Be Honest. Do You Still Enjoy Life?

[Zugzug]

Lol.

 

[Simon85]

Honestly, I feel like I'm mentally limping through each day. I hate waking up in the morning with my ears buzzing, scraping and squealing... I used to be a morning person, but now I actively try to get back to sleep.

With that said, it looks like ears take an extremely long time to heal. And maybe there is some hope on the horizon for treatments. Battling through looks like the best option. I'd describe myself as a workaholic loner, so I can't say this has has had a massive impact on my social life. Work has actually been a welcome distraction.

 

[Forever hopeful]

@Chadilac

Nice to hear from you. I'm so sorry you're going through this. Life is hard enough. I have a job, kids, a husband, a house. Right now I'm barely making it through the day with 4 sound machines going while I'm working on my computer. I'm terrified to walk out of the room for fear that in quiet, I'll be hit with that dreaded noise. I know that's no way to habituate, but right now the anxiety is so bad that I've already taken 2 mg of Clonazepam today. And how disappointed am I because I was completely off of them.

I lost it in front of my 16-year-old today and just bawled my eyes out in his arms. I told him I don't think I can go through this again. Fearing for my safety, he called my husband and told him to come home from work. My husband's plan is to just try to fix things. It must be your allergies, it must be this or that. No; it's probably that something has happened to my hearing even though I have done nothing to cause it. I've had no noise exposure, no medication exposure and by the way, it wouldn't be unilateral if it was medication related, but you probably already know that. So here I am.

If you don't mind me asking, can you tell me a little bit about your journey with tinnitus? You reference that you've had it for 11 years. Do you have hearing loss and hasn't been progressive? Anything you feel comfortable sharing. Do you work?

TIA.

 

[grate_biff]

NO! I hate life. Over six years of suffering. Tried everything to get better.

But now with noxacusis and never ending benzo withdrawal on top I cannot enjoy anything!

 

[Chadilac]

Sure. My tinnitus story started about 11 years ago when a classmate in trades school discharged high pressure nitrogen through a hose next to my ear. The tinnitus grew louder and louder over several days and kept me awake for a week until I finally went into hospital emergency and told the doctor I wanted to kill myself. He gave me Valium which put me to sleep and I started feeling better. I habituated over about 6 months and forgot I even had tinnitus for the next 9 years.

Then I got talked into going to a concert and the tinnitus came back after. Fortunately it wasn't that bad and I habituated again relatively quick.

The tinnitus was very mild and I could only hear faintly at night when in bed. I had been lucky up to this point.

Then last summer I used a Shop Vac in a crawl space and severe tinnitus ensued. I could hear the loud high pitched ringing in both my ears over almost anything. The anxiety was off the charts. I bought a pair of entry level hearing aids that I used as maskers that I wore everyday for months until I habituated. It took 6 months but it was like magic. One day I just didn't need my maskers anymore and I was noticing the tinnitus less and less. I had it made and tinnitus was the last thing on my mind. It was still there but just didn't bother me.

Then last month I used another Shop Vac while only wearing earplugs (when I should have been wearing double hearing protection) and it took me out of habituation with louder tinnitus than before.

I can now hear it while driving, while outside walking, while in stores, etc. I'm back to wearing my maskers when I get home from work. I'm so mad at myself for not protecting my ears better. I now made a vow to myself that I'll bring my ear muffs with me wherever I go while working.

Now it's the waiting game again for habituation.

My worst fear now is that it is at a volume that will make habituation harder to achieve.

I still go to work everyday but it is hard because I do not handle the stress very well. I wish I could take several months off but it's a demanding job with a lot of responsibility so I just do the best I can.

 

[Mattv]

Going on 5 years now and realizing that tinnitus is permanent, I just don't allow myself the luxury of feeling sorry for myself. I know if I did, I would sink into a pathetic, self-pitying slough of despondency. There are worse things.

 

[PeteJ]

No. I feel like I have the loudest tinnitus in existence. I also get spikes from routine noises and sounds although they are usually loud. Baseline is also already unbelievably loud. I don't know how to describe it so I rate it as 9 or 10/10 severity and volume.

What is also depressing is there is no explanation to anything. My tinnitus worsened as it became much worse after three months following onset. It no longer calmed down in the evening or at any time. There is no fluctuation any more.

People here post that tinnitus gets better but for me, it was the opposite. There is no hope for any treatment or improvement. I am resigned to the reality that I will attempt suicide at some point in my life and become another statistic. Normally, I would not want that but I have no enjoyment at all anymore.

 

[GBB]

On days where my tinnitus is lower it is possible to exist in a state of somewhat relative happiness - on days where it is loud and unmaskable, that's impossible.

 

[SallyM]

I have good moments, but they are fleeting.

 

[FGG]

I really haven't had any good moments in over 2 years.

I have had chronic pain for almost 20 years but it didn't interfere with my ability to enjoy life (it did at times when it was very severe but mostly it was high moderate). I still ran a half marathon (was training for a full until i had an injury), wrote a book, travelled, loved, had a career.

But this is different. Just too many things.

Losing music just killed my soul. And now I have bad visual snow (was mild but worsened), moderate tinnitus and recently what I think is some form of TTTS.

Combine that with C-PTSD from severe vertigo attacks that lasted up to 48 hours (though I haven't had one on 18 months) for a period of about a year, being haunted by extreme emotional abuse and neglect for a year from my (now ex) husband once I couldn't work anymore and support our lifestyle. There is no betrayal like having your partner secretly film you when you are crying to the point of hyperventilation about seeing static everywhere and everything sounding distorted to show people how "crazy" you are.

I mostly exist in two states distraction/busy and suffering. I guess loneliness, too, if that's a state.

God, I fucking miss me.

 

[Sash]

Life was good but with tinnitus and hyperacusis worsening over the past two months the future looks bleak. Music was the only thing I look forward to but looks like that's gone too.

 

[Jrblovsky]

No. I feel like I have the loudest tinnitus in existence. I also get spikes from routine noises and sounds although they are usually loud. Baseline is also already unbelievably loud. I don't know how to describe it so I rate it as 9 or 10/10 severity and volume.

What is also depressing is there is no explanation to anything. My tinnitus worsened as it became much worse after three months following onset. It no longer calmed down in the evening or at any time. There is no fluctuation any more.

People here post that tinnitus gets better but for me, it was the opposite. There is no hope for any treatment or improvement. I am resigned to the reality that I will attempt suicide at some point in my life and become another statistic. Normally, I would not want that but I have no enjoyment at all anymore.

Mine is the same. Just keeps getting louder. I have roaring that is insanely loud all the time. Absolute torture.

 

[PeteJ]

Mine is the same. Just keeps getting louder. I have roaring that is insanely loud all the time. Absolute torture.

How are we supposed to endure life like this with no hope at all?

I don't know how tinnitus/SSHL researchers are supposed to treat this. :-(

I don't see any reason for hope.

 

[Jrblovsky]

I really haven't had any good moments in over 2 years.

I have had chronic pain for almost 20 years but it didn't interfere with my ability to enjoy life (it did at times when it was very severe but mostly it was high moderate). I still ran a half marathon (was training for a full until i had an injury), wrote a book, travelled, loved, had a career.

But this is different. Just too many things.

Losing music just killed my soul. And now I have bad visual snow (was mild but worsened), moderate tinnitus and recently what I think is some form of TTTS.

Combine that with C-PTSD from severe vertigo attacks that lasted up to 48 hours (though I haven't had one on 18 months) for a period of about a year, being haunted by extreme emotional abuse and neglect for a year from my (now ex) husband once I couldn't work anymore and support our lifestyle. There is no betrayal like having your partner secretly film you when you are crying to the point of hyperventilation about seeing static everywhere and everything sounding distorted to show people how "crazy" you are.

I mostly exist in two states distraction/busy and suffering. I guess loneliness, too, if that's a state.

God, I fucking miss me.

I'm sorry. Your ex husband is a POS for doing that. If only people would realize how much this tortures your mind. I wish everyone could have this severely for a one week and then maybe, just maybe they would take it seriously.

 

[Jrblovsky]

How are we supposed to endure life like this with no hope at all?

I don't know how tinnitus/SSHL researchers are supposed to treat this. :-(

I don't see any reason for hope.

It's because they don't care. They aren't suffering. Most people have experienced tinnitus temporarily and think it's no big deal. There are idiots out there like Julian Cowan Hill who make the general public believe this aliment is not a big deal. They are the problem.

 

[Keith Handy]

Torture.

 

[wwtsai]

Some days I do, some days (like today) I don't. I miss when my worries used to be relatively trivial and transient.

 

[Keith Handy]

The high point of my day is when I'm lying still and one of the tones sort of audibly fizzles or breaks up.

 

[Tatsopa]

To the question I'll answer yes BUT not as much as before tinnitus. I function pretty normally, still working a lot so my days after tinnitus may look like my days previous tinnitus.

To be honest, it's more the fear of worsening than the tinnitus by itself which is, at times, consuming. I could live a, somehow, happy life with that level of tinnitus but not knowing the underlying cause is filling my thoughts with questions.

What if the "problem" is still there and untreated, will it get worse?

 

[Adaś]

I feel your pain. I am on my 4th time having to habituate in the last 11 years. It is so frustrating that once you have tinnitus you have to be so careful to not make it worse. I had habituated just a few months ago from severe tinnitus and then made a mistake by not wearing double hearing protection and am now thrown back into tinnitus hell and it's louder than ever.

Yeah, this awful condition always finds a way to tighten the screws. Once I found some stability and started enjoying life a little bit (more) in 2019, then I got worsening from some stupid unpredictable series loud events despite my great efforts to protect myself. It is like... "oh you thought you can have normal like, here's some bonus for ya".

I mostly exist in two states distraction/busy and suffering. I guess loneliness, too, if that's a state.

I sympathize with you so much. I try to avoid suffering by keeping myself busy until I am so tired so I fall asleep. I am lucky to have rather good dreams without dreaded noise. Then I wake into daily nightmare again, and keep myself busy.

God, I fucking miss me.

I miss myself too. But no, I won't give up, I won't let this f... thing win. I will keep smiling and pretending to the others I am such a happy guy.

 

[aot]

To the question I'll answer yes BUT not as much as before tinnitus. I function pretty normally, still working a lot so my days after tinnitus may look like my days previous tinnitus.

To be honest, it's more the fear of worsening than the tinnitus by itself which is, at times, consuming. I could live a, somehow, happy life with that level of tinnitus but not knowing the underlying cause is filling my thoughts with questions.

What if the "problem" is still there and untreated, will it get worse?

This is me. 100%.

 

[DaveFromChicago]

As I mentioned previously, a man I worked with lost 12 pounds in one month and went to the Doctor. He was diagnosed with pancreatic cancer and died within one year.

It occurred to me that, if I had never had tinnitus this would have been a catastrophe.

With tinnitus, I might very well have been gladdened that this was a deliverance from this insufferable condition. I would have been supplied with all of the heavy painkillers that would have neutralized my abhorrence to this condition, and my cowardice about suicide would have found a resolution.

 

[Lane]

my cowardice about suicide

Hi @DaveFromChicago -- My own take is that hesitancy about committing suicide is more a sign of courage and maturity than cowardice. I would never judge another person's choice on this kind of matter. But I think it's usually the case that it takes more courage to live with a difficult situation than to desperately throw a life away. Especially if it's done before fully examining many alternatives, some of which may prove to be extraordinarily helpful. Sometimes the most helpful thing we can learn is patience. -- Take care!

 

[Chinmoku]

Lol.

My sentiments, exactly. I don't even have a sense of what enjoying life means anymore, after 2 years and a half of this ever worsening @#%$£$!!! It's an hour by hour fight to survive torture and stay here, trying in vain to look normal for my children. This is not life, it is hell and there is nothing to enjoy. This is not meant as an attack to those who have more tolerable symptoms, I am really happy for all of you who can still enjoy life.

 

[DaveFromChicago]

Response to Lane:

Your point is well taken.

On Valentine's day my wife gave me a card that said "You Are My World", and she said that she seriously meant it.

We both acknowledged that after 30 years we have never seriously contemplated leaving each other.

It is excruciating to weigh the cruel, debilitating burden of tinnitus against the reliance and demands those closest to us have.

After 7 years going on 8, I no longer bring up this unbearably sore subject. She expects me to utilize CBT techniques, which I have ultimately found to be as effective as the proverbial tits on a boar hog.

Can anyone help me with a theory regarding my present tinnitus cycle?

One or two days will be intense to the point of maddening; the next day will have the tinnitus present but less severe than before; the third or fourth day will have it nearly nonexistent. The cycle then starts right up again with the prior intense level, with the same gradual decline.

Although I have exhausted myself with analyzing what I am doing that results in these apogees and perigees, it nonetheless remains a total mystery.

Any comments or suggestions would be much appreciated.

 

[Greg Sacramento]

No. Besides very loud hearing loss tinnitus, loud high pitched physical tinnitus and loud pulsatile tinnitus, just too many serious physical conditions that are all very painful. Almost 68 years old.

 

[just1morething]

No. Besides very loud hearing loss tinnitus, loud high pitched physical tinnitus and loud pulsatile tinnitus, just too many serious physical conditions that are all very painful. Almost 68 years old.

It can be a cruel world. I think of the wild animals trying to live through this intense cold spell in the central US. We have deer and wild turkeys come very close to our house. I'm not sure how they survive. I put out birdseed and cracked corn.

 

[Catshrk]

My life's just beginning. I'm 17 going on 18, I was a competitive weightlifter, a musician, and a hard worker. Ever since this started my life's been slipping through my fingers. I lost my partner of 3 years over this, I've missed work and school several days now, I haven't touched my barbell at all, and I can now say the same for my saxophone.

I'm now over 3 weeks in, and nobody's been able to provide any answers. I've been to an audiologist and an ENT, they tell me that my ears look and function perfectly fine for someone my age.

The last thing on my list is an MRI. And if that doesn't reveal anything, I'm going to lose it...

 

[Keith Handy]

God, I fucking miss me.

This encapsulates it all.

 

[Sash]

My life's just beginning. I'm 17 going on 18, I was a competitive weightlifter, a musician, and a hard worker. Ever since this started my life's been slipping through my fingers. I lost my partner of 3 years over this, I've missed work and school several days now, I haven't touched my barbell at all, and I can now say the same for my saxophone.

I'm now over 3 weeks in, and nobody's been able to provide any answers. I've been to an audiologist and an ENT, they tell me that my ears look and function perfectly fine for someone my age.

The last thing on my list is an MRI. And if that doesn't reveal anything, I'm going to lose it...

Yes perhaps it's harder when you are young and starting your journey. There are no answers. Be careful with the MRI; they are just too loud. I would try to stay positive and continue exercise and your education.