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

I like your advice, but I caution you about giving your tinnitus rating numbers, because I used to do it too and fell into the trap of accessing my tinnitus "score".

I stopped giving my tinnitus a score once I realized that there is no upper limit to tinnitus.

Oh how I wish to have that "10" level that I had 7 years ago; my life would be so much easier.

 

I agree with you about scores. Looking back, the first six months of catastrophic tinnitus and hyperacusis would probably be 20 on the scale of 1 to 10 I use today. Maybe the words catastrophic, severe, moderate and mild are more accurate?

 

Buddhist fable about achieving habituation (will this help anyone?):

"An inquisitive python wanders into a carpenter's shop. The carpenter screams and dashes out, dropping a hand saw on the floor in his haste. The python, curious, slithers up to the saw. One of the saw's teeth snags onto the snake and cuts it. Alarmed, the python goes on the offensive and binds itself around the threat. The harder the snake squeezes, the more pain it feels, and so the tighter it tries to choke the saw, desperate to extinguish its enemy. In the end, the python dies from its wounds."

READ:
The python: the tinnitus sufferer
The saw: the misery of tinnitus
The self-defeating, overpowering, black rage at having tinnitus: the python's tightening around the saw.

 

I say, listen to your body. I started with EXTREME hyperacusis and tinnitus. I watered plants with a garden hose as this was one of the few sounds I found soothing, took walks on a quiet street, and sometimes if I could manage it, took a walk in the woods. I also sat on my porch about 5 hours a day playing the same mellow guitar songs over and over. Luckily I had remembered enough guitar from college that I was able to take it up again. This was kind of a meditative healing process, singing Leonard Cohen songs like Suzanne 5 times in a row.

So there was some sound input but on a very muted level. I also did limited background sound with an ocean machine and listening to mellow folk music, saw an acupuncturist, and did Ayurvedic self-treatment. I was totally unable to tolerate a computer screen. Thirty seconds and screaming tinnitus would turn into grim reaper is here for you right now tinnitus.

The turn around moment (once the hyperacusis had diminished somewhat - about 5 months time) was getting white/pink noise devices. Before that, crickets sounded like 747s, the CD player electronics were louder than the music, a neighbor's air conditioner seemed like a Mac Truck coming through my window.

Even a year or two on, I had an incident where an ambulance started its siren just as it passed me in the street. I was about 30 feet from my craniosacral practitioner's office. My sight went dark. I staggered to her office door and collapsed on the carpet. Admittedly, this was a far louder than normal sound, but I would say, take things slowly in terms of increased sound exposure.

 

A short update. I have been using more sound enrichment. In the evening when my tinnitus is low I can say it is almost successfully masking it. The sound is there but kinda blends together. Objectively this is an improvement, previously my tinnitus was basically unmaskable, except in shower (and even then not always). Maybe the reactivity has been reduced some?

I have also been using sound enrichment during the sleep. Not sure if it is helping since I still wake up with blaring tinnitus. Hyperacusis has also been reduced. Bad weather means fewer motorbikes, but overall it seems I am tolerating sounds better. Protecting less.

Despite the seemingly encouraging news, I seem more depressed than ever. Getting out of bed and getting anything done is an even bigger struggle now. Less anxiety & anger again, but again it is probably because I am so tired. Still ruminating, projecting, etc.

Keep thinking about antidepressants, but just can't. Zoloft horror stories about worsening tinnitus (plus additional side effects) just scare me. And Remeron can apparently make hyperacusis worse in some people. I just would not be able to accept any additional worsening from meds. I know it will break the camel's back, which is barely holding.

 

I am pushing it further, wonder if I'll regret it. But my hyperacusis and even tinnitus has been improving somewhat.

I drove my convertible with foam earplugs and roof up. But that made the hyperacusis worse for a bit. It was really noticeable as soon as I got out of the car. Or even during the drive I did not feel quite isolated from the noises - the stupid brain just keeps cranking up the gain, so annoying. I suppose the car, while somewhat loud, is not that loud to warrant use of foam earplugs.

So on the way back drove with roof down and musician earplugs (on side roads though, highway would be too loud). Then even without earplugs for ten minutes.

I went into a not so quiet coffee shop without earplugs. I sat down outside on a busy street without earplugs. I let a loud truck drive by and did not cover my ears. I listened to jackhammers (in a distance) without earplugs. I did not like those sounds, but had no discomfort nor perceived extra loudness much.

I still hate my situation, despite improving. I am still deeply depressed. I have this feeling now even if tinnitus/hyperacusis disappeared I'd be still deeply scarred and continue to be traumatized. Maybe in time it would lessen. I don't know, I would need like Jesus to appear and assure me my hearing is back to how it was to feel normal again. That ain't happening, I am afraid.

I know it sounds crazy, I should cling to these signs of improvements, and start thinking positively... there is some of that but still clouded by the feeling of dread, despair and regret. If this shit disappears for me it would be truly a miracle, but given the improvements it feels like it is not impossible.

 

You are definitely healing with these improvements!

Now, this is a most vulnerable state for a tinnitus/hyperacusis sufferer. After weeks and months of tinnitus torment, can you hold your nerve and be cautious with sound exposure to promote further healing?

Exposing to open top cars and jack hammers ain't a worthwhile badge of honour to risk your gains for.

What about your notion of spending time in a quiet rented retreat for a while? What about just playing it safe and predominantly staying at home for weeks, perhaps even months and watch your gains mount up? Would you regret doing that if your tinnitus completely faded?

You already know that you are a strong healer and your ears are proving that to you. But your healing mechanisms will need time to complete these delicate repairs and only you can provide that hood of protection by your careful and safe actions.

Let your body finish what it's starting, don't interrupt it, risking further damage.

Don't get overzealous in trying to prove your ears are 'good-to-go', unless you want to risk your tinnitus and hyperacusis getting worse.

The more damage you do, the more difficult the repair process becomes.

Like all of us here; you have tinnitus and will need to be careful with your ears for the rest of your life. That, for the lucky ones, could mean just wearing foam earplugs occasionally: for the unlucky ones, well, I think of @Brian Newman.

 

@gameover, absolutely love to read that brother, it sounds like you are getting real improvement and I’m genuinely over the moon for you.

I’m trying to follow your footsteps and use protection less. I went for a drive ‘with earplugs,’ then for a walk in the forest for an hour without earplugs. Unfortunately I spiked again from it but does that mean I just have to avoid everything forever? Or are my ears still really sensitive from all the protecting. I have spent at least 23 hours a day, every day, for the last two months in some form of protection.

 

A couple of weeks ago you were considering suicide, now that you are seeing improvements, you are risking it all again? Your ears will be forever more fragile than other people's. Don't be a fool in this stage of your recovery, or ever in future.

 

@Jupiterman, @Aussie Lea, thank you for the warnings.

Not really my intention to prove anything, or push through. Maybe I am acting impulsively. I don't think I exposed myself to dangerous sound levels, but I realize the line is thin.

I really see that correlation of protection and hyperacusis level. But correlation is not necessarily causation. Like after the midday trip today I came home, I was tired (I did not sleep enough last night), and I went to bed. I woke up, of course, with increased tinnitus (more so) and hyperacusis (slightly). I just came back from a 1 hour walk in the woods. The increases seem to persist. Is it the nap or is it the earlier exposure? Who knows.

I realize the futility of tracking/reporting on daily fluctuations. I only haven been protecting less and using sound enrichment for barely over a week. So I may be jumping to conclusions here.

And it was like 3 weeks ago when I had that significant hyperacusis setback. It was similar - extra exposure followed by a nap, followed by a setback. The difference was using hearing protection during the nap then.

This is a cursed condition. Almost impossible to reason what helps, what hurts, but you are right - erring on the cautious side is definitely recommended.

Thanks @Hardwell. I hope you will see some improvements, too. Don't necessarily follow my steps, I can't be sure I know what I am doing.

 

I have a pretty bad day today. When I woke up, the tinnitus wasn't terrible. But I kept sleeping/napping. And it was bad or worse every time I woke up. I am not sure if it was yesterday's exposure or the napping.

I am too tired of this, I really do not want this life anymore.

 

That’s how it works I’m afraid, the progress is not linear as most people will tell you. It’s easy to be upbeat and more optimistic when you’re having a good tinnitus day. But the real progress is made with how you deal with your bad tinnitus days.

 

I feel exactly the same way. I fluctuate between sadness and anger. Hoping something will help us soon. Besides Dr. Shore's device (hoping it is effective), is there anything we can look forward to?

 

Yeah. It is maybe not so bad today again. Eventually I took a shower, got out of the bed for a bit and it's better, not lowest volume, but quite low. It is just the crippling depression that makes me hate myself and my life now. How I wish I had my old life back. The irony is, they will tell you, you need to claw it back, regardless of the noise in your head...

Seems like you are a recent case. I hope you'll get better.

 

We are very much at identical parts in our ‘journey.’ The depression is deeply set in and even a complete removal of this noise wouldn’t get me out of this hole straight away. Or would it?

My biggest fear is of worsening this shit even further, as horrible as it is right now. I could somewhat go about life with some happiness if I knew it wouldn’t get any worse.

In regards to your earlier post and napping, I’ve had the same experiences. Short bursts of sleep seem to raise the volume of tinnitus briefly.

 

@gameover, you are learning the ropes of being a tinnitus sufferer. Your journey will teach you what you can do and expect.

I learned that my tinnitus would often present me with a "honeymoon" for a time after noise exposure and then rebound much higher and spike. It would then settle down, sometimes at a higher nominal level.

Be cautious and listen to your elder tinnitus forum members. I think you are playing with fire.

 

More like walking a thin rope. I am at the edge, I will not take further permanent worsening. Fuck it. It either improves, or I will check out. I have no desire to live like this for too long. And I mean it, at some point a hard decision will have to be made. Given what it did to me, to my life, it is not worth it. I am not the same person I was. I abhor myself. I do not belong to this world. Just barely still. I hate people and their loud, selfish, ignorant ways.

I do not find life through suffering worth living. Others might. At least not that kind. Different kinds of suffering? Who knows, maybe I could deal with those. Metallic sound tormenting me inside my head? No, thanks. I guess I am that selfish. I am weak so of course I am afraid of painful death and I fear the unknown. While I am more inclined to think it's nothingness that awaits us, one cannot be sure, obviously. But whatever, I can see a breaking point. Where it is I do not know still. If only pills of painless death were easily available...

 

The phenomenon of getting louder tinnitus after a nap is very common from tinnitus sufferers. It has been called the awakening response. It is the brain's tendency to check up or monitor our vital signs upon waking up. Unfortunately at the new stage of tinnitus, the brain erroneously thinks tinnitus is a vital sign so it searches for it and may amplify it temporarily upon waking to make sure it is there.

 

One other explanation I read it is related to cortisol levels, which are highest upon waking up and go down over the course of the day.

What is maddening about this condition that even with the same etiology (noise/acoustic trauma induced), the symptoms and ways to manage it may be so different. Some people get it loud in the morning, some get it quietest in the morning. Some people get better by listening to tinnitus, some by using sound enrichment, etc, etc, ...

 

Quiet night. Funny, when I stick my finger in my left ear for a bit, then pull it out somewhat slowly, kinda creating vacuum, I hear true silence for like 5 seconds followed by a very faint but then increasing ringing.

It was also true in the beginning, like 1 month after trauma, and I think it lasted longer. Actually back then it was making me feel like if the hearing was perfectly normal. I was so hopeful back then it will resolve itself.

I suppose given the improvements over the last few days, I should declare my tinnitus to be in mostly the moderate range again, with periods of being mild...

Eh, I realize I am still/again all over the place... reporting improvements, yet talking about killing myself two posts up. I am a mess. But if this stopped being reactive and stayed at the level it is this very moment, I can see coming back to life...

 

That'll work for the majority of cases.

But if you've got hyperacusis, reactivity, multi-noises and above moderate level tinnitus, then by clawing back your life, you'll not only find it extremely difficult (mentally and physically), but you could make things worse.

The 'experts' have two main shortfalls in this area:

1) They don't know how to diagnose a serious case.

2) They don't know how to treat a severe case.

So they end up treating all cases with a 'one-size-fits-all' approach. Terrible for serious cases (the minority) but will work with everyone else.

There isn’t enough of us, or indeed enough motivation in the medical profession, to research appropriate treatments for severe cases. It's a lot easier for them just to say it's our (anxiety) problem that we can't engage with normal life.

As many have said on this forum; the more serious your tinnitus is, the more you need help, the more you are left to resolve it yourself.

 

What would you recommend for extreme cases of reactive tinnitus and hyperacusis? It sounds like you would advise to avoid normal sound exposure, correct? So is it best to just stay inside a silent room 24/7 with earmuffs for a certain period of time? How long? Is there anything else I can do to give myself the best chances of healing and recovering? I've had this thought too that maybe the ears have to heal first, before we then maybe very slowly re-introduce normal sounds again. Right now my tinnitus reacts to almost every normal sound, spiking my tinnitus, and too much exposure will make my ear ache worse.

 

@LostTruck, I've read through your postings, I see your tinnitus is oxotoxic induced and others have advised you on this matter.

Mine is noise induced, so the nature of what is required in our recoveries may be different.

That said; we both have reactive tinnitus and hyperacusis.

If sound is making you worse, then I would advise against any kind of sound therapy for now. I don't know how 'silent' your room is, if you are living with family or in a noisy flat, or if you have a barking dog or whatever?

Ideally you would be living alone in a detached house in the countryside and could sit in your house, or even outside, without ear protection. If you can manage without 24/7 ear protection, I'd think that would be better: you don't want your brain to only hear your tinnitus. There will always be some sort of ambient background noise going on, hopefully your ears can absorb that fine.

As for what you can be doing in the meantime, try to keep yourself busy with 'quiet' past times. Other than that, there really isn't a lot else you can do but wait it out.

You can try supplements; Magnesium Glycinate, Vitamin B complex, Vitamin C, Zinc, Quercetin. Some believe they can aid ear recovery/healing.

 

You are definitely right.

But I concede the psychological problems accompanying this can be real. They are in my case and are severe. My disdain towards world, people and things around me is extreme, including myself. Maybe tinnitus/hyperacusis just uncovered/amplified it. Another more grounded person with the same level of tinnitus/hyperacusis would behave differently. Things that brought me joy in the past, put me off now. Things that I simply disliked, I hate now. Things that I hated/feared, I loathe and hate with hellish passion now. It is insanity, no two ways around it.

On a related note, @Jason C's my favorite story - though it took 2 years, his tinnitus completely resolved. I find it interesting and very relatable to read about his anger issues during the ordeal:

Dealing with Self-Hate

He persevered and succeeded, but in the end because his tinnitus went away?

It feels to me I need to somehow survive for a while without causing much more damage around me. If I heal in meantime, then maybe things will be ok, at least for a while.

 

I have read many of your posts. You sound a lot like me on the onset of this. I guess I can relate.

The trouble is we can't just go get on with our lives. Life itself doesn't allow for that. Not in the way others tell us to and expect us to. It feels like an opposing magnet, the more they push you towards normality, the harder it is to conform to it.

On the onset of this I really thought tinnitus and hyperacusis were the ultimate in undiagnosed, misunderstood conditions. I was wrong. I am suffering other misunderstood, misdiagnosed conditions worse than my severe tinnitus and hyperacusis - and in fact I get more sympathy from the medical world on tinnitus and hyperacusis than I do my current symptoms.

My mindset shifted. From being all consumed by tinnitus and hyperacusis, to being all consumed by my new ailments - because they are worse.

It made me realise the mind CAN shift focus. No one else shifted it for me, it came from me.

Engrossing the mind on a problem is a powerful thing. It doesn't always matter what the problem is but it must have meaning to you.

Wishing tinnitus to go away is futile and mentally damaging, accepting it is too stomach wrenching to contemplate - so now, I do neither.

I absorb myself in to whatever I can, and can still enjoy. Literally absorb.

Whilst you are where you are now, balance is the very first step, not normality.

I was given a good piece of advice which is do what you (used to) enjoy, even if at the start you hate doing it, and hate yourself for attempting it - but still do it. Keep doing it. It won't take long before glimmers of light and satisfaction do hit. Even in small doses at first but it can set off a chain reaction.

I never believed it at the start but the mind can adapt. It's not about accepting but adapting, and it takes time.

I was worried about something you said. You said if it suddenly disappeared you would still struggle with what it left behind...

...I'm a guy, not much in to talking therapy and personally see it as horse shit if I'm honest (for me personally, not for others) - but I tried it. It can help. Doesn't fix it, but can help.

I don't like giving up. I will keep fighting, researching, learning and discovering whilst I'm still able (and believe me it's damn tough at times).

You have had some really encouraging signs that in all honesty I am jealous of. I'd love to hear that in 6 to 12 months time you are having continuous improvements. Don't give up on getting there.

Vent your frustrations on here. It's what Tinnitus Talk is here for. Nothing weak in that. Keep doing it if you need to.

Engross and adapt. Change will happen, it's how the mind works.

Time is unconquerable, but it can heal.

 

Thank you for this post. I am sorry about your other health troubles. To me this is unthinkable right now. And most scary thing. A simple headache on top of my tinnitus/hyperacusis feels unbearable. Can't imagine anything more serious. This is what I think will break me. If I get ill with something else while still suffering from these, I will likely give up.

Getting busy with other things... I am trying but I guess not enough. Been going for walks/coffee but even that comes harder. Forced myself to play a board game with family. Could not wait for it to end. Played a little on a game console. Meh. Cannot watch TV, it's been like a month I think since I managed to watch a movie.

I loved driving my fun cars (and driving in general). I do that a bit, but should not. It's dangerous, while I got a better handle (it seems) on anger behind the wheel, I speed. Like triple digit speeds. Can get me in serious trouble in this idiotic country with those absurd underposted speed limits and idiot drivers (why I did not move to Germany where I could indulge in high speed driving is beyond me).

On top of it our house tortures me with all the sounds external and internal. Just can't find reprieve.

I think I don't like giving up, but this thought comes back every day. Indeed I'd like to last another year or so to see where this gets me. But I am totally unprepared for any setbacks.

Thanks again.

 

One thing that takes the edge off for me is using Bluetooth hearing aids and listening to one of the notched audio running water sounds from the TinnitusPlay app.

Sound enrichment, particularly in-ear devices that also allow you to hear ambient sound, might be helpful.

 

On the subjection of depression... which is still so foreign and unknown to me even though I've been stuck in it for good 3+ months.

People get into depression over a variety of things. Loneliness, feeling unworthy, unloved, failure at things they wanted to achieve, etc - or health problems.

For me tinnitus/hyperacusis took the joy of life, but also made me fearful of the future. The future of being unable to work, earn money, losing all I had worked during my life. I am also sensitive about my past life. Any pictures, memories from my past life, instantly bring tears. I just do not know how to cope and move forward.

 

Worst thing I did was to move to a "new" house. It's a cheap piece of crap, built with crap new growth wood. It creaks all the time just due to temperature changes. No wind, or movement, but it keeps making noises. I don't remember hearing these much before - I guess most "normal" people ignore them. But with hyperacusis these are unbearable.

Masonry houses are the only way for people like us. In this regard folks in most parts of Europe are much more fortunate.

The constant torture really is pushing me to end it. Also, for the last few nights I've been having nightmares, including dreaming about tinnitus. So even sleep is hardly a reprieve...

Will death give me one finally?

 

What about Dr. Shore's device? It should help you, right?