Despite Thinking I Achieved Habituation, the Truth Is I Did Not — I'm Close to Giving Up

Despite thinking I achieved habituation, the truth is I didn’t. Not in the long run anyways. I honestly don’t know what to do anymore. My life is so severely affected by this damn ringing.

I can’t sleep without several medications and other aids, I can’t enjoy the quiet anymore, I can’t concentrate, I can’t relax, my happiness is dampened, my entire life feels like a game of being happy in spite of this damn condition. A condition that never improves, but only stays stable if you’re good and has 1000 things that make it worse.

My stress response has been so hyperactive that my adrenal glands have down regulated by a lot. So much that almost getting into a car accident barely made me flinch. My only means of escape are drugs that temporarily remind me of how good life was before all this.

Why...just why did I get stuck with this at age 22? Why not 62 when most of my hearing is gone and it doesn’t matter since I only have 10-15 years left?

It’s been 2 years now and I’m exhausted. I never feel relaxed or refreshed anymore. I beginning to crave that sweet release from this awful affliction.

I am here for now, but goddamn I don’t want to be.

 

I got mine at 21 and I'm still standing at 48. There are ways to cope, however frustrating it is to rely on just coping strategies. And please steer yourself to this thread, stat.

 

The first six months of this condition was hell for me. I contemplated suicide, but I got past that and things started to get better for a little while. Now, 3.5 years later I feel like my life is ruined. Every happy moment in those 3.5 years has been dampened by this condition. I am dependent on Klonopin, Gabapentin, Clonidine, and other meds because I can't sleep. I barely slept before I had this awful condition, now it is unbearable. I haven't slept the last two nights.

How does anybody find happiness in this? The research keeps focusing on the limbic system and the mood/psychological reaction to tinnitus, but they fail to see that one causes the other. Take the personality trait neuroticism, which is associated with negative affect. In chronic pain, it was once thought that high trait neuroticism caused acute pain to become chronic pain. However, research found it was the other way around and that neuroticism decreased when pain was alleviated. I wager $1000 that you will find the same thing with chronic tinnitus.

I was able to handle it for a while but hell, why? What did I do to deserve this? Not fix that really loud shower head my crappy college apartment had? Not insist I be given antibiotics for an ear infection I was diagnosed with? I've been abused, bullied, traumatized, and now my life has to be ruined by this. The worst part is mine is very high pitched, making it hard to mask and it is less responsive to residual inhibition.

I just... really hate life right now. That's not to say there isn't hope for others on here. I'm not the cynic I used to be. But I hate life right now.

 

Sorry to hear you are suffering so much. I can relate. I passed the two years mark recently. It kept worsening from day 1 and now I'm incapacitated and in agony 24/7. I used to have some windows in the evenings where it was slightly less severe and I could at least enjoy my kids company but even those seem to be gone after another botched medication attempt that worsened things further. Still on a relatively low dose clonazepam but it seems to be doing nothing. My wife is fed up and wants to split, I'm tortured 24/7 and can't go on but my kids need me. This is pure torture.

I agree with you that neuroticism is triggered by this constant torture rather than the other way round. There could be a bit of a feedback loop component but stop the tinnitus for long enough and I'm sure many of us would go back to a more normal life with a remission of all neurotic symptoms. Some of us might retain some PTSD, but hopefully that would go away after some time.

What we really need are treatments or cures for this condition, not more benzos, gabapentinoids, mood stabilizers and antidepressants that turn out to be a lottery and rarely work long term. We do have things in the pipeline that could help us, but they are 3-5 years away at the very least, and others are more realistically 7-10 years away. A combination of SPI-1005, FX-322, OTO-413 and maybe the Shore device could save us, but when one is tortured 24/7 at these levels, every hour seems an eternity, how can we wait five years? Five years look like centuries to me right now. I only want to see my children grow up, I'd be asking for nothing more at this stage, but this relentless condition is horrid and without mercy.

Not to mention that when you really feel you can't go on anymore - which is nearly every day these days - what do you do? If you go to the ER they send you back home or tell you to see your GP. If you go to a psychiatric ward they polydrug you and you are worse off than before as all these drugs are a lottery. Really, if I had to sit down and design an evil torturing condition with no escape I couldn't come up with something this horrible.

Sorry for the negative post. I so much hope that I can write something positive some day but it looks harder and harder.

 

The other consideration is these new treatments will be very expensive at first.

 

I personally wouldn’t put a price on silence. Take out a loan and pay it back with your newfound +200% productivity when you don’t have a piercing squeal squeaking at you all day.

 

OH YEAAAAAAH.

 

At its worst, it's in the top 3 worst conditions known to mankind.

At its best, it's nothing more than minor annoyance... both ends are called tinnitus... go figure.

We are being done a great disservice by calling this both tinnitus... we don't call a mild headache a migraine and vice versa... so why do we call severe tinnitus - tinnitus?

Tinnitus is the type you have to listen for it to hear it, or at most the type you can forget about.

No, severe tinnitus should be called something else... like APSD - Advanced Phantom Sensory Disorder.

Don't call it f*cking tinnitus from the Latin word tinnire - "ringing"... it's not bloody ringing... Ringing is when we first experience this in amusement and we're like oh what's that and then we forget about it.

 

Hey @GlennS, just curious if you have a success story or can recommend any that I can read about on here? 2 months in with high frequency tinnitus and really struggling with panic disorder etc. Thanks.

 

I am sorry you are struggling ((((hugs))))

I have experienced habituation (reaction and perception). It is a real thing.

Unfortunately, I have become unhabituated since October 2021, but hopefully I can trick my brain into thinking the noise no longer matters again.

I had a relapse in my tinnitus in 2020. I suspect the culprit is perimenopause. I took several months off work and spent most of my days just trying to cope and looking for answers/solutions. Melt down after melt down ...

In the end, I realised it wasn't going away, and I had to force myself to return to work and give rehabituation a chance.

At the time, I had caring responsibilities for my aunty (who has since died), and concerns about a cousin's heart surgery. So these things, and work, must have somehow distracted me sufficiently enough to trick my brain into believing that I wasn't under attack anymore.

I can reassure you that once you habituate, life returns to near normal. It was as good as a cure to me. I no longer felt like I was scraping through the days, just trying to cope with the noise. I had my life back again.

I have always been a worrier. OCD since 2013. I believe dealing with the panic/anxiety is the first step to reclaiming your life back.

This is why I am doing EMDR. So far, we have spent the last 3 sessions discussing my past traumas as a way of discovering how I am wired up, and how this impacts on how I respond to my tinnitus now. The therapist suggested to me yesterday that my OCD is an obstacle to my rehabituation and that addressing this may help facilitate adaptation.

Of course, I just want the head and ear noise to eff off. But, if I can learn to simply 'not care' then to me, that is OK.

On that note, I will say that long before I met my tinnitus in 2013, I remember hearing a very faint, barely audible sound whenever I put earplugs in at night. I used to think it was normal, quite liked listening to what i thought sounded like nature. It never bothered me at all, and had no idea that this was tinnitus.

On days when you think your brain can't ignore the noise because it is too loud, think of this. I had severe nausea back in 2020 after trialling some Cilantro. It laid me up on the couch for about a week. I felt really unwell. The tinnitus, which was a problem at the time, somehow became a non-issue whilst I was ill. I lay in the quiet trying to breathe through the waves of nausea, and the tinnitus was the last thing I could think of at the time.

A few weeks ago, I had a fall at home (I am a klutz) on the wet floor boards. I landed on my left knee. Do you think I was aware of my tinnitus when I was on my way down to collide with the floor, or when I lay there on the floor, clutching my knee in agony after impact?

My cousin experienced a sudden unilateral hearing loss several years ago. Initially, misdiagnosed with MD, but thought instead to be caused by a viral infection. Years later, she is living a very full and happy life. The tinnitus is the least of her troubles. I asked her how she managed to habituate, and she said that it was partly because of her personality, but also her attention was on surviving a 20 year drought (they were farming crops at the time), raising kids, paying bills etc... She was forced to keep putting one foot in front of the other because she had so much on her plate. I guess this helped to push her tinnitus to the back of the queue...

A close friend of mine, whom I met here about a year and half ago, has now habituated to LOUD tinnitus, with a background of anxiety and panic. She hears a couple of different sounds, high frequency, which are reactive, and yet she no longer reacts to her tinnitus. The turning point for her I think was: 1. chronic pain condition and 2. returning to work - getting busy and distracted. I saw a dramatic shift in her when she returned to work and found other things to distract her from the tinnitus. She says now she would rather not have it, but is now experiencing chunks of time where she is no longer aware of the tinnitus.

You would have found the Back to Silence thread on here, but i find Terry's story inspirational; particularly since his tinnitus was so chronic. In his posts, he is teaching us attention shifting.

I think I have mentioned my friend @Samantha R, who has experienced a 'cure' from LDN (which I know you are already taking) for what she believes was inflammation secondary to her hormones. She has her life back.

I hope this helps.

 

@DebInAustralia, you are a godsend for these kind messages and positive story. I greatly greatly appreciate it at this fragile moment. Yesterday I was badly shook up as I was seeking positive reinforcement and success stories here and another user blindsided me with a euthanasia YouTube video of a tormented tinnitus sufferer and told me he draws strength from that. Needless to say it threw me off guard and had me very upset.

Your story very much brings me back down to earth and makes me feel grounded. Despite this I did have a small step forward this morning. I noticed for about 5 minutes on my phone and a few minutes while driving I was unaware of my tinnitus. I take that as a very small win 2 months in no matter how long it may take to habituate, and I realize I will have setbacks as well.

I’m sorry to hear about your relapse but happy to hear about your success with EMDR. I have brought that up to my psychiatrist who specializes in CBT and TRT so hopefully he will have something to report back on it.

You are correct, distraction is key, and thanks for sharing the success stories of other folks with anxiety and OCD, that is definitely a part of my genetic makeup. I will definitely check out that Back to Silence thread and yes I’m familiar with Samantha’s story.

I recently came down with a cold and sore throat and have had a setback this evening. I’m not sure what’s happening but my hearing is muffled and I feel very heavy fullness in both ears. The tinnitus is just as loud unfortunately but I hope this isn’t anything more serious like hearing loss etc. Have you experienced anything like this along with tinnitus? I do have mild hyperacusis/sound sensitivity but not sure if the muffled hearing/ear fullness are related.

 

Hello again lovely,

I know you are fragile. I can also tell from your posts how resilient and resourceful you are!

I try to steer my already challenged brain away from anything that is going to add to the distress.

Look for the positives. It will give you the courage to face whatever lays in front of you.

I forgot to mention a young film maker, who @billie48 has referenced a few times in his posts. She is basically completely deaf, with tinnitus. Her name is Zoe Cartwright. She has made a short film about tinnitus and you will find it on YouTube. In an interview, I read that she has learnt to accept her situation, and in spite of it, has a good life. On bad days, I try to think of her. If she can do it, so can we!

I am glad you're open to trying EMDR. I am really looking forward to doing the actual treatment on Friday. I'll keep you posted about it if you want.

My ears do weird shit all the time since my onset. My hypervigilance associated with my OCD means I notice it a lot more. If you have had a cold, you probably have some fluid in your ears, contributing to the muffled and full sensation that you have. I have experienced that heaps of times. I'd try breathing in some steam to see if that can help clear your sinuses. I don't believe it is a sign of hearing loss if you concurrently have a cold. I'd put my money on congestion, that is going to resolve.

When I first met my friend, I had blocked, fullness feeling in my ears. That gradually got better with time. Just before a spike, my ears will go muffled.

I can tell you that you are going to be totally fine. I know you can't see your way out of this at the moment, but one day; you and I are going to scratch our heads and wonder what all the fuss was about...