

@yeezysqueezy, how are you doing? Any improvements with the supplements you've been taking?

@TheFriendlyGhost, thanks for checking in. I've had a little dilemma because I started so many things at once and something seemed to bring back my morse code tone in my right (bad) ear which had gone away so I am starting over and adding things slowly one by one but now I have another new tone in the bad ear along with intermittent sensations of pressure so maybe it wasn't any of the supplements that spiked me and it was just inevitable.

In terms of pain, I feel like it's stabilized/not getting worse, but I've been very careful with noise exposure. I worry that my sound tolerance is continuing to go down but at least not as quickly as before. I have been struggling a lot mentally with the isolation honestly. I am trying to stay positive and keep a somewhat happy face around my family and partner. Everyone is worried about me and feels helpless because there's not really much they can do. If I ever do get better, it's feeling like it's going to take many, many months or even years. People keep asking me if I'm getting better and I never know what to say. I think it's too soon to tell. How have you been doing?

 

[TheFriendlyGhost]

@TheFriendlyGhost, thanks for checking in. I've had a little dilemma because I started so many things at once and something seemed to bring back my morse code tone in my right (bad) ear which had gone away so I am starting over and adding things slowly one by one but now I have another new tone in the bad ear along with intermittent sensations of pressure so maybe it wasn't any of the supplements that spiked me and it was just inevitable.

In terms of pain, I feel like it's stabilized/not getting worse, but I've been very careful with noise exposure. I worry that my sound tolerance is continuing to go down but at least not as quickly as before. I have been struggling a lot mentally with the isolation honestly. I am trying to stay positive and keep a somewhat happy face around my family and partner. Everyone is worried about me and feels helpless because there's not really much they can do. If I ever do get better, it's feeling like it's going to take many, many months or even years. People keep asking me if I'm getting better and I never know what to say. I think it's too soon to tell. How have you been doing?

So sorry to hear about the morse code. I hope it gets better with time. I've also got a tone back that I haven't had for a long time.

Sounds like a good idea to add one thing at a time. Then you hopefully know what works and what doesn't. Glad to hear the pain hasn't gotten worse for you.

Sound tolerance (loudness hyperacusis) probably gets worse when you protect your hearing as much as we do. But rather that than worsening noxacusis.

I feel exactly the same as you. I try to take one day at a time. It's a difficult situation for relatives because they feel helpless. Everyone says there must be something that can be done, but unfortunately there probably isn't. One can only hope that things will get better with time.

I had a setback a few days ago after a rather loud noise at home. Felt like I lost all the progress I had made. The pain varies a lot from day to day, but I try to stay positive as much as possible and not think too much about the future.

Tomorrow I will see an ENT and audiologist. I hope things don't get worse and that they have something positive to say. But my expectations are low.

We're in this together.

 

[Esther R]

My hyperacusis/pain is almost certainly a result of 10+ years of concerts/festivals and artificial audio is probably the most aggravating to my ears than the majority of noises. I have not been able to listen to music at all in over a year and it is devastating. I had to move back in with my parents from living in NYC because the noise pollution was overwhelming, and the isolation/loneliness have been one of the most difficult adjustments for me. I totally get it and empathize with feeling like your life is over.

I recommend using Zoom or Google Meet to talk to your BF. I work remotely and am able to use auto captions/transcription for my multiple daily work calls. I just have my volume muted on my phone & laptop. Also it can be helpful to get a Google Chrome plugin that automatically adds captions whenever there's video on your browser.

 

[yeezysqueezy]

So sorry to hear about the morse code. I hope it gets better with time. I've also got a tone back that I haven't had for a long time.

Sounds like a good idea to add one thing at a time. Then you hopefully know what works and what doesn't. Glad to hear the pain hasn't gotten worse for you.

Sound tolerance (loudness hyperacusis) probably gets worse when you protect your hearing as much as we do. But rather that than worsening noxacusis.

I feel exactly the same as you. I try to take one day at a time. It's a difficult situation for relatives because they feel helpless. Everyone says there must be something that can be done, but unfortunately there probably isn't. One can only hope that things will get better with time.

I had a setback a few days ago after a rather loud noise at home. Felt like I lost all the progress I had made. The pain varies a lot from day to day, but I try to stay positive as much as possible and not think too much about the future.

Tomorrow I will see an ENT and audiologist. I hope things don't get worse and that they have something positive to say. But my expectations are low.

We're in this together.

Hi @TheFriendlyGhost. I think I jinxed myself because yesterday and today have been worse pain days with more burning and stabbing in silence but hopefully it will improve in a couple of days. Sometimes I feel like there's no rhyme or reason to the pain. I'm worried because Saturday my family and I are moving all my stuff out of my old apartment in a loud area of the city and I'm terrified of what noises there will be.

I'm sorry to hear about your setback It's so hard to avoid the occasional loud noise even at home.

I read your post on your thread about your ENT visit and I'm sorry they didn't know more about pain hyperacusis. Very frustrating.

I actually went to an ENT today too. I almost chickened out but my mom convinced me to go because he's affiliated with a university center and might know people that know more. Turns out he specializes in nose/sinus stuff (lol) but he was very thorough and understanding. He fully believed my symptoms were real and agreed with listening to my ears in avoiding noises. He even mentioned some things about stapes hypermobility, so I feel like he keeps up to date even in areas outside of his specialty.

He said he doesn't have much experience with hyperacusis but said I should go to one of his colleagues at a different university center. He's a surgeon and I'm not interested in surgery (at least at this point) but I may go see him in case he has any interesting theories. The ENT I saw today said this other guy is very innovative.

My hyperacusis/pain is almost certainly a result of 10+ years of concerts/festivals and artificial audio is probably the most aggravating to my ears than the majority of noises. I have not been able to listen to music at all in over a year and it is devastating. I had to move back in with my parents from living in NYC because the noise pollution was overwhelming, and the isolation/loneliness have been one of the most difficult adjustments for me. I totally get it and empathize with feeling like your life is over.

I recommend using Zoom or Google Meet to talk to your BF. I work remotely and am able to use auto captions/transcription for my multiple daily work calls. I just have my volume muted on my phone & laptop. Also it can be helpful to get a Google Chrome plugin that automatically adds captions whenever there's video on your browser.

Hi @Esther R, thanks for your message. I'm sorry you've been dealing with this for so long I can't imagine living in NYC with pain hyperacusis!

Have you seen any improvements over the past year? Are you able to speak without causing yourself pain on your work calls? I can't even imagine how I will go back to any kind of work if I can't speak normally eventually.

Thank you for the recommendations. I'll have to find that Chrome plugin.

P.S. I love your photo! Is that in Washington?

 

[TheFriendlyGhost]

Hi @TheFriendlyGhost. I think I jinxed myself because yesterday and today have been worse pain days with more burning and stabbing in silence but hopefully it will improve in a couple of days. Sometimes I feel like there's no rhyme or reason to the pain. I'm worried because Saturday my family and I are moving all my stuff out of my old apartment in a loud area of the city and I'm terrified of what noises there will be.

I'm sorry to hear about your setback It's so hard to avoid the occasional loud noise even at home.

I read your post on your thread about your ENT visit and I'm sorry they didn't know more about pain hyperacusis. Very frustrating.

I actually went to an ENT today too. I almost chickened out but my mom convinced me to go because he's affiliated with a university center and might know people that know more. Turns out he specializes in nose/sinus stuff (lol) but he was very thorough and understanding. He fully believed my symptoms were real and agreed with listening to my ears in avoiding noises. He even mentioned some things about stapes hypermobility, so I feel like he keeps up to date even in areas outside of his specialty.

He said he doesn't have much experience with hyperacusis but said I should go to one of his colleagues at a different university center. He's a surgeon and I'm not interested in surgery (at least at this point) but I may go see him in case he has any interesting theories. The ENT I saw today said this other guy is very innovative.

I'm so sorry to hear it's worse again. I think we have to accept that there will be a lot of ups and downs with this condition and some days will mean more pain than others

I would also be worried if I were to move in a loud area. Hopefully, your family can help you with most of the work.

Sounds like your ENT is more understanding of your condition than mine. I understand that my ENT only wants the best for me, but at the same time there is not much knowledge about this condition, so no one can be blamed.

I hope you get some help from the other ENT.

 

[Esther R]

Hi @Esther R, thanks for your message. I'm sorry you've been dealing with this for so long I can't imagine living in NYC with pain hyperacusis!

Have you seen any improvements over the past year? Are you able to speak without causing yourself pain on your work calls? I can't even imagine how I will go back to any kind of work if I can't speak normally eventually.

Thank you for the recommendations. I'll have to find that Chrome plugin.

P.S. I love your photo! Is that in Washington?

Yeah it totally sucked, and it was a difficult decision to move back home, but ultimately necessary. I moved home after 4 months of being homebound with hyperacusis. Can't help but wonder if I would have recovered quicker if I had moved back sooner rather than be constantly anxious and on edge from the street noise and ambulance sirens. I did come back to Brooklyn once afterwards, maybe 3 months later, to move the rest of my stuff back. I went at like 10 am on a Sunday so it was quieter than usual. I saw you mention you're going on a Saturday to move your stuff so I really recommend going as early in the morning as you can to avoid the hustle & bustle. Wear foam earplugs & earmuffs on top. I have Peltor X5A which allegedly have the most protection of other industrial earmuffs. It's like $20-$30 on Amazon Prime. Super convenient to throw on if I'm driving or cooking/doing dishes in the kitchen.

In terms of improvements - I have seen some for sure, though not as much as I was hoping for. My theory is that having years and years of loud music exposure along with massive chronic anxiety issues (past few years) has caused a bunch of damage, and the significant amount of damage might take a long time to undo. It really does differ for everyone though, because people have different factors in what led them to develop hyperacusis. Like I may have gone to more concerts without earplugs than some people, but others may have gone to shooting ranges. Stuff like that.

So back to improvements, for me at least avoiding noise seems to help. I'm still learning how to deal with and protect against noise. This doesn't necessarily mean you have to do the same as I am doing, because I'm basically 95% homebound. Most public places like restaurants and stores have music playing which gives me pain, so I avoid them. I felt better last July/August and was able to spend a couple days/weekends at a friend's apartment. We even went to a brewery with outdoor seating that did not have any music playing. I was able to handle outdoor dining at restaurants that didn't play music as well, and did maybe 2 outings to them. All with foam earplugs in, but still. I've had a couple spikes since that, where the pain/sensitivity is higher. I seem to return to baseline after 2+ weeks or so.

Usually, I'm able to speak on calls unless I'm going through a sensitivity spike. During the most significant spike back in September, I was barely able to speak without pain for like a month. My ears will get kinda fatigued/sore after maybe 30+ minutes of talking if I'm on a zoom call, but it depends.

A couple things that have helped me btw: getting a full night's sleep, drinking less caffeine, taking Magnesium (I think), not eating LOUD crunchy food as much (chips, celery, etc), and honestly - cutting out weed. It's a bummer about not being able to smoke but it started to make my anxiety worse and notice the tinnitus/sensitivity more so I just avoid it for the foreseeable future.

Also, thank you! It's actually from my visit to the Grand Tetons, specifically the Jenny Lake hike. I took a social-distanced road trip with a friend in summer 2020 and we spent a couple days at Yellowstone & the Tetons. I'm really hoping that my hyperacusis keeps improving & that I will be able to travel again.The PNW is at the top of my list, would love to get out to Hoh rainforest, Rainier, Glacier, etc.

Just saw your picture too! Where was it taken?

 

[yeezysqueezy]

Yeah it totally sucked, and it was a difficult decision to move back home, but ultimately necessary. I moved home after 4 months of being homebound with hyperacusis. Can't help but wonder if I would have recovered quicker if I had moved back sooner rather than be constantly anxious and on edge from the street noise and ambulance sirens. I did come back to Brooklyn once afterwards, maybe 3 months later, to move the rest of my stuff back. I went at like 10 am on a Sunday so it was quieter than usual. I saw you mention you're going on a Saturday to move your stuff so I really recommend going as early in the morning as you can to avoid the hustle & bustle. Wear foam earplugs & earmuffs on top. I have Peltor X5A which allegedly have the most protection of other industrial earmuffs. It's like $20-$30 on Amazon Prime. Super convenient to throw on if I'm driving or cooking/doing dishes in the kitchen.

In terms of improvements - I have seen some for sure, though not as much as I was hoping for. My theory is that having years and years of loud music exposure along with massive chronic anxiety issues (past few years) has caused a bunch of damage, and the significant amount of damage might take a long time to undo. It really does differ for everyone though, because people have different factors in what led them to develop hyperacusis. Like I may have gone to more concerts without earplugs than some people, but others may have gone to shooting ranges. Stuff like that.

So back to improvements, for me at least avoiding noise seems to help. I'm still learning how to deal with and protect against noise. This doesn't necessarily mean you have to do the same as I am doing, because I'm basically 95% homebound. Most public places like restaurants and stores have music playing which gives me pain, so I avoid them. I felt better last July/August and was able to spend a couple days/weekends at a friend's apartment. We even went to a brewery with outdoor seating that did not have any music playing. I was able to handle outdoor dining at restaurants that didn't play music as well, and did maybe 2 outings to them. All with foam earplugs in, but still. I've had a couple spikes since that, where the pain/sensitivity is higher. I seem to return to baseline after 2+ weeks or so.

Usually, I'm able to speak on calls unless I'm going through a sensitivity spike. During the most significant spike back in September, I was barely able to speak without pain for like a month. My ears will get kinda fatigued/sore after maybe 30+ minutes of talking if I'm on a zoom call, but it depends.

A couple things that have helped me btw: getting a full night's sleep, drinking less caffeine, taking Magnesium (I think), not eating LOUD crunchy food as much (chips, celery, etc), and honestly - cutting out weed. It's a bummer about not being able to smoke but it started to make my anxiety worse and notice the tinnitus/sensitivity more so I just avoid it for the foreseeable future.

Also, thank you! It's actually from my visit to the Grand Tetons, specifically the Jenny Lake hike. I took a social-distanced road trip with a friend in summer 2020 and we spent a couple days at Yellowstone & the Tetons. I'm really hoping that my hyperacusis keeps improving & that I will be able to travel again.The PNW is at the top of my list, would love to get out to Hoh rainforest, Rainier, Glacier, etc.

Just saw your picture too! Where was it taken?

Hi Esther! So sorry about my huge delay in responding. I saw your message right before moving and then completely forgot to respond. The move ended up going better than expected. I went in with hearing protection and got everything organized and in boxes ahead of time and then my dad, brother, boyfriend pretty much just did all the transporting out to the car so I could stay inside. I honestly think wearing earplugs (+Peltors) for so long caused me more pain than the actual noise. Everyone was as quiet as possible moving things.

I'm glad you've had some improvements but also understand it not being as much as you'd like. It's great to hear that you're able to tolerate your voice most of the time and eat in quiet outdoor settings!

That really is a bummer that you've noticed weed makes things worse for you. I've been going back and forth on this because I hear similar things from other people but I feel like it's one of my only escapes sometimes and helps me sleep.

Wow, the Grand Tetons! Been on my bucket list for a long time! And I just looked up Hoh rainforest and it looks beautiful. My photo was from Avalanche Lake at Glacier NP. I would give anything to just be able to travel to places and hike even if I had to do it quietly by myself. Last year my boyfriend and I went to Joshua Tree for a week and it was soooo quiet and I keep wishing I could move there (or somewhere similar) to recover from this. So many loud birds, lawn mowers, and planes overhead where I live. Ironically, back then I was kind of annoyed with how quiet it was there because I could hear my tinnitus so much more but now the silence there sounds like bliss!

Hope you are doing as well as possible! I just got some Ambroxol in the mail and hoping it helps a bit over time with the pain.

 

[Mike42]

My tinnitus seems to have become reactive, high-pitched, and pulsatile in the 12000 Hz range a few weeks ago. I have had tinnitus from 2018 but I habituated to it and it sounded like a roar/static that you can hear when you plug your ears, or when in a very quite place. The high-pitched pulsatile tinnitus though reacts to: fans, PC fans, wind, water from shower. Sometimes I get minor stabbing pain in the left ear but not often, and my ears get that clogged fullness feeling, but I don't have any muffled hearing, or hearing loss.

I had an MRV of my head and the results came back with narrowing of the left transverse sigmoid sinus vein, and some narrowing of the right distal vein due to large aracnoid granulation.

Do I have hyperacusis/reactive tinnitus? Or is this just a spike? This all started a few weeks ago after going out to eat at a restaurant. I had a fleeting tinnitus episode and of course threw myself in a panic.

 

[yeezysqueezy]

My tinnitus seems to have become reactive, high-pitched, and pulsatile in the 12000 Hz range a few weeks ago. I have had tinnitus from 2018 but I habituated to it and it sounded like a roar/static that you can hear when you plug your ears, or when in a very quite place. The high-pitched pulsatile tinnitus though reacts to: fans, PC fans, wind, water from shower. Sometimes I get minor stabbing pain in the left ear but not often, and my ears get that clogged fullness feeling, but I don't have any muffled hearing, or hearing loss.

I had an MRV of my head and the results came back with narrowing of the left transverse sigmoid sinus vein, and some narrowing of the right distal vein due to large aracnoid granulation.

Do I have hyperacusis/reactive tinnitus? Or is this just a spike? This all started a few weeks ago after going out to eat at a restaurant. I had a fleeting tinnitus episode and of course threw myself in a panic.

Hi @Mike42. It sounds like you have multiple variables going on. I believe a narrowed sigmoid sinus can contribute to pulsatile tinnitus but I would ask your neurologist about the implications of the results. Sometimes the radiologist writes things on the report but the doctor that knows you has to interpret the findings in light of your specific situation.

It sounds like you might also have some reactive tinnitus (some people here will argue about reactive tinnitus being a subtype of hyperacusis or not, I don't really care). I would protect from loud noises (anything over 80 dB or so) and anything that causes you ear pain for now. There's mixed opinions on this but giving yourselves a little more quiet time than usual might help but I don't see any reason to go crazy on ear protection for you right now. Hopefully it's just a spike but I would definitely follow up with your doctor about the MRV.

Sorry you're dealing with these symptoms!

 

[gameover]

I posted on your profile... I am so sorry. You have it worse than me (pain), yet you seem to be stronger and more resolute than I am. A 45+ years old man. Shame on me. Hope you will come out of this well.

Joshua Tree. Loved it, along with Mojave. We visited twice. Many years ago in 2007, and I think in 2019 again. We love the desert. Not sure I will be able to see it ever again.