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

I was going to wait with this update, since it has been only a few days and it may be premature to share it.

But - I decided, efff it, I need to increase exposure to combat hyperacusis. I read and re-read a post proposing that central sensitization can be behind some hyperacusis and even noxacusis cases. I decided it's either this, or I am screwed anyway, so I am going to bet on central sensitization being also the culprit in my case. I can't wait for this to "heal", I already have for too many months.

Well, this is not only about exposure but actively telling your brain the experiences are positive. So yeah, I sat through listening to fish frying on a pan telling myself it's going to be an awesome meal. When I heard a truck or plane, I told (loudly) myself "it's just a truck/plane, no worries". I listened to music for an hour, telling myself "these are nice tunes, it can do no harm". I went to open the fridge not exactly quietly and told myself "I am going to have a nice snack!". I could listen again to boiling water in the kettle, telling myself "I am going to drink this tasty tea!". This sounds idiotic, but if our brains are so primitive in that regard, they deserve to be treated like complete morons.

Things are very early, episodes of brief (and still mild) noxacusis show up still not infrequently, but it seems it can work. I am observing reduction in hyperacusis loudness and increase in tolerance. Tinnitus is still there, of course, fluctuating, but sometimes towards quieter & tonal ringing kind vs. the hiss/whoosh that's often deafening. Last three days I woke up to quieter tinnitus, too.

Oh, I also forced myself to wear a night guard. I never had (or never was aware) of any TMJ problems, but my dentist says I grind or at least clench so I guess I need to believe him. I actually caught myself clenching due to stress a few times.

Wish me luck. Now I am going to log off. I have to. It is part of the therapy. I will report back in a month or two.

 

I can relate with your plan to establish positive associations with the sounds you’re hearing when around the house. It helped with desensitization and regaining sound tolerance. It also definitely helped overcome phonophobia as well. Now, anytime an ambulance or plane flies near my home, I don’t even cover my ears anymore. It doesn’t alarm or bother me like before.

Hyperacusis seems to stabilize over time for most people. Predicting the timing on when that occurs is the difficult part, but I’m sure you’ll get there. It was long and non-linear process for me. Took 2 years.

Good luck.

 

Staying away from the forum is something I am still not quite capable of doing.

My hyperacusis continues to be stable/improved, not cured, but 80-85% there I think, best since March/April. I am still having a hard time mustering positive thoughts when hearing motorbikes, etc, but the tolerance is up, I mean the sounds do not appear as loud as before, so this brain amplification idea is real. There must be multiple mechanisms at play, like the immediate one where protection amps the sounds in the very short term (minutes/hours), then the weird spikes after waking up from naps, and then there is what I guess can be described as the central sensitization that can persist for weeks or months evidently due to the emotional attitude towards sounds. I could not believe this would be the case, but seeing the change, I have to now. I honestly do not think this is a coincidence or just the passage of time.

My "fleeting noxacusis" seems to have backed off. It did not happen yesterday or today. Given the improvements, I decided to forgo Clomipramine, too risky just for attacking depression.

My tinnitus ranges from very severe after waking up to moderate during the day, perhaps even mild (!) at moments later in the day/night. Overall it is an unstable situation but perhaps improved. I use sound enrichment, varying it from a water fountain, crickets playing on the phone, to sitting next to a refrigerator.

Of course only days have passed so this is subject to change. My psyche remains extremely fragile and bad thoughts are creeping in. This is silly because the improvements should be giving me hope and lifting me up. My sleep is messed up, I am sleeping late during the day. Extremely hard to get up.

I ditched the pastoral therapist. Only at the end of last session he told me his wife tested positive with COVID-19 and ended up in hospital with pneumonia the day before. If I get COVID-19, it is likely truly game over. No point in regurgitating my misery with the guy anymore, everything I could tell him I guess I did. He is also a certified hypnotist, but hypnosis does not work on me, and especially not in his loud office by a busy highway.

I am going to resume work remotely soon. I will see how that goes. Maybe as @Buddy123 suggests, it will pull me out of this hole of endless despair. My goal is still just trying to survive a little bit longer. And to think I went from the grand plans and dreams I had only 8 months ago to this...

 

Life happens when you're busy making plans. Never fails to derail that which is best laid.

 

Hyperacusis from acoustic trauma usually fades within 12 months. So your improvement is great. One less problem to deal with. Good idea to start working as it will distract the brain from focusing on tinnitus. After a while the brain will sense that tinnitus isn't a mortal threat. With that it will learn to fade the ringing out of consciousness and you will have long stretches when you aren't aware of the ringing. The turnaround will come at some point. Be patient and Godspeed for your recovery.

 

Thank you, @billie48. Still waiting for the turnaround...

Time for an update. I had some better days. I indeed resumed working. Working remotely, firing at fraction of cylinders, not my normal self. Hard to think and concentrate, but here and there I can do few things. When busy talking, tinnitus fades away, as usual. But I also generally had some days of lower tinnitus, with wake-up spikes not as severe and/or shorter lasting.

I had a really bad day today, sleepless night, then slept most of the day, and now another sleepless night. Bad weather seems to be reliably linked to worse tinnitus for me. I always had a slight headache/tiredness related to bad weather, now I "hear it".

My hyperacusis is indeed better, it doesn't seem to be able to improve further, but it's 80% there. Sounds are still louder than normal, but I can tolerate more, including the dreaded electric kettle. I went to an indoor house party the other weekend. Way too much. I had to stay away from people in a separate room, just can't tolerate people yelling over themselves. There wasn't even music. I am normally a social person, can strike a conversation with nearly anyone, but now I look like some weirdo.

"Fleeting noxacusis," as I describe it, is still present, but relatively infrequent. A couple of times a day, sometimes not at all. Interestingly I don't find the pain that bothersome, well, especially because it quickly goes away. Maybe I just don't find the pain as distressing as the wretched tinnitus.

My tinnitus itself, varies from severe to mild at times. Right this moment it is somewhat mild, bit of hiss/static of old TV. Sometimes it's ringing, sometimes it is eeee, it fluctuates quite a bit. Notably less reactive than even 2 months ago. Car rides still spike it some, though I drive very little lately.

I still think about ending it on a bad day like today. I just do. I so hate that. I really wasn't this kind of person. Hardly anything could bring me down, really. Things were going well for me, but then I was convinced if I ran into issues like financial disaster, job loss, etc, I'd just pick myself up. But then who knows. Maybe I did not know myself as much as I thought.

A story from this week. So turns out the school my kid goes to, does this day where they "celebrate" school by going into gym and just shouting and going crazy. This is insane, irresponsible and dangerous. I forgot about it, they did it last year, that was before my injury, I remember my kid complaining about it. This year, my kid refused to participate. Good! I need to have a word with the school's principal. They are flat out harming kids. If the kids don't suffer immediate consequences, they will in due time. I just can't wrap my head around how reckless and ignorant people are about noise. So was I. I knew loud sounds are bad. If I only knew the full story.

Oh, I should mention I have been taking Nicotinamide Riboside (Tru Niagen) and Resveratrol for the past 3 weeks. I have no idea whether they have any effect, probably not, but don't seem to hurt. I also bought Red Light Man Mini Combo but I think it spikes me, so I gave up on it after trying it maybe 3 times.

P.S. This weekend has been so horrid I am really closer than ever to ending it. I just do not care about anything anymore. I am close to saying I do not care about my wife, my children, anything. I just want to be done with this torture.

 

It sucks that you are suffering and wanting death. I understand the reasons for it and I've been in your shoes.

What makes it more difficult is going from an idyllic, almost perfect life to one with supreme challenges. Having had limited life hardships often creates an expectation that nothing bad will continue to happen and a sweet life will continue. Many will never see these life difficulties and, consequently, never develop a rugged bark that can handle drastic change and the shit that comes with it. Your tinnitus is building bark and it is painful.

I say give yourself at least two years before you make a decision you can't undo.

 

You are right, of course. I am full of despair but the truth is I am still fighting. I was thinking about ordering items that would allow me depart, but I have not. I am still holding out hope for better days. I have many reasons to live. My angel wife and my children. But I am such a wreck and burden.

I am very shaken today by the confirmation of @Merlin L passing away. It was not too long ago she was posting in this very thread. She was a kind soul and a smart, resolute person, one could easily tell. Full of life. Made an innocent but tragic mistake of firing a gun without protection. Took one shot. We do not know the details of her passing away, so we should not speculate, but it is hard not to think there isn't a connection to the severe tinnitus/hyperacusis she has been dealing with for only like 7 months.

@Jammer, you are a strong one. You could not keep working, but in the end you chose life for the sake of your family. I want to do no less, I hope I will be able to.

 

I am deeply shocked by @Merlin L's death. It has now been 8 months since the onset of my tinnitus and hyperacusis. I have often thought about suicide and in my desperation I even contacted Pegasos. Tinnitus is so unreal. I have never felt so terrible and I have never been so stunned by how little public and medical attention such a life-destroying impairment receives. I fight every day. Honestly, I don't know why. But I don't want to give up. We must persevere to be heard and seen and to perhaps one day be saved - whether through medical help or our own mental triumph over this spawn of the devil.

To stay with the imagery of my name: I feel like I'm in a stalemate. I cannot move forward or back and remain trapped in a space between living and dying. My current existence is a draw, so to speak. I try to keep the tinnitus at bay so as not to get checkmated myself.

I'd better stop at this point, I don't want to hijack this thread.

 

In her obituary it said she had an accident and died, but someone else (third hand) here said it was a brain aneurysm.

It apparently wasn't suicide in any case.

RIP Merlin.

 

Agreed. Definitely very sad. Tinnitus and hyperacusis can really take you down and tear you down physically over time.

 

But her death had nothing to do with tinnitus.

 

Tinnitus feels like diabetes to me, which I also have. You don't die from it, you die from the complications of it. Difference is there are effective treatments for diabetes... May we all stay strong!

 

I think this is the case for most people, especially now at this time, with Susan Shore's device and the potassium channel openers on the horizon, it would be cruel to quit and there be a meaningful long lasting treatment come out shortly after.

 

The irony and cruelty of this condition for me is hard to describe. I am consistently worst after waking up. Yet, sleeping is the only true escape. It is as if the body was telling me to stop ever waking up.

So I tried to have a good day today. I told myself "don't give up"! Last night I slept poorly, but slept maybe 3 hours. I woke up at 5 am, so I thought ok, I will stay up and try to fix my sleep schedule. I woke up to loud tinnitus, but took a shower, which reduced the tinnitus to moderate pretty quickly. I then played some chess and had breakfast. I chatted with my wife for quite a while, then read some news. I started my work day with a meeting, early lunch, took it easy, then had couple more meetings. The tinnitus I guess went down to mild for most of the time. Around 5 pm I went out for coffee and a walk in the woods, a good 5 mile walk. I came back home, lied down, and the tinnitus increased. I tried to read a bit, but unfortunately crashed. When my wife woke me up later, probably around 8 pm, my head was exploding from catastrophic tinnitus. When this happens, I just cannot get up. Cannot. No way. But insanely, I am usually able to fall asleep to escape it quickly. There were probably two or three moments when I woke up later through the evening, heard the monster, and thought I'd rather die... or sleep. Keep sleeping I did. Now little after 2 am, I woke up finally. The tinnitus is loud, but bearable. I am typing this, not sure for what purpose, it is boring in the end.

This is a struggle beyond belief. Each of those battles makes me wonder for how long can I do this?

 

Exactly this. We are surely at an inflection point whereby in the next five years there is very likely going to be some form of treatment available to most. Until then we've got to take it one day at time a time and put one foot in front of the other. I know first hand how hard that is and that's why we need to keep each other afloat until such time comes.

 

Five years... Five years in which the people around me move on and I remain trapped like a prisoner in my small radius of life. Truly a nightmare.

 

I am confused with the time intervals you have specified in your separate posts on this thread?

 

He is referring to the mythical 5 years before treatments will be available. It has been 5 years for the past 15 years or more it seems when you read old posts. It may as well be not in our lifetime, nobody knows.

 

Correct. As I said, I don't want to hijack this thread and should create my own one. It's just that I can relate to a lot of thoughts and feelings of @gameover. That's why I barged in here.

 

As I’m sat with severely reactive tinnitus that has effectively ruined all aspects of my life, I can completely appreciate and relate. However, if we look at this logically, both the Shore device and the potassium channel moderators SHOULD well be out within that five year framework, should they not?

 

Having been in the medical device industry for over 30 years, one can't anticipate the future with any degree if certainty. But one can still hope.

 

Yes they should.

 

Maybe. We do not know if the potassium channel moderators will help with tinnitus, or if they will still have some dangerous side effects. With the Shore device, I am really taken aback by that group's approach to commercialization. Basically they do not instill any confidence in me that they are able to pull it off. Maybe Neuromod will come with Lenire v.2 that will be more like the Shore device, based on Dr. Lim's research. But one should question their strategy - release a scam device and hurt people in the process, only to follow up with something effective?

 

Sounds like the "fuck it, ship it" attitude of the founders of Juul. Shame.

 

I decided to get out of the damn bed today and do something. I went on a longer road trip to check a house in boonies on a decent acreage. Over 1 hour one way. Driving aggravates me but I could deal with it. I took our quieter vehicle. I'd rather not drive. And I loved driving.

I spent almost 1.5 hours at the house. Being busy checking out the house, chatting with the agent, honest to God I forgot I have tinnitus for the entire stay there. And I actually took time to listen to the noise of the forced air system (surprisingly silent) as well as surroundings. It was generally quiet, no road noise at all. I heard a chainsaw in a distance when outside.

Only when we got back into the car and started driving, I began hearing the tinnitus again. So weird. So yes, the brain can tune it out even for a longer period of time...

 

Yahoo! Limited success is still success.

 

John Lennon!

 

That's right...

I added the second sentence.

 

Hey @gameover, I just wanted to chime and and give you some support. I developed tinnitus in July and the thing I think about is this. I'm lucky to have gotten this at a time when a treatment actually exists. It's coming. I only follow the Susan Shore thread because everything else doesn't serve me. I do have desperate thoughts, but knowing this condition is going to be gone in 2 years is what gives me all the strength I need. The treatment could come sooner, but it won't be longer than 2 years. Your tinnitus may even fade on its own before that.

When you think about how much time you have to live and to see your kids grow up. My daughter will only be 5 when my tinnitus will finally be treated. Think of all the great things that will happen through the rest of your life. Two years is nothing to wait for a lifetime. In 5 years you may not even remember this period in your life. And by then there will be better treatments, including a potential cure.

So keep, keeping on.