Had a Setback After Being Exposed to Music at a Record Store and I'm Starting to Get Nervous

I’m at a little over the three month mark and I’ve deteriorated to a state I’ve never reached before. I’m only able to leave the house wearing hearing protection now. I pretty much only take my kids to school and go to the store when necessary.

I’m getting pain from the noise of my stand alone heater running, vent airflow etc. This has pretty much driven me to protecting in my house almost constantly.

Literally less than 4 months ago I was out in public daily without hearing protection and doing quite well. I didn’t consider myself a success story, but I did share my progress on the board to give others hope. Now I’m not seeing a future like this and waiting years to see if I get minor improvements is not something I think I can stomach.

This single noise insult that seemed non-threatening sent me on a spiral. Since then I’ve had repeated minor setbacks. I attribute this in some ways to not knowing where my new level of tolerance was because things escalated so quickly.

Previously, I was listening to music daily in the 50ish dB range, able to watch TV and play video games on low volume. I could tolerate the sounds of the suburbs well enough to not need hearing protection. Obviously I should have been wearing it anyway.

I guess I’m now just serving as another testament to the volatile nature of this debilitating condition that no one in my life takes seriously. Honestly, if it wasn’t for the fear I have of leaving my children, of the unknown and of not being successful I would commit suicide right now.

 

So sorry to hear this man. I think you might need to start wearing double protection whenever possible so your auditory system has time to calm down. When my setback got bad I was wearing foam earplugs the entire day unless I was sleeping or in a guaranteed quiet place.

Definitely wear foam earplugs placed correctly whenever you leave the house. And buy a pair of musician’s earplugs so that you can transition down to those in quieter moments. I just wouldn’t be totally unprotected at all right now unless I’m sleeping. And you might even want to sleep with Calmer nighttime earplugs at night too.

I’ve seen you post in the ginger thread, have you tried that yet? It really helps me with the burning.

Also I’ve started taking 5-10 minutes a day to sit and visualize myself being completely pain free and listening to rock music without any issues. It’s really hard to do, even in my imagination I’m still afraid of certain sounds and experience the imagined sounds as way too loud, but I think I’m improving. @Marin did something like this (among diet and supplements) and she has dramatically improved from a much worse state than you. You should check her thread out on Tinnitus Talk.

I had a significant setback in November and I am definitely better right now than I was then. The stuff I’ve done is basically protect 75% of the time, listen to pink noise every night (wouldn’t recommend this for you now), take NAC 3-4 times a week, think positively, avoid caffeine and alcohol, eat tons of Ginger, avoid music and sounds from devices like phones and computers.

In general I err on the side of protection at all times. I don’t risk exposure unless it’s totally controlled. I wouldn’t go into any store at all unless it’s absolutely necessary. These little setbacks you have can add up quickly. I think if you can avoid those stacking those setbacks up you will start to improve. I know it’s hard when you have kids and work to do, but I think my improvement comes from simply not being blasted at all for months, and resting my ears when they get fatigued.

Remember that almost all hyperacusis can improve, even some horrific cases like Marin’s. I always, always, always improve over time even after repeated setbacks bring me back down.

 

I only got the tea thus far. I’ve drank 3 cups of it in the past two days. I haven’t noticed any improvement in pain. My face muscles did feel more relaxed after the first cup.

I take a boatload of supplements right now. I’m taking probably 3/4000 mg of Fish oil daily, 2000-3000 mg of Turmeric, Tru Niagen, low doses of Melatonin even in the day since it’s otoprotective, NAC periodically, Astaxanthin periodically as it spikes my tinnitus and I’m drinking Turmeric and now the Ginger tea.

I’m working on the low histamine diet and intermittent fasting also. I’m not all the way there. I work out daily too.

Thanks for the recommendations and kind words. I really appreciate it.

 

I would add Magnesium and Potassium citrate to the list.

 

Thanks, I can’t take Magnesium supplements for some reason. They actually make my hyperacusis sensitivity way worse. All different forms I’ve tried have the same result.

I’ll look into the Potassium Citrate.

 

I don't believe the incidents you describe were enough to cause permanent damage. My own experience is that the worsenings from minor, temporary injuries can be aggravated by stress, depression etc. If you keep protecting your ears and wait, getting back to where you were 4 months ago doesn't sound beyond the realm of possiblity. (Though I don't think you should walk around without hearing protection ever again.)

 

You may be right. I could get back to that point. I’m being pretty negative in a way, but also honest.

It took almost two years to get to that point. It took 15 minutes to get worse than I’ve ever been at a seemingly safe level of sound. If it takes two years to get back there I don’t think I want to do it to be honest. And even with protection what will cause the next monumental setback? I’m just tired. You’ve been at it much longer than me so I know I’m not telling you anything you don’t already know.

I’ve never had a setback last over 3 months. And at a level where I’m worse than I was as far as sound sensitivity I don’t consider that a setback, I do consider it a worsening.

Thank you for your encouraging words nevertheless.

 

I am encouraged by the statement in your last paragraph. I have had loudness hyperacusis for sixteen (16) months now. The lack of improvement is very frustrating but I have read several postings of people experiencing significant improvement after two to four years. It is hard to imagine significant improvement if I have sustained significant damage to my auditory system. I played live music without protection for decades and listened to it in my vehicle and with earbuds at too loud a volume In the absence of conventional treatment, it is hard to imagine improvement but perhaps the brain will finally adjust and turn the volume switch down.

 

Sad but true words, I feel the same way.

 

I may have been at it longer than you, but my life situation makes tinnitus easier to endure. No kids, only work part time, and life-long meditator. Unless my tinnitus gets a lot worse due to some accident, I get to recover.

Your problem seems to be that you don't get to recover at all. This would probably have to change for you to see any meaning in your own struggle.

 

I'm in the exact same boat. I developed mild loudness hyperacusis in 2017, it went away, came back with a vengeance as moderate loudness hyperacusis in 2020. Since then it's been a balancing act of isolating and keeping it from getting worse, slowly working up to louder sounds, feeling pretty much normal, and then getting a huge setback.

A couple of days ago, a friend's smoke alarm went off (roughly 110 dB), and the same thing happened a week prior. My ears are *fucked.* Truly fucked. I've been in the realm of "mild pain hyperacusis," as opposed to "loudness," for a while now, but after the smoke alarms I'm hitting new lows I didn't think were possible, and consider myself to be a moderate or even severe form of pain hyperacusis. It is truly intolerable, and the thought of working for years, isolating, protecting, going through the whole thing again, just to have it come crashing down due to a barking dog or a smoke alarm or a truck's breaks...and that's after seeing what is left of my social life continue to crumble into true, abject isolation...

No, it's just not worth it. I really, really think I'd rather just die. I've lost my career as a musician, I've lost my social life, and now I've lost my ability to live pain free. If this doesn't improve, I'll try the Silverstein surgery, and if that doesn't work, I'm out.

 

@rewgs, unfortunately this is how it is. Working for years to protect ourselves and then one single event can put us back into the prison.

 

Yup. I’ve managed for years to avoid a downturn this bad, reading about those who wear ear defenders all day and never leave their house. As real as the threat was to me, I never actually thought I myself would get this bad.

In a way I almost want this to become more common. Not because I wish to inflict this sort of suffering on anyone, not even my worst enemy, but because it will only ever properly get attention and funding if a large amount of people are hit by it. But as it is there’s probably, what, 2,000 people affected worldwide?

In any case, whatever the number is, it’s just vanishingly small.

I’m finding myself reflecting on life lately. Memories playing sports, practicing guitar for hours a day, playing in bands, going to music school, recording orchestras, hanging out with dogs, going to parties and events and loud restaurants... it all just seemed like the mundane material that made up my life, my identity. And now it’s all gone. It feels like another life or like a very pleasant dream. I never knew it could go away.

Mind you I also developed a couple dozen food allergies this year so even if restaurants were quiet enough for me to go to, I couldn’t eat at them.

I’m just blown away. In shock really. One smoke alarm and my life is effectively over, and that’s after years of struggling to keep it from happening. Happened anyways in the most unexpected way, like Brian with his car accident and airbags going off.

I just don’t know what to do. If anything. Is this it, quietly living out my days with earmuffs on, tip toeing around myself?

 

Man, I understand your pain because this is how I also feel (and many like us). The coping and the mourning of our past lives are the hardest part. This abomination takes the best from us and makes us feel isolated. And isolation kills our mental health. I would do anything to be able to travel in order to heal my mind and relax myself.

I have many other chronic problems (severe eye syndrome) and I cannot read books and watch TV more than 1 hour/day. In the past I listened to audio books but I cannot do this either, now. So I am practically doing nothing at home, I am glad I can work (software developer), although Zoom meetings are quite a challenge.

Unfortunately I know so many people who were good for years and then they got a bad setback for no apparent reason.

The fear that every single event can make me worse it's horrifying. A dental drill, a car horn, an accident which needs an ambulance... I try not to think about it, because it won't help.

Btw, did you try any pills? For many of us Duloxetine helps.

 

Interesting! I haven't tried that. I recently went on Lexapro after hemming and hawing for years, and besides a month of glory, it's been pretty useless. Maybe I could kill two birds with one stone and switch to Duloxetine.

 

Maybe give it a try, I know at least 2 people who have taken it for a year and feel better in terms of LDLs and pain. Myself included, although I took it for a week.

Minimum dose is 60 mg/day but I take 30 mg because of side effects. Maybe I will try to get to 60 mg. Usually it starts working after 2 weeks but for me it works faster.

 

I would love to try this if it is helping you, but serotonergic drugs spike my tinnitus to insane levels. When I first got tinnitus, the doctors put me on various meds over the course of about two weeks and my 7/10 tinnitus at onset went to a 10/10.

What would be the mechanism behind it raising LDLs? Getting out of 24/7 protection might make it bearable even with a tinnitus increase. I don’t know though.

Have you tried any other meds?

 

Luckily for me (if I may say so), I can tolerate my tinnitus. It's moderate, it spikes only when I move my head or if there is a loud noise.

I tried Clonazepam (helped in the first weeks), Carbamazepine (took it only 1 week, no results), Lyrica (2 weeks, stomach pain), Ambroxol (3 days, only stomach pain), Duloxetine (1 week, I remember that it helped) and some custom pain cocktail.

Please note that some of them need to be taken at least 2-3 weeks, but you should talk to your doctor first, of course.

 

How are you doing after your smoke alarm exposure?

 

So I was searching about antidepressants today and I stumbled upon a post about a user (@musicblue) who took Nortriptyline and experienced positive results pertaining to ear pain/burning.

Thought I’d bring this to your attention if you guys haven’t seen this yet. Tricyclic antidepressants and its usage for treating neuropathic pain may be an avenue worth exploring at some point. I’m not sure how much these drugs play around with serotonin compare to something like SSRIs.

Link to thread

 

Yes, I know 2 people who take Amitriptyline or Nortriptyline (similar) for burning pain for at least 1 year and it works. Not for pain from sounds, but for pain in silence. I have it on my prescription, I have to try it.

Do you know what's the dosage of @musicblue?

 

Started at 20mg week 1.

Then increased to 30 mg by week 2.

The poster later indicates they will go up to 40 mg and 50 mg soon after. I’m thinking they eventually stayed on 50 mg.

 

How are you now?

 

Not well. Severe noxacusis, homebound. Struggling to function.

 

Hey @GoatSheep, I hope you're doing ok these days.

 

Thank you for the well wishes. Unfortunately, I am worse than ever. I have lost everything. I had to leave my residence and move in with my father six hours away from my children. Homebound even more so than before. I took my kids to school and picked up groceries before. I don’t leave home period now. My sensitivity is worse and my pain is worse. I can’t work. I have no meaning without being able to be with my children and provide for them. This condition has destroyed me. It all began with a totally unexpected setback...

 

Really sorry to hear that man... I hope you manage to hang in there and bounce back. The only constant in life is change. Sending good vibes your way.

 

Try Clomipramine and mindfulness meditation. Buddhist meditation specifically.

Google Dr. Joe Dispenza.