Hearing Loss and Severe Tinnitus — From Loving Life to Suicidal in 2 Months

Indeed, what did we do? As I mentioned in this thread a few times, I have been thoroughly reviewing my life and my sins and I have kept wondering if this is a punishment of sorts. If it was, it is vastly unjust. In the end it is just stupid coincidence and bad luck (and stupidity/ignorance) - I am absolutely convinced if it wasn't for the sinus infection, the acoustic trauma would not have been enough to cause such a devastation in my ears.

Thank you. I was quite impressed with your quick progress. And you have been dealing with cancer, too! Hope you will keep winning on all your fronts.

So we just returned from our 8 day vacation on a Caribbean island. I guess I should declare it was a success. Surely the best time I have had since the trauma - which occurred just 6 months ago (out of which last 4-5 months have been really bad).

We stayed in a cottage that was fairly isolated in the middle of rainforest on a dead end road accessible only by a 4x4 vehicle. The rainforest is incredible, especially at night. The noise actually was for the most part effective in masking my reactive tinnitus. Pretty much every evening I was able to forget I have tinnitus for at least a few hours. And that's without focusing on some activity. Even during the day, even though I always can hear the tinnitus over wind or waves at the beach, I could sort of forget or not pay attention to it. I guess that's what habituation is like?

Best of all I did not hear (or even see) one damn motorbike for the entire time there. Heard a small plane once. Truck with a backup beeper - once, just today. I honestly did not get angry or even irritated for the entire time there. Bliss, I suppose.

We were taking it easy - very unlike our typical vacation which were always extremely active. Basically sleep till 11 am. Brunch, hang around our cottage (with great ocean view), go to a beach, maybe snorkel (not much tinnitus to be heard with head under water!), then get back, wash up and hit a restaurant. Pretty much every restaurant we went to was semi-open, so noise wise they were manageable in my custom 26 dB earplugs. Then go back, hang around the cottage. My wife would go to sleep at a normal time, I'd stay up late playing online chess, mostly forgetting I have tinnitus...

I would even go as far as to say I could almost forget I have hyperacusis. Well, the restaurants would remind me of it, but overall it was not an issue there.

One interesting thing I noticed. My bad/worse ear (left) has clearly more damage. If I lay down with left ear up (right on the pillow), the rainforest/cicadas would sound weird with some frequencies missing and reactivity shooting up. Lying down with left on the pillow was actually better - tinnitus would be quieter and the external sound seemed more correct via right ear.

Had somewhat tough time on the return flight. The roar of the plane has become hard to bear after a couple of hours. The stupid brain just keeps cranking the gain, so there is no point of using double protection. I did not want to use noise-cancelling headphones even without audio - I am afraid of them now.

So overall this should be uplifting experience, right? Coming home brought me down. I am preparing to be assaulted by the noise starting tomorrow morning. Dark thoughts came back. My takeaway is that staying away from people and their noise really helps me. Unfortunately I certainly can't afford living on a tropical island. Living comfortably in places like that means big, big bucks. Maybe the "house in the woods" somewhere near will be doable, but still difficult. But I am still unsure if I will find the strength to continue. I really want to stay around for those 1-2 years to see if I will improve.

You see, turns out I always had issues with people, crowds and resulting sensory overload. My mom reminded me when was little, like 5 years old, I'd get overwhelmed and irritated by crowds. I just learned to overcome this. Heck, I lived in a crowded dorm in a big city by a busy four lane major route. I travelled and spent time in loud super crowded cities in China and Japan. I'd say dealing with noise and people started getting progressively harder over the last 10-15 years, but it went from say 5 to 15 on 1-100 scale. Tinnitus and hyperacusis suddenly took it to 99. I really have an incredibly hard time dealing with it.

Thank you everyone here for your support.

EDIT:

One thing I should add. My tinnitus/hyperacusis overall was unaffected by the trip. No particular spikes or such. Hyperacusis kinda ramps up from protection as mentioned, but seems to go back to its baseline fairly quickly.

Rainforest sounds from laptop speakers do not work remotely as well as the real thing. I probably should fire up my audiophile setup that I have not hooked up in the this house yet and play sounds on it.

 

After few days at home. It's bad.

I have no doubt by now, living with this for a few months, that hyperacusis is the worse monster of these two. The noises at and around home, particularly A/C, creaky floors (damn cheap PoS house), and of course motorbikes. They just kill me.

Folks on this forum tend to say hyperacusis usually improves within months, or sometimes within a year. But from what I am reading elsewhere, there is no guarantee that this will be the case. Given my high-frequency hearing loss, I am really afraid this is not a correctable condition.

My tinnitus itself fluctuates, sometime louder, sometimes quieter. I even had a quieter night two nights ago, almost as quiet as before. And it seems I am slowly developing the ability to ignore the sound.

My sleep is nuts again, can't sleep at night, then I sleep during the day. I sleep a lot in fact. I have some bad strange dreams again, they disturb me.

So this is still hell, I am "only" at 6 months but it feels like an eternity. Such a chunk of life lost to this nonsense. And maybe the rest of it is, as well. I try not to think about the past but when I do, I mourn and cry. All problems were so insignificant.

EDIT:

So I should expand on my prior post. I think I can ignore tinnitus now most of the time - if I am able to focus on something - maybe except the spikes upon waking up but these seem less loud and shorter now. It is there all the time, but I find it fucking boring by now. Or I try to tell my stupid brain it is so. It is just matter of finding something interesting to focus on, which remains hard for me.

Mostly because of my mental state, I lost interest in most things. I still have a hard time finding interest in watching a movie. All I do is go out for a coffee, for a walk in the woods, maybe have a conversation with a friend I made there (walks his dog regularly), drive my sports car a little bit, and (most of the time) play online chess. Maybe visit some friends (not many invitations these days, though some friends I thought forgot about me, reached out). That's about it.

It is the damn fear about the future, crippling regrets about what I have done, and the damn hyperacusis and external sounds that trigger me.

I honestly think if I could change my environment to limit hyperacusis triggers - like it was during the stay on the island - I could live. I am not sure yet if I can be productive working (that I will find out in due time).

I guess all I need is to win a lottery so I can move to the tropical island and retire Well, if I do, rest assured I also will start a foundation and create a non-profit sanatorium for severe hyperacusis/tinnitus sufferers. Quiet and relaxing place away from terror of sounds, only with the sounds of nature that could optionally be allowed in. This is all doable, concrete construction with soundproof windows. You all folks are invited. One can dream.

 

@gameover, I'm so sorry you're going through this, dude. Are you looking into medication for it yet? Epidiolex or CBD isolate? Are you thinking about getting compassionate use for XEN1101 when it comes out?

 

@gameover, I totally get how you feel, but you must keep reminding yourself that 6 months is nothing in comparison to the time it takes most folks to heal or habituate. The fact that you’re having some good days at this stage is a huge indicator of good things to come.

BTW, did you ever try to figure out the frequency (or frequencies) of your tinnitus?

Mine is between 8500 Hz and 12500 Hz. No wonder the hearing aids didn’t work as they only programmed it up to 8000 Hz. I’m going to try a new hearing aid soon that goes up to 12000 Hz bandwidth to see if it does anything.

Will let you know. Take care.

 

I'll be interested to know if the hearing aids help you. I tried my Father-In-Laws and it didn't change my tinnitus much but his were probably lower bandwidth.

 

I tried some really expensive custom hearing aids a few months ago. The audiologist programmed it to my mild hearing loss between 4000 and 8000 Hz. Thinking back, it probably didn’t work, because my tinnitus frequencies were way higher than those.

I will let you know how these new sets work. It’s going to be sometime in August before I get them.

Take care.

 

No @Michael Leigh and @Jammer, I am posting simply to notify you that you are absolutely not worth any serious attention. You have both toxified this site to a veritably disgusting degree. Shame on you both.

 

I think about winning the lotto all the time since getting tinnitus lol. I would build a house in the woods and spend all my time and energy on developing businesses for long-term funding towards medical research.

 

You're the one being toxic. Stop bullying @Michael Leigh.

 

Maybe, it is really, really hard. The damn thing fluctuates and hyperacusis is a real killer. It really robs me of whatever energy I have left.

Not sure of frequency. It's not a single steady tone in my case. But I also contacted an audiologist to try the hearing aids again that go to above 10 kHz. Might as well try for an extended period of time.

 

But you posting constantly ridiculing other forum members for months on end (probably years) isn’t being toxic? Your lack of self awareness is astounding. How you’ve managed to get away with it for so long is incredible.

Apologies for this @gameover.

 

Holy hell. I got out of my car on the side of the highway with 32 NRR protection and am paying a hefty price. Wish I could withstand an MRI machine.

 

You and me both.

 

@gameover, keep going. You have made amazing strides and, as others have said, it is the early days. Compare now to your first posts and I hope and pray for you that another 6 months brings even more progress.

 

When you say HBOT caused bad tinnitus, was it because of the sound or the pressure?

 

Pressure 100%. I was told earplugs would be fine (they are not, at all).

That or the pure oxygen as well, I got to 2.5 ATM and had what could be considered an auditory seizure.

I would not suggest it. Not fun to go through. Probably the closest I'd been to killing myself had I not been too terrified constantly to do so being overwhelmed by... truly a circus of sound.

 

Serotonin is a neurotransmitter protein. It's preposterous to even think it causes inner ear cell death.

 

Agreed, but I believe it might increase the potential intensity of one's tinnitus.

 

Agree. Some people get tinnitus causing and ototoxic mixed up, which is ludicrous.

 

Did you notice you were having the seizure during the treatment or was it afterwards? What does that entail actually? Are you still experiencing the same level of tinnitus as when it started?

 

It's changed a lot. Some sounds faded but not all. Clonazepam helped a ton when it happened, it cut the volume by 90%.

It happened in the chamber, and didn't go away until I decompressed and had Clonazepam. That was probably several hours later.

It sounds like a slow ramping up of random static and sounds you haven't heard before, then an explosion of all kinds of sound effects throughout your entire head, and it doesn't stop.

Pressure and O2 was being held constant at 2.5ATM 100% O2 when it occurred. Probably about 30 seconds once I got there.

It's probably what hell is.

 

How is your tinnitus now? I already asked that, but just wondering how you’re doing and where you’re at with it all?

Best regards.

 

I had pretty bad hyperacusis back in January 2021 that had virtually gone by the end of that same year, so it can happen. The tinnitus unfortunately is still going, but much easier to cope with now that the hyperacusis has resolved. I hope things get better for you.

Disappointed to read the arguing between members. If there is someone whose posts annoy you, then block that person rather than argue with them. It's a support forum so let's help each other out and be respectful to those that are having a difficult time of it.

 

Hello Everyone. I was away for a month. Well, I was still reading Tinnitus Talk but not so fervently like before. So at first I had a few, maybe like even 2-3 actually pretty good weeks. I am not sure what exactly happened, but the tinnitus on average became quieter. My reaction also hardened. I began to live somewhat more normally, watching movies, driving around, taking care of some things. Playing a lot of chess. I even started listening to music in my car, enjoying it first time since this started. I began thinking and planning return to work. I think I even smiled once or twice. And laughed once, seemingly finding restored hope and will to live.

My sleep still sucked but around a week or so ago I also started to turn this around after a few "skip the whole night" attempts. Not perfect, but I'd crash around 10 pm and wake up around 5 am. Sometimes even sleep another hour or two. Not my normal pattern, but vastly better than going to sleep at 9 am and waking up at 10 pm.

My hyperacusis seems much improved, not cured, but e.g., I can tolerate the boiling kettle now. Far less anger and frustration towards sounds like motorbikes. I am like not angry almost at all anymore. Driving without issues or getting in trouble. This is big, because anger was crushing me.

Unfortunately, a few days ago my tinnitus has become worse on average without any obvious trigger and cause. It still fluctuates, sometimes lower, but tends to stay high and loud during the day (of course after nearly obligatory monster spike after waking up). Even more worrisome, I am starting to have a burning sensation in my right ear (the better ear, my tinnitus is mostly in the left) more often. Not painful (yet?). But feels like heat or mild itching inside my ear canal. It scares me. Furthermore - one day, while wearing foam earplugs I noticed faint pulsatile tinnitus in my right ear. Very, very faint. I noticed it the night before without earplugs, but did not realize what it was. I have not noticed it since, but something is going on and it does not appear too good.

To top it off, my "friend" told me today he does not wish to hear about tinnitus or in fact talk to me anymore (well, he will take an "extended break"). I "only take and not give" and he cannot deal with it anymore. Very sad, he has many serious health problems himself (and talks about them) but apparently the way I talk about mine is not appropriate and hurtful to him. That's apparently how it goes. When I was healthy and happy and I was there to hear about his issues.

Surely there is something in me now that puts people off. Another friend I've known for 30 years got offended over the phone, when I mentioned that the acne drug his kid is taking can cause tinnitus. I did not want to scare him, just mentioned out of concern, learning what these drugs can do (see @SarahMLFlemmer's case). I was told I do not care about his concerns! So I have no friends any more. Essentially none. One former coworker of mine still reaches out occasionally. Bless him.

My wife is steadfast in her support and love. She is a true angel and if there is heaven I really do hope she will go straight in there.

Thank you for reading my update. I was hoping for a more positive one, I even fantasized that one day I might be writing a "success story". This day isn't close to that sadly. But hopefully it is a spike/down period and it will improve again.

I hope most of you are doing better.

 

Thanks for this update, @gameover. I was expecting you to post some good news as you exhibited all the signs of a sufferer that is likely to heal well in due course.

My simple advice to you is; don't push it.

I think your sudden surge to above average tinnitus may be due to the accumulation of noise exposure from being more carefree.

Take your time and be patient with your ears recovering. There are no medals for 'surviving' playing music or living life as if you don't have tinnitus.

The more time you take, the more careful you are, the less 'risky' the exposure, the better your ears will heal and likely more robustly.

I think you already know you're going to come out well, just a bit more care will ensure this.

 

@gameover, like you, I’ve been limiting my time on Tinnitus Talk, which has unfortunately made me pretty terrible at replying to everyone so I apologise.

I had been wondering how you’re getting on, so I’m delighted to read this update and see the progress you’ve been making. Keep it up brother and I hope things continue to go the way they are.

 

I appreciate the validation and update.

 

Thank you again @Jupiterman for encouragement and the reminder to take it easy. I am taking it rather easy, and certainly do not feel like pushing it or proving anything. I went to a restaurant few times (we go at odd hours and asked for a seat in an empty backroom, so it makes it tolerable), I went to a store in a mall to get my phone fixed once (the music and overall noise was rather tiresome), I checked a couple of houses for sale, I went to a car place, etc. So nothing crazy and nothing loud. I gave up on sound enrichment, especially at night, as it has been somewhat annoying and constantly reminding me about tinnitus. I use musician earplugs in the car and in any uncontrolled setting. I do not wear protection at home or in the woods during walks, pretty much like I have been doing for a while. As mentioned I can tolerate more house sounds better.

As we all know, it is hard to understand and control this condition, I know for sure overprotecting was increasing hyperacusis, at least temporarily.

I was preparing to go back to work, which most likely would mean going a few days a week in person to the office. I dread that. Full time remote work might be harder to get approval for these days. I also have an option of continuing my leave, which is most likely what I am going to do (if it continues to get approved). I guess this increases the chances of improvement in whatever healing process might be taking place. While distractions of work could be helpful, the stress may not be (and especially exposure to loud sounds if I were to go to the office). Hard choice to make. I will see what happens.

P.S.

Going back to this sentence. I really do not know. I want to believe that, and I sort of started to during my better period. And I keep going to the success stories here. From members like: @Jason C, @jjflyman, @Vii, @Tom Cnyc, @jacob21. There are far and few between, but still giving a lot of hope.

But the damn thing roars and fills my head so much of the time. What is still the consistent pattern, talking to people especially when outside almost erases my tinnitus. Just this afternoon I met, after a few weeks of a break, my "woods walking buddy" - let's call him Bob. I spent an hour walking and chatting with Bob, and guess what, the tinnitus seemed virtually is gone. Now I am back at home, and the damn thing just fills up my head, and just can't shake it away, even when playing chess. What a wretched condition. The conversations being such a great distraction is the thing that makes me think about resuming working. But then my work is demanding, requires concentration and mental capacity and I do not think I have that (plus the noise exposure, etc).

By the way, I keep seeing the pastoral therapist - once or twice a week. He listens and tells me some encouraging things. He keeps trying trance on me, though that does not seem to work at all. But I appreciate seeing and talking to him. It certainly helps escape the tinnitus. And I appreciate him even more after being dumped by my friends (well, he gets paid for listening to me, but still).

Good to hear from you @Hardwell! I was also wondering how you were coping seeing you were taking a break from here as well. Hope you are better, too, and if not, that you soon will be.

And yeah, I am very "tentatively" better, with some setbacks but as many have told us here, that's par for the course.

I will admit I am sad about the situation with friends, especially the yesterday's lecture of how a bad person I am. Getting an extra punch in this state does not help to keep going. But then I am blessed with my wife's love and that's a gift not everyone has, so I am very thankful for that. And that's the reason alone to keep going.

Again, all the best to you.

 

Good to see you have been able to get at least some of your life back and do things you probably thought you may not.

When you said that your hyperacusis was made worse by hearing protection, what element of your hyperacusis do you mean? Reactivity, sound sensitivity, loudness etc.?

 

Loudness. Sounds appeared louder during the time I was overprotecting. This was also the time when a nap spiked not only the tinnitus but also the hyperacusis. The hyperacusis still fluctuates for me, but in fairly a narrow band. It is hard to describe or measure it. But I'd say loudness is ~70-80% normal, i.e. if things were ~20-30% quieter than they could be considered normal sounding. Before, during the worst spikes, some sounds seemed to be easily twice if not more too loud.

It was weird, if you go back to my older posts in this thread, you will read the hyperacusis was shooting up after a nap. One time, it was so insanely loud, and so bad I had a real panic attack. I think the only real bad during the entire ordeal. I had anxiety attacks, but not panic where I just completely lost it.