Things Tinnitus & Hyperacusis Sufferers Can Look Forward to While Waiting for a “Treatment”

[Orions Pain]

Before my tinnitus & hyperacusis, things I looked forward to were birthday parties, trips with friends, concerts, dates, holidays, just celebrations in general. Now that I am pretty much confined to my home for the time being, i struggle to find a will to live. I hardly have anything to look forward to anymore.

I've decided to try to find some things I can fill my time with in the meantime or perhaps put on my calendar as milestones of "making it" through the week, month, etc. Like little treats or rewards for myself. Material items do not bring me any sort of joy.

Really having trouble with this lately.

How do you guys keep yourself from going crazy while we wait for help?

 

[Michael B]

I'm 8 years into this but in the early days I kept a journal and wrote about how I was feeling every evening. It's the one thing that got me through this.

 

[Tybs]

I highly enjoy playing video games online with my friends. We have one evening per week where we team up in some cooperative game and smash our foes together: this is something I have been looking forward to every day in the past year, even in the short period where I had hyperacusis symptoms. Since there is full control over volume digitaly, I could always adjust settings whenever needed, and these evenings resulted in me completely forgetting about my T for multiple hours.

 

[Harley]

Before my tinnitus & hyperacusis, things I looked forward to were birthday parties, trips with friends, concerts, dates, holidays, just celebrations in general. Now that I am pretty much confined to my home for the time being, i struggle to find a will to live. I hardly have anything to look forward to anymore.

I've decided to try to find some things I can fill my time with in the meantime or perhaps put on my calendar as milestones of "making it" through the week, month, etc. Like little treats or rewards for myself. Material items do not bring me any sort of joy.

Really having trouble with this lately.

How do you guys keep yourself from going crazy while we wait for help?

Just like yourself and most people on the outside world, I was always looking forward to social gatherings, vacations and relax time.

These days I'm looking forward to surgical procedures, since I get to be unconscious for a while (such as my wisdom teeth extraction a while ago).

The couple hours sleep a day that I get is about the only relief, before the inevitable happens.

 

[Orions Pain]

Just like yourself and most people on the outside world, I was always looking forward to social gatherings, vacations and relax time.

These days I'm looking forward to surgical procedures, since I get to be unconscious for a while (such as my wisdom teeth extraction a while ago).

The couple hours sleep a day that I get is about the only relief, before the inevitable happens.

Sleep is the only part of my days that I enjoy.

 

[Sash]

I am sorry to hear you are struggling. I understand where you are coming from. Some people look forward to their spouses and kids but single people maybe feel somewhat isolated.

It is a huge upheaval once you get Tinnitus/Hyperacusis as life just stop and becomes tedious. Like me you become somewhat a socially recluse.

While you don't want to be around loud noise - I think it still important to still go out with friends to quiet bars or dinner for a number of reasons to lift one's spirits and take your mind off Tinnitus - laughing is the best therapy. My Tinnitus is so loud and have Hyperacusis but I find I am able to forget about my Tinnitus when with friends. Have a few drinks and get merry.

After Tinnitus had given up so many things - music / dancing I miss desperately as thats the "only" thing that makes me truly happy

I have been struggling of late as Tinnitus has doubled in loudness but today was a good day I had a haircut when to the gym and that has lifted my spirits and actually was able to forget about my Loud Tinnitus (can hear it in the shower) plus mild hyperacusis. Actually Tinnitus seems little lower maybe because I felt good about myself. Exercise is a must for a feel good factor.

Important you still do be active and treat yourself. Go to a nice hotel or Spa. Help others. Helping other less fortunate can help us forget our ow struggles and it is rewarding which makes us feel good about ourselves.

There is a lot you can do to make yourself happier. Just being positive may be the start to recovery.

 

[TheDanishGirl]

I am sorry to hear you are struggling. I understand where you are coming from. Some people look forward to their spouses and kids but single people maybe feel somewhat isolated.

It is a huge upheaval once you get Tinnitus/Hyperacusis as life just stop and becomes tedious. Like me you become somewhat a socially recluse.

While you don't want to be around loud noise - I think it still important to still go out with friends to quiet bars or dinner for a number of reasons to lift one's spirits and take your mind off Tinnitus - laughing is the best therapy. My Tinnitus is so loud and have Hyperacusis but I find I am able to forget about my Tinnitus when with friends. Have a few drinks and get merry.

After Tinnitus had given up so many things - music / dancing I miss desperately as thats the "only" thing that makes me truly happy

I have been struggling of late as Tinnitus has doubled in loudness but today was a good day I had a haircut when to the gym and that has lifted my spirits and actually was able to forget about my Loud Tinnitus (can hear it in the shower) plus mild hyperacusis. Actually Tinnitus seems little lower maybe because I felt good about myself. Exercise is a must for a feel good factor.

Important you still do be active and treat yourself. Go to a nice hotel or Spa. Help others. Helping other less fortunate can help us forget our ow struggles and it is rewarding which makes us feel good about ourselves.

There is a lot you can do to make yourself happier. Just being positive may be the start to recovery.

Not for my ears, These days my own laugh hurts my ears And if I keep laughing every now and then, it turns into a roaring headache, so I prefer to never laugh.

I don't know if it's that bad for you @Orions Pain? I hope not.

 

[Orions Pain]

I am sorry to hear you are struggling. I understand where you are coming from. Some people look forward to their spouses and kids but single people maybe feel somewhat isolated.

It is a huge upheaval once you get Tinnitus/Hyperacusis as life just stop and becomes tedious. Like me you become somewhat a socially recluse.

While you don't want to be around loud noise - I think it still important to still go out with friends to quiet bars or dinner for a number of reasons to lift one's spirits and take your mind off Tinnitus - laughing is the best therapy. My Tinnitus is so loud and have Hyperacusis but I find I am able to forget about my Tinnitus when with friends. Have a few drinks and get merry.

After Tinnitus had given up so many things - music / dancing I miss desperately as thats the "only" thing that makes me truly happy

I have been struggling of late as Tinnitus has doubled in loudness but today was a good day I had a haircut when to the gym and that has lifted my spirits and actually was able to forget about my Loud Tinnitus (can hear it in the shower) plus mild hyperacusis. Actually Tinnitus seems little lower maybe because I felt good about myself. Exercise is a must for a feel good factor.

Important you still do be active and treat yourself. Go to a nice hotel or Spa. Help others. Helping other less fortunate can help us forget our ow struggles and it is rewarding which makes us feel good about ourselves.

There is a lot you can do to make yourself happier. Just being positive may be the start to recovery.

Mine is still fairly fresh so I am just afraid of making it worse and want to give my ears as much of a chance to recover as possible. I would love to see friends but the burning sensation in my face/ears which is always present lately makes things hard. I don't want to be a downer around my friends and I'm not really a pleasant person to be around in general these days.

 

[Orions Pain]

Not for my ears, These days my own laugh hurts my ears And if I keep laughing every now and then, it turns into a roaring headache, so I prefer to never laugh.

I don't know if it's that bad for you @Orions Pain? I hope not.

Not that bad but it's getting there I put an ear plug in my "bad" ear while at work yesterday and felt so much less sensitive. I was finally able to join a conversation with my coworkers and we all joked around for a bit. Crazy thing was I could hear the sizzling going CRAZY in my plugged ear, and got fleeting tinnitus in it several times. Eventually I had to leave the conversation because my good ear started to feel discomfort, it probably got overworked from my other one being plugged.

I paid for it an hour later when my "good" ear started thumping non-stop for a few hours.

 

[Orions Pain]

Things I was thinking of treating myself to:

- quiet spa days
- getaways to beach towns/hikes once a month
- a dinner at a nice quiet restaurant

I think I am quitting my job and moving back home soon, so I need to find ways of keeping myself occupied during the day. I was thinking of learning how cook good, puzzles, painting, and reading, and signing up for Yoga or going to the gym early in the mornings when it's quiet.

 

[PeteJ]

I can't work. Do you?

I can't answer the OP questions. I don't look forward to anything but death. I am on social assistance and waiting for disability.

 

[Harley]

Sleep is the only part of my days that I enjoy.

Although I'm not entirely sure that calling it sleep is the right word.
Basically just fading in and out for a bit here and there.

Haven't experienced the deep refreshing sleep (which we all once had) for over 3 years now.

 

[Orions Pain]

I can't work. Do you?

I can't answer the OP questions. I don't look forward to anything but death. I am on social assistance and waiting for disability.

I currently have a job but I'm highly considering quitting soon. It's gotten way too noisy since we've moved to a new office and my mental state is fragile right now.

I'm sorry you're also struggling

I don't look forward to much these days but I'm trying to find small things that will make me happy.

 

[dan]

Although I'm not entirely sure that calling it sleep is the right word.
Basically just fading in and out for a bit here and there.

Haven't experienced the deep refreshing sleep (which we all once had) for over 3 years now.

3 years, no improvement? What caused your tinnitus, did you have more noise traumas?

 

[TheDanishGirl]

Things I was thinking of treating myself to:

- quiet spa days
- getaways to beach towns/hikes once a month
- a dinner at a nice quiet restaurant

I think I am quitting my job and moving back home soon, so I need to find ways of keeping myself occupied during the day. I was thinking of learning how cook good, puzzles, painting, and reading, and signing up for Yoga or going to the gym early in the mornings when it's quiet.

Sounds like a good plan. Myself, I try to hang on to those small moments, that may seem mundane to normal people, but mean everything to me now.......being able to read a little bit, cook and eat some nice food or get some nice take out. A walk outside at night where it is more silent and looking up at the sky full of stars. Some days ago I met a chatty kitty cat, who wanted to be pet, on one of my late evening walks......I treasure such an experience. Every little slightly positive thing I can hold on to......we gotta hold on to those, as best we can.

It's kinda eerie. I got this poster in a frame on my living room wall that says "enjoy the little things in life, cause one day youll look back and realize they were the big things". I got that poster up before tinnitus and hyperacusis set in.........little did I know it would have a profound meaning for me, some couple years later.

I regularly have days where I can see virtually nothing postive, but most days I am able to find little moments of positive and that is crucial.

 

[Tweedleman]

Sleep is the only thing I look forward to. And even then I experience nothing but unpleasent dreams, if not downright nightmares. I wish I could just go into cryosleep and wait for the future treatments. I don't want to die, but I don't want to live like this. Hot baths are also soothing and help. As far as hobbies go, I can't concentrate on anything well enough to get away from my hearing damage and tinnitus. Maybe in time, but probably not. Every day I just go on, existing.

 

[GoatSheep]

Sleep is the only thing I look forward to. And even then I experience nothing but unpleasent dreams, if not downright nightmares. I wish I could just go into cryosleep and wait for the future treatments. I don't want to die, but I don't want to live like this. Hot baths are also soothing and help. As far as hobbies go, I can't concentrate on anything well enough to get away from my hearing damage and tinnitus. Maybe in time, but probably not. Every day I just go on, existing.

Same with bad dreams and nightmares. Was even worse when psych put me on Ambien. Had nightmares of 3 men trying to gang rape me, my ex wife trying to get me put in jail and killing my children in a car wreck. Just horrible stuff.

 

[Orions Pain]

Sounds like a good plan. Myself, I try to hang on to those small moments, that may seem mundane to normal people, but mean everything to me now.......being able to read a little bit, cook and eat some nice food or get some nice take out. A walk outside at night where it is more silent and looking up at the sky full of stars. Some days ago I met a chatty kitty cat, who wanted to be pet, on one of my late evening walks......I treasure such an experience. Every little slightly positive thing I can hold on to......we gotta hold on to those, as best we can.

It's kinda eerie. I got this poster in a frame on my living room wall that says "enjoy the little things in life, cause one day youll look back and realize they were the big things". I got that poster up before tinnitus and hyperacusis set in.........little did I know it would have a profound meaning for me, some couple years later.

I regularly have days where I can see virtually nothing postive, but most days I am able to find little moments of positive and that is crucial.

I try not to dwell on the past too much, it makes me sad how much I took things for granted. I've been looking at my life as if it's a new one from the day my tinnitus/hyperacusis set in, and trying to adjust from here on out.

It makes me happy to hear you are able to find little slivers of light and positivity amidst the pain. When I visit my parents we also go on walks around the neighborhood and we've befriended all the cats seeing them run up for cuddles and remember us makes me so happy each time.

"Hope dies last"

 

[Harley]

3 years, no improvement? What caused your tinnitus, did you have more noise traumas?

Not quite sure what caused it.
But about a year into it I was helping someone move a heavy piece of furniture when kids nearby set of bunch of fire crackers.
Couldn't let go of it as we were trying to negotiate steep set of stairs.
That one didn't help for sure.

 

[Backpacker]

I was helping someone move a heavy piece of furniture when kids nearby set of bunch of fire crackers.

Was that heavy piece of furniture maybe too heavy for you? And was there any other occasion where weightlifting caused ear issues for you? Are you sure the fire crackers hurt you?

 

[Ferret]

It sucks. It's a daily struggle. I caused mine by being a drunk idiot and taking my earplugs out while seeing one of my favorite bands play, so now I got myself a permanent reminder of my own propensity for reckless substance use (and self-sabotage in general). 5+ years now, I severely miss having the mental rest that silence provides. It is crazy-making, for sure, but life is too short to let it stand in the way of the important things I want to do in life. I have so many friends who have all sorts of ailments and regrets (far worse than tinnitus!) and I've come to learn that these hardships are just part of what makes us human, and what makes us appreciate the really special things - close relationships, a sense of purpose, loving oneself no matter how hard it can feel at times..

I quit my comfortable accounting job three years ago in order to go back to school to study engineering because I wanted something more challenging and enriching in life, and to hopefully build something good for the world. Tinnitus taught me that life was too short and too precious to not listen to my heart. And it definitely gave me a head start on the stoic grit that I needed to learn in order to handle the workload, haha! So, it definitely helps to find clever ways to spin the pain into fuel for the fire - whether tinnitus or any other hardship, really. Good luck, bud

 

[TheDanishGirl]

It sucks. It's a daily struggle. I caused mine by being a drunk idiot and taking my earplugs out while seeing one of my favorite bands play, so now I got myself a permanent reminder of my own propensity for reckless substance use (and self-sabotage in general). 5+ years now, I severely miss having the mental rest that silence provides. It is crazy-making, for sure, but life is too short to let it stand in the way of the important things I want to do in life. I have so many friends who have all sorts of ailments and regrets (far worse than tinnitus!) and I've come to learn that these hardships are just part of what makes us human, and what makes us appreciate the really special things - close relationships, a sense of purpose, loving oneself no matter how hard it can feel at times..

I quit my comfortable accounting job three years ago in order to go back to school to study engineering because I wanted something more challenging and enriching in life, and to hopefully build something good for the world. Tinnitus taught me that life was too short and too precious to not listen to my heart. And it definitely gave me a head start on the stoic grit that I needed to learn in order to handle the workload, haha! So, it definitely helps to find clever ways to spin the pain into fuel for the fire - whether tinnitus or any other hardship, really. Good luck, bud

Can we please refrain from saying there are far worse things then tinnitus? It's degrading to those of us who suffer severely from it (+ hyperacusis). It is very individual what we deem the worst condition to have. There is no such thing as a ranking what is the worst illness/condition for any given human being. For me personally, tinnitus + bad hyperacusis is really one of the worst conditions I could suffer from.

 

[Harley]

Was that heavy piece of furniture maybe too heavy for you? And was there any other occasion where weightlifting caused ear issues for you? Are you sure the fire crackers hurt you?

No it was not the weight.
It was the fact that I couldn't let go of it in order to quickly plug my ears.

 

[Orions Pain]

Can we please refrain from saying there are far worse things then tinnitus? It's degrading to those of us who suffer severely from it (+ hyperacusis). It is very individual what we deem the worst condition to have. There is no such thing as a ranking what is the worst illness/condition for any given human being. For me personally, tinnitus + bad hyperacusis is really one of the worst conditions I could suffer from.

Not to make this a disorder competition but there are many aspects of hyperacusis + tinnitus that earn it a spot as one of the worst things you can suffer from in my opinion. Most things that leave you house bound/unable to work at least typically have some kind of treatment options or something that brings you relief.

 

[Orions Pain]

It sucks. It's a daily struggle. I caused mine by being a drunk idiot and taking my earplugs out while seeing one of my favorite bands play, so now I got myself a permanent reminder of my own propensity for reckless substance use (and self-sabotage in general). 5+ years now, I severely miss having the mental rest that silence provides. It is crazy-making, for sure, but life is too short to let it stand in the way of the important things I want to do in life. I have so many friends who have all sorts of ailments and regrets (far worse than tinnitus!) and I've come to learn that these hardships are just part of what makes us human, and what makes us appreciate the really special things - close relationships, a sense of purpose, loving oneself no matter how hard it can feel at times..

I quit my comfortable accounting job three years ago in order to go back to school to study engineering because I wanted something more challenging and enriching in life, and to hopefully build something good for the world. Tinnitus taught me that life was too short and too precious to not listen to my heart. And it definitely gave me a head start on the stoic grit that I needed to learn in order to handle the workload, haha! So, it definitely helps to find clever ways to spin the pain into fuel for the fire - whether tinnitus or any other hardship, really. Good luck, bud

If anything, hyperacusis & tinnitus make me feel anything but human.

 

[serendipity1996]

Not to make this a disorder competition but there are many aspects of hyperacusis + tinnitus that earn it a spot as one of the worst things you can suffer from in my opinion. Most things that leave you house bound/unable to work at least typically have some kind of treatment options or something that brings you relief.

Yeah and the fact that there is very little understanding from the medical community. Heck, hyperacusis was basically a medical mystery even just 10 years ago. At least now there are organisations like hyperacusis research for raising awareness and patient advocacy but most clinicians don't really know much if anything about hyperacusis let alone how to go about treating it.

There's also a real dearth of scientific literature on treating it etc.

 

[Orions Pain]

but most clinicians don't really know much if anything about hyperacusis let alone how to go about treating it.

This is the scariest part. Knowing something can leave you in pain and absolutely nothing can be done about it except waiting it out for years and hoping it improves while still trying to "live life".

 

[serendipity1996]

This is the scariest part. Knowing something can leave you in pain and absolutely nothing can be done about it except waiting it out for years and hoping it improves while still trying to "live life".

Really hoping that it will improve for both of us with time especially since we are not suffering further acoustic traumas. Been reading success stories to give me strength lmao.

 

[PeteJ]

Yeah and the fact that there is very little understanding from the medical community. Heck, hyperacusis was basically a medical mystery even just 10 years ago. At least now there are organisations like hyperacusis research for raising awareness and patient advocacy but most clinicians don't really know much if anything about hyperacusis let alone how to go about treating it.

There's also a real dearth of scientific literature on treating it etc.

There's no treatment for it either particularly if either tinnitus or hyperacusis is severe or both are. I consider it worse than other conditions.

 

[Orions Pain]

There's no treatment for it either particularly if either tinnitus or hyperacusis is severe or both are. I consider it worse than other conditions.

Also good luck trying to get disability since both can't really be measured but you're unable to work.