How Do I Live with Hyperacusis?

[addot]

I've had hyperacusis for 4 years now. Tried sound therapy but it didn't work, and I haven't improved much at all during these 4 years. This is likely here to stay, so now I have to learn to live with it. I want to learn to live with this. The question is... how?

I feel so alone. Literally 99% of the people I know have no idea what hyperacusis is. I feel like an alien; the fact that most people in the world can carry on living their lives like normal feels unreal to me. It is so isolating and makes it incredibly hard to relate to friends. I also feel incredibly fragile. I protect my ears against loud noises as best as I can, but I can't foresee everything all the time. I am constantly aware that any fuck up, at any point, can cause my hyperacusis to worsen even more, and I am not so sure I can take that. I am 28 years old, and yet I feel like I'm living on borrowed time; that, eventually, this thing will kill me.

But I want to keep living. I really do. I got things that I look forward to, things that excite me, plans, and dreams I hope to achieve. I don't want to give it all up. If this thing is going to follow me for the rest of my life, I want to find a way to move on, but I honestly do not know how. The closest I can get is to ignore it, don't focus on it, don't let it dominate my thoughts. I can do that somewhat, sometimes, but never completely. It's always there, in the back of my mind. How wouldn't it be? How do you ignore something that--with every clanking plate, every closing door constantly reminds you that it exists? I also feel like just "forgetting about it" isn't healthy, as I'm not facing it head on, but at the same time how do I "face this" any more than I already face it every day?

Sometimes I feel like being more involved and getting in touch with other people who have this might help. But these communities also make me incredibly depressed. I think this is something everyone feels, in some way or another, when browsing through Tinnitus Talk. There's so much darkness and hopelessness, it's nigh impossible not to let it get to me. It doesn't help me move on, it just puts me in a bad place.

I want to move past the hopelessness, though. I'm posting this in hopes to hear from other people who maybe went through the same thing and somehow made it through, even if just barely. How did you do it? How do you do it?

 

[Wrfortiscue]

4 years, no improvement? I'm so sorry, that's awful. There's got to be something you can do or at least some treatments coming out.

This crap is ridiculous.

 

[aura]

Your words describe what I'm dealing with, what most of us here are dealing with every day.

First of all, you are not alone.

99% of the people you'll meet here know and understand what hyperacusis is. Not to worry, you are among aliens here

I feel fragile too. Here I am, after a shitty day, after a shitty year, with my earmuffs on (because I don't want to hear my husband snoring but in the same time it helps me a lot being next to someone who understands me), waiting for the Clonazepam to kick in.

The fact that you want to keep on living, to experience all the good things life has to offer, is the thing that counts the most. And even if things get worse, we tend to cope better (at least that is what I have noticed in the last year).

Getting in contact with people who have this condition is helpful.

You just have to avoid reading the negative stories (I know it is tempting, but try not to do this very often).

What you could do on the forum is search for useful information (about treatments, supplements, coping mechanisms,etc), helping other people that are in need for a piece of advice or just to be listened by someone, and... try to have some fun!

Because, since you asked, I want to tell you that sense of humour is my main coping mechanism.

Try to keep your mind busy and laugh as much as possible, even if this is the last thing you feel like doing.

I suggest the "Chit Chat and All That" thread. We're a bunch of crazy people there and there's a good chance that we could put a smile on that 28-year-old face .

"Relax, nothing is under control"

At least this is what I've learned in the last year.

Too bad I couldn't remember this in the morning, when a new sound hit me out of nowhere and I desperately called my husband to come back home from work ASAP. It's a good thing he still has his driver's license, considering that he drove at 200 km/h...

 

[addot]

4 years, no improvement? I'm so sorry, that's awful. There's got to be something you can do or at least some treatments coming out.

This crap is ridiculous.

I try to keep up with the research by checking Tinnitus Talk every now and then, but over these years I learned that waiting for a cure does me no good. Don't get me wrong, I share the sentiment! It's absurd that there's no cure for this. But there isn't, and no one knows when there will be, so I can't condition my wellbeing to it. I feel like the best thing (for me, at least) is to assume there are no treatments on the horizon and just learn to cope with it. Which brings me back to the original post...

 

[addot]

Your words describe what I'm dealing with, what most of us here are dealing with every day.

First of all, you are not alone.

99% of the people you'll meet here know and understand what hyperacusis is. Not to worry, you are among aliens here

I feel fragile too. Here I am, after a shitty day, after a shitty year, with my earmuffs on (because I don't want to hear my husband snoring but in the same time it helps me a lot being next to someone who understands me), waiting for the Clonazepam to kick in.

The fact that you want to keep on living, to experience all the good things life has to offer, is the thing that counts the most. And even if things get worse, we tend to cope better (at least that is what I have noticed in the last year).

Getting in contact with people who have this condition is helpful.

You just have to avoid reading the negative stories (I know it is tempting, but try not to do this very often).

What you could do on the forum is search for useful information (about treatments, supplements, coping mechanisms,etc), helping other people that are in need for a piece of advice or just to be listened by someone, and... try to have some fun!

Because, since you asked, I want to tell you that sense of humour is my main coping mechanism.

Try to keep your mind busy and laugh as much as possible, even if this is the last thing you feel like doing.

I suggest the "Chit Chat and All That" thread. We're a bunch of crazy people there and there's a good chance that we could put a smile on that 28-year-old face .

"Relax, nothing is under control"

At least this is what I've learned in the last year.

Too bad I couldn't remember this in the morning, when a new sound hit me out of nowhere and I desperately called my husband to come back home from work ASAP. It's a good thing he still has his driver's license, considering that he drove at 200 km/h...

Thank you so much, this helps so much you have no idea. I feel less alone already.

I also feel dumb that I never even thought about the general chat section on this forum!! Thanks for the suggestion! I should go there more often...

 

[MindOverMatter]

I feel so alone. Literally 99% of the people I know have no idea what hyperacusis is. I feel like an alien; the fact that most people in the world can carry on living their lives like normal feels unreal to me. It is so isolating and makes it incredibly hard to relate to friends. I also feel incredibly fragile. I protect my ears against loud noises as best as I can, but I can't foresee everything all the time. I am constantly aware that any fuck up, at any point, can cause my H to worsen even more, and I am not so sure I can take that. I am 28 years old, and yet I feel like I'm living on borrowed time; that, eventually, this thing will kill me

First of all, really sorry to hear about your struggles. It's quite apparent that you feel completely on your own with this condition, and that you find it somewhat impossible to accept the situation you are in. Even after 4 years. You are literally shouting out for help, which is a good thing.

You might feel like an "alien", but you shouldn't be so hard on yourself. Did you ever have a deep talk/conversation with your friends, family or any others regarding your struggles?

It's so important imo to have someone you can talk to in such a matter.

Being on the edge, and feeling fragile isn't easy. But at the same time, maybe there can be room for you to change your mindset over time - with help? Only you really know how you are, and your condition (it's subjective), but it seems quite obvious that you think worst case scenario? It can only get worse?

Reality is that there is an option of improving for the better. It can get better, in general. And for many hyperacusis can and do improve a lot over time. I think you could need some therapy with counselling such as CBT or similar. You have to start somewhere, because it seems like you are at a dead end in the moment. Preferably someone that has experience with cases of hyperacusis and the likes.

There might also be a great risk of you having developed phonophobia - a constant fear of sound - which in turn triggers your hyperacusis even more - leaving you in a constant fight or flight mode. This is something that usually should be treated together with someone trained in the field.

There is a lot of hopelessness and darkness to read about, and that won't do you no good where you are now. You need positive stories, and a way forward.

...and remember, you are not alone! But it's difficult facing this completely on your own in real life.

I feel like the best thing (for me, at least) is to assume there are no treatments on the horizon and just learn to cope with it. Which brings me back to the original post...

Yes, waiting for a cure (that might not happen) is just like pausing life. A "cure" for this condition can be many things, but the main goal for you personally should be to able to get happiness back in your life again? A way to look forward, and a way through. How to cope with everyday life in a way that can at least give you a certain amount of joy. At least that's how I see it...

 

[Juan]

If this thing is going to follow me for the rest of my life, I want to find a way to move on, but I honestly do not know how. The closest I can get is to ignore it, don't focus on it, don't let it dominate my thoughts. I can do that somewhat, sometimes, but never completely. It's always there, in the back of my mind.

It's called acceptance, and also adapting to this new condition. You will have to change the way you live, the place where you live, your daily habits... everything.

But there are still spaces of freedom from that prison that hyperacusis is, and activities you can do.

 

[Wrfortiscue]

I try to keep up with the research by checking Tinnitus Talk every now and then, but over these years I learned that waiting for a cure does me no good. Don't get me wrong, I share the sentiment! It's absurd that there's no cure for this. But there isn't, and no one knows when there will be, so I can't condition my wellbeing to it. I feel like the best thing (for me, at least) is to assume there are no treatments on the horizon and just learn to cope with it. Which brings me back to the original post...

Smart man.

 

[Athens]

Do you also have tinnitus?

I have had hyperacusis for a little over a year with tinnitus. I have worn sound generators and listen to pink noise through them for most of the day. The exposure to normal, everyday sounds combined with the sound generators seems to have aggravated both the hyperacusis and tinnitus. I understand your frustration. I have started with a CBT therapist who has worked with a lot of tinnitus and hyperacusis patients.

I am 56. You are much younger than me and even though you have lived with this condition for four (4) years, there seem to be far more people who have experienced a fair amount of improvement (especially younger people) than those who never improve or even worsen. I played golf today and it is hard for me to believe that the hyperacusis and tinnitus will not change for the better at some point or perhaps I will just accept that my life is far more limited and I will move to a small fishing cabin on a creek in the mountains of North Carolina.

 

[aura]

I also feel dumb that I never even thought about the general chat section on this forum!! Thanks for the suggestion! I should go there more often...

Check out the "General Chat" and the "Success Stories" categories!