Can It Get Any More Worse? Bad Reactive Tinnitus & Hyperacusis — Trouble Coping with External Noises

Thanks @another sean, I really appreciate the feedback and am happy you are doing better. You are correct I stopped wearing headphones and/or earplugs about a few weeks ago and because of the reactivity I've been listening to my tinnitus constantly so I hope that means something in the way of habituation even though it's only been a couple months.

Can you tell me when you were able to listen to music or TV on low again? I'm hoping it was sooner than a couple years :( I am still in silence at home most of the time.
Hi Blue, actually I still can't listen to regular music and TV from speakers. Or shall I say, I shouldn't, as it will probably raise my baseline. The only music I can tolerate is either playing my acoustic guitar with soft picks, which is another improvement because before i could only play with my bare fingers, or listen to vinyl records with no speakers and just a paper cone. As for TV and Movies, it's still captions city! FYI, always look for SDH captions if available. Those caption sounds as well as speech where as regular captions just caption speech. so it's confusing when you see someone on screen freak out and have no idea some loud noise occurred off screen.

I know how you feel regarding the new world of silence at home. It can feel isolating. But you should eventually get used to it and it wont bother you nearly as much. I still play video games in silence. That took some getting used to as well.

One thing that gave me strength when going through the hardest times was the story of Gaby Olthuis. She was interviewed by a show in the Netherlands here (there are English captions) and her mom was interviewed by Tinnitus Hub here.
 
@another sean, I'm so confused. Gaby is receiving or has at this point received euthanasia, correct? With all due respect I cannot handle those types of stories at present and am avoiding the suicide threads etc here for that very reason. I thought that was going to be a motivational YouTube video, that shook me up quite a bit. :(
 
One thing that gave me strength when going through the hardest times was the story of Gaby Olthuis. She was interviewed by a show in the Netherlands here (there are English captions) and her mom was interviewed by Tinnitus Hub here.
No offense, but this part comes across as socially tone deaf. Bizarre and perplexing too.

Care to elaborate more on it though? How exactly does the unfortunate (assisted) suicide of a tinnitus sufferer give you strength during rough times? Furthermore, in what way will this Gaby story help someone who is completely new to tinnitus? I hope you're aware that a newcomer might be in vulnerable state in regards to their mental health as well, right?
 
@another sean, I'm so confused. Gaby is receiving or has at this point received euthanasia, correct? With all due respect I cannot handle those types of stories at present and am avoiding the suicide threads etc here for that very reason. I thought that was going to be a motivational YouTube video, that shook me up quite a bit. :(
@IntotheBlue03, my apologies. We each handle and deal with tinnitus differently. I hope that yours will improve on its own. I have seen several posts here where people have had considerable improvement, even completely healed, within the first 6 months. I hope that happens for you. Just keep safe and give your hearing a chance to heal.
 
How is everyone in this thread doing? Care to give a 3 year update?

As for me, I can now handle everything in my kitchen, except the garbage disposal, without protection. Standing next to the washing machine is no problem. Standing next to the AC is no problem. I can also go outside at night, as long as there are no cars driving right past me, without protection but I only do this when taking out the trash and then scurrying back into my cave. I can also use a phone now. It does cause a very mild spike but calms down soon after. I think human speech is ok thru speakers. But music is still off limits.

I do think overall my base line has gone up, but at the same time it's not as reactive and I don't care quiet as much when it spikes (habituated). So when people ask if my tinnitus is better, it's hard to explain.
So you don't hear your tinnitus over the fans anymore?
 
Hey @another sean, I don't know about the others but I am 2 months in with severe centralized high frequency tinnitus that is reactive and your encouraging post is exactly what I was looking for.

So the reactivity has gone for you? Curious how long that has been the case?

The reactivity is the worst part for me and I would give absolutely anything to have the ability to mask. It is killing me.

If you have any reactivity tips and happen to see this I would appreciate your response.
I have your exact same symptom profile. What was your cause?
 
I have your exact same symptom profile. What was your cause?
I don't have a specific cause to point to unfortunately. I think the direct causes are cervical injuries and possibly autoimmune. I awoke from a nap and chronic tinnitus was just there. I did however have intermittent tinnitus (a few times a month for 30 seconds at a time) for the past 2 years.
 
I've thought quite a bit about you and find the news of your improvements astounding. Very happy for you, @another sean.
Even creaks in my hardwood floors were a problem at first.
Just curious; did such low sound cause spikes, and if so, did you do anything specifically to improve? Like exposing yourself to those sounds? Or did silence/time just fix it?

Thank you.

Stacken
 
Low sounds such as floors creaking were very agitating and loud. I had a bit of hyperacusis even tho I didn't know it at the time. It took a couple years to realize things were perceived to be a lot louder than they actually were. Like the fan in my refrigerator or ventilation fan in my bathroom. It was so loud to me at the beginning that I actually disconnected it.

A couple years later I reconnected it and couldn't hear it, thinking it was broken, and actually it was running and that's how I knew I had really bad hyperacusis in the beginning.

But all I've tried to do for these past 7 years is respect the tinnitus. To not go to loud places no matter how much I want to. To stop all sounds from speakers (music/TV/movies/games). No matter how much I want to hear those things again. I need to wear the very best earplugs and earmuffs I can find, for no matter how long, when I have to go somewhere. Of course the tinnitus will sound very loud when you do that but I know it will be temporary and it will go back to baseline when I get home and I've done what I can to not make tinnitus worse. I used to go to the gym pool with my earmuffs on. I don't care how dumb it looks, I will always respect and protect my tinnitus. I make sure my dental hygiene is the best it can be so I never have to have a dentist drill worsening my tinnitus. I go as far as doing my own flushing under my gum lines and add Hydroxyapatite to my routine.

So time and a lot of prevention, really.
 
I am in the same boat as most of y'all in this thread. My tinnitus is so loud with earplugs in or with earmuffs on. This is wild. If I'd only knew. Love y'all. Hope y'all are still trucking away. I've had severe tinnitus since January and it's only gotten worse and then this week I developed reactive tinnitus and hyperacusis due to seeking treatment from quack doctors. I don't know how to push on with this kinda pain. Mine is an extreme case and everything hurts, even with earplugs in it seems to react to the road noise in front of my house.
 
@Travis Henry, I can feel your pain all the way over here. A lot of us have been where you are now.

You can and will get better. You just need to sort your way out.

Short term benzo is the best way to drug yourself out of the worst pain but for me always a high dose of SSRI was a life saver.

I have been on and off Escitalopram the last 7 years. SSRI never worsened my tinnitus. The bad thing about SSRI is that you will get much more anxiety in the first 2-3 week. Therefore a lot of people stop taking it and do not recommend it. Full effect is not to be expected until 3-6 months.

Nobody promised anybody a life without any pain. You will get out of it stronger. I understand that it seems impossible to understand now.
 
That is true. But at what point does life become unreasonable or unlivable? Or is there even a threshold for that? My tinnitus feels like electricity shocking me most days and is intermixed with this high frequency zapping that makes me nauseous. I also have severe hyperacusis—the homebound kind; the kind where sounds even hurt with double protection on. My symptoms have been worse these past couple days... just random, as nothing's happened. But it sent me to an even darker place. I feel absolute dread and despair, like my life is over and I dunno how to cope. And all the things that brought this on to begin with were so seemingly normal, not loud sounds or hard meds.

Most people can't imagine or understand this situation. It's like being trapped in a torture chamber with no way out and it'll never kill you, so a horror movie come true, basically. I saw a TV show and it was about a lady who had terminal cancer. She had maybe a year left to live. It was sad and everyone was talking about how tough of a situation it was, which ya, that does suck and it would be sad to be in those shoes. But regardless, she was still happy and still doing her job as a school teacher. She was still having get-togethers with friends and family. She didn't have any problems living life, doing normal stuff, despite undergoing chemo and what not. It was terminal, though, so she'd die in a year or so.

But after seeing all that, I felt even more anxious about my situation 'cause here this person was, someone society considers the be-all and end-all of victims, or one of life's worst-case scenarios; someone they exalt in the namesake of tragedy; everyone mourning her situation and all, yet her life wasn't near as restrictive as mine. And she was gifted with a way out — death.

Not that I want to feel self-pity or want to think like that, but how is it possible not to? My situation is like being trapped in that chamber and you can't even be around people, live life, or exist in a meaningful way. I've lost relationships and hobbies, can't do anything fun barely, and on top of that, have this electricity tinnitus + severe hyperacusis. It's mental and physical anguish. And it won't kill me—ever. If it would, at least I would know relief is coming.

If, let's say, once reaching a certain severity point, tinnitus and hyperacusis were to cause the central nervous system to shut down or something, thereby ending your life, that would seem reasonable. The conditions would no longer seem so inhumane. But that's just make-believe and nature hasn't dictated such a solution. And when I take supplements or meds, I get permanent worsenings, and I can't afford to get any worse. So I feel like my 9 lives are up, yet they aren't 'cause it won't kill me — see the paradox? Reality is, with tinnitus and hyperacusis, you have endless lives, not 9, and you have endless opportunities to get worse, meaning it can always get worse, which seems unconscionable, but somehow it's true. I'm just realizing more and more how downright sadistic these conditions are. I feel like my mind and body are blown, but I dunno how not to go on. I feel so traumatized that I'm almost in a trance-like state-of-mind where all I can do is stare at the wall.

Not sure what to do. I've been praying for sufficient healing or death. I just feel like life's too unreasonable, like I'm no longer compatible with this world. Suicide or VAD are not options for me, so it feels truly hopeless. I'm just hoping a treatment or medication can come soon to help, which I'm trying to stay optimistic about.
 
No ENTs, no audiologist, no pain management understand. They all told me to not guard against regular sounds. Which doesn't seem to have helped me one bit and has only made my conditions even worse. So many doctors push medicines that make things worse also which is truly tragic. I got pushed to get on Gabapentin when I went to my ENT. I'm not sure that helped either. Wish there was more awareness about this all & a better protocol to help people not worsen their conditions. I love you all. ❤️
 
That is true. But at what point does life become unreasonable or unlivable? Or is there even a threshold for that? My tinnitus feels like electricity shocking me most days and is intermixed with this high frequency zapping that makes me nauseous. I also have severe hyperacusis—the homebound kind; the kind where sounds even hurt with double protection on. My symptoms have been worse these past couple days... just random, as nothing's happened. But it sent me to an even darker place. I feel absolute dread and despair, like my life is over and I dunno how to cope. And all the things that brought this on to begin with were so seemingly normal, not loud sounds or hard meds.

Most people can't imagine or understand this situation. It's like being trapped in a torture chamber with no way out and it'll never kill you, so a horror movie come true, basically. I saw a TV show and it was about a lady who had terminal cancer. She had maybe a year left to live. It was sad and everyone was talking about how tough of a situation it was, which ya, that does suck and it would be sad to be in those shoes. But regardless, she was still happy and still doing her job as a school teacher. She was still having get-togethers with friends and family. She didn't have any problems living life, doing normal stuff, despite undergoing chemo and what not. It was terminal, though, so she'd die in a year or so.

But after seeing all that, I felt even more anxious about my situation 'cause here this person was, someone society considers the be-all and end-all of victims, or one of life's worst-case scenarios; someone they exalt in the namesake of tragedy; everyone mourning her situation and all, yet her life wasn't near as restrictive as mine. And she was gifted with a way out — death.

Not that I want to feel self-pity or want to think like that, but how is it possible not to? My situation is like being trapped in that chamber and you can't even be around people, live life, or exist in a meaningful way. I've lost relationships and hobbies, can't do anything fun barely, and on top of that, have this electricity tinnitus + severe hyperacusis. It's mental and physical anguish. And it won't kill me—ever. If it would, at least I would know relief is coming.

If, let's say, once reaching a certain severity point, tinnitus and hyperacusis were to cause the central nervous system to shut down or something, thereby ending your life, that would seem reasonable. The conditions would no longer seem so inhumane. But that's just make-believe and nature hasn't dictated such a solution. And when I take supplements or meds, I get permanent worsenings, and I can't afford to get any worse. So I feel like my 9 lives are up, yet they aren't 'cause it won't kill me — see the paradox? Reality is, with tinnitus and hyperacusis, you have endless lives, not 9, and you have endless opportunities to get worse, meaning it can always get worse, which seems unconscionable, but somehow it's true. I'm just realizing more and more how downright sadistic these conditions are. I feel like my mind and body are blown, but I dunno how not to go on. I feel so traumatized that I'm almost in a trance-like state-of-mind where all I can do is stare at the wall.

Not sure what to do. I've been praying for sufficient healing or death. I just feel like life's too unreasonable, like I'm no longer compatible with this world. Suicide or VAD are not options for me, so it feels truly hopeless. I'm just hoping a treatment or medication can come soon to help, which I'm trying to stay optimistic about.
You're in my prayers man...
 
That is true. But at what point does life become unreasonable or unlivable? Or is there even a threshold for that? My tinnitus feels like electricity shocking me most days and is intermixed with this high frequency zapping that makes me nauseous. I also have severe hyperacusis—the homebound kind; the kind where sounds even hurt with double protection on. My symptoms have been worse these past couple days... just random, as nothing's happened. But it sent me to an even darker place. I feel absolute dread and despair, like my life is over and I dunno how to cope. And all the things that brought this on to begin with were so seemingly normal, not loud sounds or hard meds.

Most people can't imagine or understand this situation. It's like being trapped in a torture chamber with no way out and it'll never kill you, so a horror movie come true, basically. I saw a TV show and it was about a lady who had terminal cancer. She had maybe a year left to live. It was sad and everyone was talking about how tough of a situation it was, which ya, that does suck and it would be sad to be in those shoes. But regardless, she was still happy and still doing her job as a school teacher. She was still having get-togethers with friends and family. She didn't have any problems living life, doing normal stuff, despite undergoing chemo and what not. It was terminal, though, so she'd die in a year or so.

But after seeing all that, I felt even more anxious about my situation 'cause here this person was, someone society considers the be-all and end-all of victims, or one of life's worst-case scenarios; someone they exalt in the namesake of tragedy; everyone mourning her situation and all, yet her life wasn't near as restrictive as mine. And she was gifted with a way out — death.

Not that I want to feel self-pity or want to think like that, but how is it possible not to? My situation is like being trapped in that chamber and you can't even be around people, live life, or exist in a meaningful way. I've lost relationships and hobbies, can't do anything fun barely, and on top of that, have this electricity tinnitus + severe hyperacusis. It's mental and physical anguish. And it won't kill me—ever. If it would, at least I would know relief is coming.

If, let's say, once reaching a certain severity point, tinnitus and hyperacusis were to cause the central nervous system to shut down or something, thereby ending your life, that would seem reasonable. The conditions would no longer seem so inhumane. But that's just make-believe and nature hasn't dictated such a solution. And when I take supplements or meds, I get permanent worsenings, and I can't afford to get any worse. So I feel like my 9 lives are up, yet they aren't 'cause it won't kill me — see the paradox? Reality is, with tinnitus and hyperacusis, you have endless lives, not 9, and you have endless opportunities to get worse, meaning it can always get worse, which seems unconscionable, but somehow it's true. I'm just realizing more and more how downright sadistic these conditions are. I feel like my mind and body are blown, but I dunno how not to go on. I feel so traumatized that I'm almost in a trance-like state-of-mind where all I can do is stare at the wall.

Not sure what to do. I've been praying for sufficient healing or death. I just feel like life's too unreasonable, like I'm no longer compatible with this world. Suicide or VAD are not options for me, so it feels truly hopeless. I'm just hoping a treatment or medication can come soon to help, which I'm trying to stay optimistic about.
Hi Jerad, I just read one of your more recent posts about dealing with the pain of tinnitus. Like you, the noise in my head is also a physical sensation. I have a high-pitched hissing that is NOT painful, but I also have a low-frequency hum that makes my ears and head vibrate. As I've mentioned in several posts, I've been dealing with this noise, off and on, for 26 years. The hum has gone away for periods of up to four years, so much so, that I don't even consider tinnitus an issue. The higher-pitched hissing, while annoying, doesn't interfere with my life like the humming. I had a relapse of the humming back on March 27 of this year, and it's taken me into that dark well of despair and dread again. And this is the longest it's stuck around since the late 90's when this whole thing started.

My doctor started me on a new antidepressant about a month ago, but it hasn't done me any good so far. Now he wants to add what's known as an adjunct drug to see if that helps. I'm reluctant to do it because of the potential side effects. Of course, none of these medications are for tinnitus; they're for depression and anxiety. I remember you mentioning in a post that you can't tolerate certain meds like benzos or ADs. I understand they're not for everyone. And frankly, I'm getting sick of taking them. If I didn't have health insurance through my job, I'd be screwed. I probably wouldn't be able to afford them unless I got some kind of government assistance.

I hope you're able to find some relief from your particular tinnitus symptoms. Maybe something as simple as Valium would help. I've taken it for years (for panic attacks), and it helps without becoming addictive.

I hope a treatment is found for our common enemy in your lifetime.

Craig
 

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