Noxacusis Questions for Moderate to Severe Sufferers

Over the past 3 or so months I’ve gone downhill really bad. Previously, I would say my noxacusis was mild, which I still found debilitating to a degree.

I’m now having pain in near silence at night and basically unable to sleep without hearing protection. I tried last night and woke up after less than 2 hours with pain building up. The pain is not bad yet, but I figure if I ignore it at this level and try to do without protection I will continue to get worse.

I’m extremely worried at this point as I have obligations that being homebound interfere with. I have a special needs son who does physical therapy and I normally have to take him in for his appointments. Obviously telehealth is no better as I cannot use a phone. He also has pelvic floor therapy he was just getting ready to start. His mother will be furious that I can’t take him to these as her work schedule conflicts with the appointments and it will cause a huge problem with our joint custody arrangement.

Basically curious how people are surviving at this level. Do you still work? Do you live independently? Do you have children that you take care of on a regular basis? Are you doing your own grocery shopping? Just basically anything related to limitations caused by this severity of noxacusis and how you are handling things.

I have 0 support from anyone in my family. My father has abandoned me about 2 years ago since I got all my ear issues.

My mother is completely negative anytime I talk to her. Very self centered and selfish. If I express concern over my living situation in this state I want money. If I say I’m suicidal it’s to punish her. Just basically anything she turns it on me and makes me even more stressed.

My ex-wife and I don’t fight most of the time, but we are not friendly at all and like to say anything that disrupts the balance makes things turn negative.

This condition makes it hard to be around anyone as previously I didn’t trust to put myself in situations where someone may suddenly crank the radio or do something extremely loud and unpredictable.

So are you protecting from any level of pain whatsoever? Like to say, sleeping in near silence is still seeming to hurt. But no burning deep in the ear and it’s not deep jaw pain or anything. Just starts aching around the outside of the ear at that level.

I know 24/7 protection is pretty controversial on here. I’m trying to give myself intermittent breaks during the day when my kids are at school and I can working from home. Sometimes I get mild pain, sometimes I don’t in the quiet during the day. I’m on a different floor of my townhouse than I sleep so maybe some sound I am not distinguishing from the rest is what’s causing the pain at night. I’m just really frazzled right now.

I’m kinda worried because wearing earplugs and earmuffs so regularly seems to cause irritation itself. How are people doing this?

Since I’ve obviously had a setback/worsening that is continuing to go downhill Im not sure of things. Like to say before if I had a bad setback 2 months was the healing time frame and it was never like this sensitivity wise. Now when I’m having new lower thresholds of pain I’m not sure if I’ll recover at all. Before a minor incident would be like 2 days.

I was sleeping without earplugs a few days ago. Now I can’t. I’m really hoping this reverses, but nothing seems to be backing off anymore. Just progressively worsening.

 

I read your story and I am sorry this happens to you now. You have no family support and a child which needs you.

I am in almost the exact situation, medically speaking, I started to get a bit better, then in the last weeks it got a lot worse, meaning the burning pain is almost non-stop. I am glad that I can sleep. It's hell on earth, I don't know what to do anymore, I cannot speak, I cannot tolerate my wife's voice, it's horrible.

What helped me a bit: Duloxetine and Gabapentin, although both have adverse effects.

I don't have any children, only a supportive wife, but I don't know how long she will take it, to live with a vegetable husband, because I cannot do anything anymore. She does the shopping, groceries, food, everything. I sometimes wash the dishes. I am glad that I can still work, I am a software developer and I am working from home. But the Zoom meetings are killing my ears.

Sorry I cannot give you more good news, but I am in the same situation as you. I cannot tolerate this nightmare anymore and feel that I am at the end of the road, seeing no light at the end of the tunnel. And it got worse, I cannot do any more the things that I could do 3-4 months ago (quiet restaurants, parks, TV on low volume, etc.)

 

The meds only help cope with the pain though right?

I have about a month and a half supply of Clonazepam left from when I had a prescription after I tapered. I guess I should have kept my prescription going and stocked up. I can no longer see the same doctor and I’m not even sure how to do an appt period. I can’t talk on the phone really to do telehealth. I doubt any new psychiatrist will do a text meeting. So far I’ve only been going to drop my kids off at school and pick them up and to the grocery store. I don’t know about going to a medical appt in some noisy building or something.

I hope your wife continues to support you through this. I’m glad you have someone. I’m sorry that you deteriorated suddenly also. I wish we knew they a certain amount of rest would help us recover some.

I don’t feel any treatment possibilities and, I do emphasize possibilities, are coming soon enough for me personally.

 

If you have pain hyperacusis, use hearing protection at all times outside your home. Unexpected, very loud noise can set you back, and I am talking out of personal experience.