How Do You Cope Mentally with Hyperacusis and Being Homebound?

Indeed, I actually got a short course of Prednisone for 5 days, it was a relatively low dose one week after I was exposed to noise. It seemed to improve things a little but nothing much to be honest. Plus it was only on my right ear, and two weeks later my left ear became much more bothersome all of a sudden. No idea how it'll go.

 

I understand your hyperacusis has a pain component to it. So did the GABA reduce the pain? Or did/do you have loudness hyperacusis as well? I am confused about hyperacusis, but I understand that loudness hyperacusis does not necessarily accompany pain (and, obviously, vice versa.)

 

I had both loudness hyperacusis and pain hyperacusis (auditory nerve would contract in response to sounds within certain frequencies). Even soft sounds, like crumbling plastic or paper would irritate me. The banging of dishes was just plain torture, like poking an open wound inside my cochlear. Both loudness hyperacusis and pain hyperacusis have been greatly improved in the last week.

 

I see. And awesome to hear, I hope this improvement lasts for you!

 

This description really fits my daily life and is much better than "tinnitus". I've told many people about the horrors of this condition and yet many still say "is it better?" when they see me.

I also like "acoustic assault syndrome" as I feel like I'm physically and mentally being assaulted every moment.

 

We're all suffering with you. I know it isn't much consolation but some people are suffering far worse than we are. They'd kill for a safe place to sleep and eat everyday LOL.

Mentally it's up and down. some days I'm optimistic, convinced that if I get into a solid routine, consistent noise exposure to non-noxious sounds, low inflammatory carnivore diet, fasting... I'll heal. Then other days I'm chain smoking cigarettes and binge eating LMFAO. Not conducive to recovery.

I'm about to get a job working from home I guess. Data entry. Minimal noise exposure hopefully. Maybe that'll get me more into a routine.

I'm not super worried about worsening to be honest... I think i would've worsened already since my severe onset in 2022. I've been more or less baseline since then. Like you said, there are stages to this emotionally. You come to grips with it in a way. although I definitely could faceplant at some point, especially if I get worse. But part of this -- at least it seems -- is relaxing into our reality. Stop being afraid of every little noise, even if it's kinda painful. That little clicking in the walls, a lawnmower going off, the garbage guy coming through -- it probably won't make you worse, so just chill. Just avoid those super traumatic noises close to your ears or whatever.

No friends. No GF. No community except randoms on the internet. LMFAO.

Family is supportive. Just my mom letting me live in her quiet condo in SoCal.

On my good days, I meditate a lot. Literally meditate for 20-30 minutes. Take a break. 2 hours later, same thing. At one point, I was meditating for damn near 3 hours a day. Quite literally imagining a future where I heal from this. Once you get good at meditation, it actually feels real that it could happen.

I was able to pull off an 8 day dry fast recently, hoping it would help. Sadly, dry fasting didn't LOL. Although I still believe in it. Just gotta be more consistent along with the carnivore diet.

And yes, I still have years of hope left. I mean there's no alternative... suicide? Nah. Things are still pretty damn good, looking at the big picture. Safe, quiet place to sleep. Sunlight through the window. Occasional fresh air with earmuffs on. Food. My mom. Mostly quiet dogs. Getting a job that pays shit but will at least give me some degree of self-worth.

It's hard to be grateful sometimes but yeah, like I said, some people would trade what we have. Imagine doing life in a Supermax prison. 23 hour lockdown, like El Chapo LMFAO. I bet he would take noxacusis in a heartbeat.

Anyway, I'm not sure how bad you are... I'm not catastrophic but definitely severe. Can't even make my own bed without earmuffs on.

Fucked up condition but hey... there's still hope. This is just our challenge.

It's like one dude told me once: "even if your life was perfect, you'd still find something to complain about."

That little comment has stuck with me because it's true. Give me perfect ears and a busy life, and I'd still be thinking it's somehow not good enough, which is kinda how I thought before I got noxacusis.

The reality is -- noxacusis or no noxacusis -- there are always tough challenges in life. Happy, successful people meet them with consistently solid decision making. Unhappy people don't. Just gotta find a modality of healing and attack it with a consistent mindset day in, day out. A slow, steady onslaught.

Easier said than done with this fucking thing though, I know.

 

@Merlin L, you have a similar story to mine, including the feeling as if you were making a slight bit of progress before a setback (mine was a sudden thunderclap which has undone the small amount of progress I had made).

Basically I've had tinnitus for many years but habituated until about 16 months ago. Suddenly developed horrendous ringing which developed into musical tinnitus (MES), reactive tinnitus, & severe hyperacusis/noxacusis. My hyperacusis/noxacusis doesn't like most noise but hates human voices at any level above a whisper & digital noise (so no phones or TV etc).

I try to cope with mine by (as the user name suggests!) reading, it's always been an escape for me & I need it more than ever. Can't work at present, barely leave the house except for medical appointments, & spend most time alone. I think if I had had one of the issues it may have been easier but to get reactive tinnitus, severe hyperacusis/noxacusis, & musical tinnitus all at once - it has been difficult. It can be hard to concentrate on reading at times with the noise levels & my musical tinnitus has a habit of flicking through the mental jukebox & picking a song that complements what I'm reading, i.e. books about WWII can produce the theme from Dad's Army or big band tunes which can be very distracting at high volume.

I think we each have to find out what works for us.

 

Same here. My favorite hobby was always reading, even as a child. I didn't like crayons and coloring books at all. I used them only when required at school. Even now, as an adult, I don't understand the adult coloring book trend, although I did give it a try.

I spend my days doing light housework and caring for my cat and learning as much as I can about tinnitus & hyperacusis from this website--but ordinary pleasure reading is awfully difficult right now, due to my attention span being so short and my anxiety so high. I also had a resurgence of musical tinnitus last week after eight months without it, and I have no idea why. And now that the weather is getting warmer (here in the Northern hemisphere, that is), I'm also experiencing some tinnitus reactivity from the portable air conditioner, tower fan and ceiling fan, even though none of those are terribly loud and I try not to get too close to them.

I rarely go anywhere other than to acupuncture appointments and the supermarket and the occasional medical appointment. No matter where I go, I feel socially awkward, like having an invisible chronic illness now makes me fundamentally different from everybody else.

On a day when my mood isn't so low, I try to smile and act casual when I'm in public, but on a day when the awareness of my ear problems weighs heavily on my mind, I'm unwilling to pretend that I'm cheerful and carefree. So just trying to settle on a mood or demeanor is kind of a big deal for me. Any time I leave my apartment, I wonder how I'm going to feel and behave that day, the way some women dither over whether to wear one outfit or another when they get dressed in the morning.

 

Hey @AvidReader, I've been reading a lot as well these days. What kind of books are you into? Do you have any good recommendations? I've been reading lots of memoirs. One was about a guy who went to prison in the 1950s in the US South and spent a total of 12 years in solitary confinement. Talk about suffering!

I also started learning how to play chess online, so that helps to fill up my days and pass the time. I've been thinking about starting a crochet project, but even this makes me sad, as I feel the piece I'd make would become the symbol of the suffering and sorrow we go through. I'm dramatic haha. I do feel like I need to find more quiet activities though, because it seems like it's going to take a long time before it gets more livable.

I spend most of my days alone too. I try to keep in touch with friends online, but it's been difficult. Before my setback I could hang out with someone for couple of hours and talk, but now I'm back to being alone.

I used to be a PhD student/researcher before my ear injury. I had to stop working and I can't attend the university anymore, so it's been a difficult lifestyle change to cope with. I had just started dating again, I was traveling more after the pandemic, and I wanted to apply for a post-doc program, but now it feels like I'm just watching life pass by without being able to participate in it. It makes me really sad when I think about it, so I try not to. I've been trying to accept my situation for now, but inevitably I'm also worried about the future, the unknown of this condition, and the possible worsening of hyperacusis.

I have had hyperacusis for 5 months now, and I had improved from severe loudness hyperacusis to moderate loudness hyperacusis, but my setback caused me to decline and now I have mild pain hyperacusis. I've never dealt with getting pain directly from the sound before. I had just general twitches of pain that came and went randomly (probably due to ear muscle spasms), and I would experience some pain after talking for 1-2 hours on the phone for example. But this pain directly from sound feels different and scary. What kind of pain are you having? How long have you had hyperacusis now? Has the pain aspect gotten any better for you?

So sorry to hear about your setback too. It really sucks when you feel like you've made progress, but then have to start all over again. Are you improving from your setback? I feel like mine is getting a little better, but my left ear is having almost constant pain right now. Lots of tiny sounds feel like they cut through my head and cause more pain. That makes me worried.

Musical tinnitus seems pretty uncommon even on this site. How does it feel like? Is it like an actual song you hear? Are there instruments you can distinguish? A vocal? Do you currently have both tinnitus and musical tinnitus? I can't even imagine how distracting that could be. I hope you can at least habituate to it. Sending you hugs!

 

Which brand GABA supplement are you taking? And how long have you been taking it?

 

Puritan’s Pride 750 mg from Amazon. It improved my hyperacusis overnight (no significant change with tinnitus). This is my 2nd week on it. So far so good.

 

Ooh what type of cat do you have? I have a black male cat named Cole (I named him after a character from the original Charmed tv series) & a calico female named Mona (named by previous owner).

It could be that high anxiety caused a resurgence of musical tinnitus. Sometimes people have said that their MES has returned when they are under high levels of stress (I'm not saying anxiety/stress is a cause but it can be a trigger). Some people also tend to hear it more when there are sources of white noise i.e. fans or air con units etc, I think it's called audio pareidolia.

I know what you mean about feeling socially awkward. Due to the hyperacusis/noxacusis & tinnitus being so reactive to voices, I wear really good ear defenders when I go to medical appointments etc & I get some strange looks. I don't care now, you gotta do what you gotta do to keep safe. I need people to whisper & out in public people just don't keep their voices at reasonable levels, so I keep the defenders on but this means that the tinnitus & MES is so loud that I struggle to communicate effectively at times so I have to have someone with me to register me for my appointments etc & take notes of what the doctors are saying. Forget socialising! No chance at present.

Yes, I read most genres but I'm not keen on romance/chick-lit type books. I like Simon Turney's books set in the Roman Empire like his 'Damned Emperors' historical fiction series on Caligula, Commodus, & Domitian which is great. I also like nonfiction - history & true crime but I like autobiographies too. I read tons of thrillers/crime procedurals.

It's difficult having to put your life on hold, I feel for you. Luckily I managed to finish my MA a few years before this really bad stuff kicked in. Can't imagine trying to study at that level with this racket in my head.

My noxacusis feels like a hot knitting needle or poker is being stabbed into my ear. Horrible sensation. Unfortunately I'm still at the level from my setback. Not much improvement as yet. I wonder if it's because it's summer & I'm getting hit with a lot of noise because you have to have the windows open sometimes. I don't like to wear my defenders indoors much but I keep getting hit with sudden lawnmower noise, kids screaming, & loud cars & bikes. I'm sure that's not helping my ears calm down.

So my MES can be 40% just noise like several notes on a church organ being played together or discordant guitars. I also get what I call my 'jazz club' nights when I hear jazz music, can hear the hum of people talking, & the clinking of cutlery & glasses. Weird thing is I hate jazz & never listened to it so where is it coming from? 60% of the time though I hear actual music like listening to a song playing through an earbud. It sounds like a perfect copy of the song including the singer's voice. It throws up songs from childhood all the way up to about 10 years ago: pop, rock, musicals, classical, even opera. Yeah I get opera too, sometimes just a lone male voice but also duets with a female one, all in what sounds like Italian. Then there's the choirs! It can change all day or I can have the same song on repeat for hours/days. Bohemian Rhapsody on repeat just when you're trying to go to sleep is... not good. On top of this I have engine noise & hissing/static tinnitus too.

I'm not sure about habituating to all this - I'm always aware of it even when reading, but it is better than the horrible fire alarm noise I had in February 2022 before all this started. I count that as a blessing anyway.

 

My cat is an orange tabby. I was a big fan of the original "Charmed" television show, so I know exactly who Cole Turner is. (And to this day, I can't believe Phoebe stayed with him for as long as she did, LOL).

The musical tinnitus that I have is a single short melody that plays over and over again. Not a complex melody by any means, more like a children's song with very few notes in it. I don't know where it came from, as it isn't a real song. I think you're right, it probably arose from stress and/or extra exposure to noise. Last week was hell, and being exposed to the sounds of so many indoor appliances didn't help. I can't wait for autumn to come so that I can put the A/C and fan back in storage. At least day was a better day, weather-wise. Temperatures were cool enough for me to open the windows and not use the A/C or fan at all.

I stumbled onto an academic paper about the cognitive dissonance that people feel when they have an invisible disability or a chronic illness, and it's got me thinking more about the long-term social implications of life with tinnitus & hyperacusis. I'm not quite ten months into this, but I already feel like that would be considered "chronic" by most people's standards. I'm also thinking about what it means to be at home and in relative isolation vs. out and about. I feel like I'm more "me" when I'm home, only because I can do what I like and not hide my feelings. At the same time, I think the isolation isn't healthy and that I might feel more like my old self if I went out more and interacted more, even though I'm not keen on interacting with anybody and I would feel like a fraud just trying to have a normal conversation with people.

I think that over time, I and others who struggle with ear problems are going to have to figure out how to present ourselves to the world. I never liked cognitive dissonance when I was healthy, and now that I'm sick, I like it even less.

I hope your noxacusis and tinnitus fade soon so you can get back to a more normal way of life again. And that goes for everyone on this board! I love all of you guys and I'm so glad for the advice and camaraderie you've shared. It's just unfortunate that we had to meet under these circumstances.

 

Love orange tabby Garfields!

Nice to meet another original Charmed fan. Cole was kinda hot though.

I find each season brings its own challenges. Spring/Summer you have all the outside noise & fans etc, Autumn/Winter I have the central heating playing havoc with my chronic dry eyes! Can't win.

I've had other chronic illnesses for a while so staying home is not new to me, but the constant non-interaction with others is. I think I cope pretty well as I was always very introverted - I can be social for short bursts but I need a lot of alone time to recharge.

I hope you too are eventually able to get back to normal (or as normal as we can). I agree that it's nice to meet others who can understand but I wouldn't wish what we have on anyone.

 

Please keep us updated on your progress. If you continue to see improvements I’ll definitely be trying this soon.

 

I'm about 2 weeks into this supplement. My hyperacusis has definitely improved (about 50% improvement). No effect on tinnitus. I forgot to take it one night and couldn’t sleep well that night.

 

That’s a pretty remarkable hyperacusis improvement for 2 weeks! I hope it keeps getting better.

 

What was the new supplement you tried?

 

He took GABA from Puritan's Pride.

 

The GABA was from the brand Puritan's Pride. I’ve stopped it now after completing a 2nd bottle. Now that I think back, it could have just been a placebo. But I was in such a bad shape, any placebo would have been welcomed.