After Habituating to Tinnitus, When Did You Feel Comfortable Going Out with Friends Again?

The thing I miss the most is that peaceful feeling of being able to walk into any environment and just have fun. Not worry about how it’s going to affect me. Something that has been stolen from me for the rest of my life.

 

It’s tough, I agree. I’m right there with you. I think we should try and be positive though (easier said than done, I know)

I constantly am seeing techno events and concerts I would have loved to go to merely a year ago, and wouldn’t have given a second thought to. In 2018 I went to 40 shows (with earplugs) - it wasn’t till I took medication that was supposed to help me that I’ve had to deal with this worry and stress. Now seeing these events makes me sad - someone reached out to me about how we hadn’t hung out at an event and I had to be like sorry, I’m on a hiatus from these things because of this tinnitus sitch. But she expressed sympathy and said we can hang out and chat sometime instead

I personally have filled myself full of negativity and worry from this site in general that I didn’t really have for the first 6 months I had this bad tinnitus - I had some, but checking this site daily didn’t help. I know all I need to know now about trying to be safe, and the negativity isn’t adding value. I recently read someone’s success story about having tinnitus way louder than a truck, but slowly returning to finding joy in life and resuming normal activities, just more cautiously, and I think focusing on those examples is the way forward.

Our lives have changed, yes. I’m with you there. I feel sad about it daily right now. But I think focusing on that negative isn’t the way forward, and is already causing me way more suffering than need be - we suffer enough already.

Hopefully you have good friends you can rely on and talk to - so far that’s been very helpful to me. I don’t have any great advice, because I’m still in the coping stage too, but let’s try and move forward as best as we can.

I recently (before I was hit with tinnitus) read Man’s Search for Meaning by Victor Frankl - I think it’s helpful and a quick read. If humans can find a will to live and meaning in life in situations such as Auschwitz, where their entire humanity is stripped from them, all enjoyable activity and pleasure is taken away, they’re separated from friends and family, and their bodies are falling apart through starvation and disease - then we can find meaning too. Yeah, this sucks, but I’m going to try to focus on gratitude and what things in life I can be grateful for.

I don’t know if this was helpful or will be helpful, I’m mostly just rambling to myself and trying to convince myself to be happy, but it seemed like you could use the support too.

 

I don’t want to hang out with any of my girlfriends because all I’m going to hear is about their dating lives, careers, fun things they have planned, etc. I also don’t want to sit around and cry about myself because I’m embarrassed of having a mental breakdown in front of them.

I just want to live without this fear. I am not a positive person and never have been, so BECOMING a positive person when I’m going through the worst possible thing I’ve gone through isn’t likely. I don’t want to pay $200 for some quack to listen to me cry when I can cry by myself in my car. Therapists don’t want to help, they’re just there to prescribe meds. I studied psychology for my degree so I know all about it. Even knowing how bad meds are, I would gladly take them if they didn’t cause Tinnitus to get worse.

I’d make a bezno/SSRI/ambien smoothie and ingest it through a beer funnel .

Maybe I should make one anyways and down a couple of bottles of wine with it.

 

You articulate your thoughts very well and admire your positivity and realism in the light of adversity. Actually my biggest joy in life was actually attending trance festivals but now seems impossible and perhaps will not attend one every again. Its a devastating below as already given up other pastimes like Deejaying headphones, football matches cinema and nightclubs. I was hoping to attend around one or two events a year but can't even do that now due to hyperacusis and reactive tinnitus.

Must be devastating for you an others too having to stop going out especially when its human nature to see what other people are doing in their lives and feeding back on social media. Yes it hurts both physically and mentally

Yes while life has taken a downturn I totally agree with you that sometimes we have to be grateful what we got and not what we have not got.

My audiologist warned me to stay off tinnitus forums etc as just breeds more anxiety but just can't help myself.

Somehow while easier said than done is stop focusing on Tinnitus by keeping busy and just hope it goes away or your habituate.

 

@Yuuls

I feel a lot like you. I'm a bit older than you, but relatively young. I just can't fathom living a life like this. Besides the obviously horrible sounds (my tinnitus is only at a moderate level though, but the pitch and shrillness is terrible) , my biggest worry is that it's going to become worse. I hate that I have to be always vigilant and never for a minute can ease up. I have panic when someone shuts the door, I hear an ambulance, etc.

And in the recent months I snapped at my family a lot of the times. I'm afraid I'm ruining their life as well. They want to, but they can't help and they worry about me a lot. I get very frustrated when they talk about the future, or try to give me advice to what doctors I should see, what alternative therapies they read about, or when they talk about acquaintances who have tinnitus, but deal with it just fine. I always feel guilty, because I cope with this horribly. The very severe lack of sleep doesn't help either.

As you said, I've never been a positive person, always had a pessimistic personality, have had depression and GAD for years, so I find it pretty hard to search for a silver lining in this condition.

 

It took me 8 months before I went out with friends for a quiet meal. I had a foam earplug in my bad ear and a silicon one in my other.

Both the friends in question are musicians, one of whom has had catastrophic tinnitus himself in the past but which has now settled to the point he can live with it again.

I knew for a fact that they were not excessively noisy friends and would be good company. Having done this, it's made me feel I can do it again.

 

I'm starting to realize that yeah, regularly checking Tinnitus Talk is not helpful or good for my mental health, or for adjusting. It's probably wise to take a break. In many ways it's like picking at the wound.

When I first got my tinnitus, I was insanely worried, checked Tinnitus Talk and Reddit etc etc, read about it, and then hoped it would get better and went back to normal life. It still bothered me, but most of the time when I kept busy I didn't think about it. Maybe if I'd read more I might've been safer, but the mistake I made when I forgot ear plugs at the wedding and knew it was too loud - like I knew it was too loud and I didn't leave, and it was my mistake, but I don't know that obsessing over it would have prevented that (maybe I might have taken it a bit more seriously, but who knows). Something else could have happened by accident - that's life.

So then it started getting worse in the few months after that, which was depressing me and frustrating - but I really didn't start to depressive spiral so badly about it until I started really spending a lot of time on these forums over my holiday break, reading horror stories, reading about how it could get worse, reading people lamenting their condition. I obsessed over all the mistakes I'd made over the years that led me to this place - what could I have done differently? But unfortunately, obsessing over the past doesn't allow you to change the pass, no matter how hard you think and sketch out the timeline, the mistakes, etc. The best you can do is learn from it and move forward. And you'll likely still make mistakes, because humans are fallible, and the universe is random and bad luck happens. Life ain't fair.

The horror stories of people having it get worse also led to fear of the future for me - I kept thinking, shit, I have to give up all these things I love (and maybe if I'd done so earlier or been more careful, it would've been less bad now), and it's one more thing I have to worry about now. I don't want to deal with this forever. I don't want to end up with severe ever present screaming tinnitus. That's scary. I'm totally agreed. And music has been one of my greatest joys in life, my favorite leisure activity, something I care a lot about, and I hate that I can't enjoy it like I used to.

But, after a certain point of reading everything, and obsessing over the past and fearing my future, and revisiting the same threads, reading more stories, etc... more information isn't really going to help me. I'm just getting myself deeper into the wallowing stage and ruining my life as a result (and making it harder on my friends and family). It's tricky when tinnitus is constantly there as a reminder of all these feelings - regrets, fears, why did this happen to me and not others, etc.

But now I know what I need to know I guess, having read so much. And the only thing to do is to reasonably protect myself and take care of myself the best I can and move forward. Maybe cures and solutions will come out, but maybe not. Maybe, even if I try to reasonably protect myself, something will happen that will make it worse. But obsessing over the fear of something happening that hasn't happened yet isn't a good way to live, and doesn't actually help anything - caution is good and wise, but fear shuts down life. Maybe it will get worse and I'll have to deal with that when I deal with that, and that sucks ass that I have to worry about it, but living in fear isn't going to prevent that from happening. Maybe I'll get hit with a car running a red light when crossing the street, which I do every day, but living in fear and paranoia about that possibility isn't going to prevent that from happening. The best I can do is take reasonable precautions, be smart, and carry on living.

Sorry, I'm largely typing these things out to myself as a way to convince myself, but it's helpful for me and hopefully will help others. I'm still struggling, yes. It still sucks, and it's not fair - but I don't need to make it any worse for myself than it already is. My ear is aching and ringing in response to even things like flushing the toilet. I can't listen to music at work like I used to. But I'm tired of these feelings of depression and fear and pity and obsession and I'm over it. As much as I'd like to undo the past or fix my tinnitus by sheer emotional will, that ain't gonna happen, and will poison all the good things in life I still have going for me.

Fuck that.

@fishbone thank you so much for your welcome to the site. You're an inspiration.

I think my daily checking at this point is starting to harm me more than help me - I learned a lot more about how I should better protect myself, and what things to avoid. I'll definitely stay on the site, but I'm going to try to only look at most once a week.

I'm going to try to live my life and spend time with friends, and maybe it will be in different ways than before and I'll have to turn down certain things to try and be safer, but I'm not going to live in fear.

 

@Shaz1 Whatever happens in life I know you will be successful and manage as you have the right attitude. Past is the past and we all look back with regret if I had avoided this or that that’s only natural but doesn’t fix anything. The only thing you can control is your state of mind which you are doing admirably. It’s easy to wallow in self pity and feel sorry for ourselves but the greatest challenge is to go up a level from that. One thing I noticed is that if I got Tinnitus at a young age I wouldn’t be able deal with it as i didnt have no understanding of life. I would most definitely felt sorry for myself and would have got terribly depressed. Now I am little more experienced and arguably mature so can deal with it a little better. I know as you age health will deteriorate - there are hundreds of ailments and illnesses that could happen and may happen. Tinnitus is horrible but I have to accept in my case part of the aging process. It’s my only health issue. Of course I wish it wasn’t there but I am still able to do everything apart from go to any form of loud venues

It’s probably harder to deal with now with constantly bombarded with social media updates from your peers and feeling of losing out I’m life. You may at some stage take calculated risks when you are ready as know you are pragmatic and will be ultra cautious. Perhaps slowly venture out - maybe lower sound outside venues you can occasionally attend.

Looks like your tinnitus is reactive like mine which seem to spike in the past at every gig I went to but only went few times in the year and tried to be careful. Actually I don’t regret going. I world have regretted not going. However I know my limits now and probably was little naive too thinking I was invincible.

My tinnitus is loud and hear it above 80 decibels. I now have hyperacusis which is worse but doesn’t cause issues with particular sounds like plates, toilet flushing etc. It just reacts to loud sounds and occasionally ear ache and burning sensation. My mistake is listening for it all the time simply just to hear if the tinnitus and hyperacusis has got better so I can go to next month gig. It’s the only Event I want to go this year. It’s silly and foolish i know but we need something to cling onto as given up everything else. I guess once the date has passed for that gig I can relax and not think about my tinnitus as I have nothing planned for the rest of the year in terms of loud events.

 

time is the best thing. I remember the first month or 2 was so fucking hard.

Even now there is good and bad days.
But it’s definitely not like it used to be.

when i first got t the sleep issue was horrendous. And that I turn made things worse the next day.

I hope over time yours fades.

mine definitely faded from 6-7 to 2 I’d say.

I still have spikes and things where it’s 7-8 some days. Or weeks. But I am pretty thankful for the days when it is quiet.
I hope you have that too.

although to turn off fight or flight response, you just need to tell yourself it won’t hurt your. It’s annoying and it’s here, yes I can hear you but I’m not going to give you attention.

try and keep distracted.

 

The thing that confuses me the most was the onset of mine.
I’ve never heard any sort of ringing. I did go to a concert 4 days before my tinnitus began, so I suspect that’s what did the damage, but it seems like most people here get it immediately that night or the same morning.

I have read that noise induced trauma can be delayed though.

Every time I chew my left ear feels sticky, like something in there is literally cracking, sticking and almost itchy/annoying but it’s only when I eat.

I just find that super strange.

 

It can be accumulated damage..

I also get the sticking and cracking, also get pressure.. usually worse during spring time.

I hate it, I never had ear issues before T

 

Hi Krizsti, love the way your name is spelled. I can identify with everything you said. Especially snapping at family. My mom follows up with me all the time and she just doesn’t understand there isn’t much doctors can do for this. She’s very much stuck on the “only older people and those who are professional musicians” have these type of issues.

I’m not even going to try showing her this forum because she’s not gonna wanna see it. She gets upset with me for even bringing it up. I know how much she worries about me and it pains me so much. She brought up going to church yesterday and we’re not even religious people and I absolutely snapped. It was such a sad phone call, she wishes she could help me but she can’t.

I’m not strong enough to handle this. I had breakdowns over previous health issues this year. I had a surgery done this June, and then some foot problems again in the fall, so they were legit issues, not minor - but they had a solution. My breakdowns were dramatic I think, but this time it’s kind of like that story “the boy who cried wolf”.

I keep on thinking maybe there is something wrong with my lizard brain, but I can’t fix it

It’s crazy how the brain can feel “crazy” and at the same time recognize that the crazy reaction isn’t healthy or normal

I really do hope you find some relief with this soon. Even if it’s the tiniest bit of hope. I think we can all use a little bit of it at this time

I really do hope things improve for you at some point in the future. You seem like a very positive person (at least through your responses) so I hope you don’t lose that through your journey.

I too, should stop looking at these forums. I appreciate them SO much, and I’ve learned way more on here than from any sort of doctors and I will forever be greatful for that. But it’s starting to become an unhealthy obsession and I fear for my mental health if I continue to go searching for even more sad stories, and with my personality I’m more often on the suicide thread than the success story thread, which says a lot.

 

But most people get some sort of minor ringing. And then it keeps happening and happening before it becomes permanent.

I never had this so how did it get so bad so fast

 

I wouldn’t say I’m positive - most people would say the opposite. I was all doom and gloom and despair the last few weeks. My poor parents have also had to deal with it, and worry about me and my sadness.

Somehow it’s easier to give advice to others than take it yourself, but a good guideline I’ve found is talk to yourself the way you would talk to others. So typing up the above really helped me square up some thoughts. It’ll be hard to internalize those thoughts, but I think that’s the right way to move forward.

It’s good to learn what you can - I learned a lot too. Heck, without the internet I wouldn’t have been able to figure out that my medication was what was giving me tinnitus. But once you know what you need to know, more info isn’t going to help. I think it’s worthwhile to check back every now and then if you need support, or to see if there is any interesting news, but checking daily and hourly etc is only going to make you think about your tinnitus more and how it’s impacting your life, when you could be reading about something else that is interesting, meaningful, and engaging to you.

 

I habituated quite fast thankfully, and I had some ups and downs along the way. But I started going out with friends and enjoying life 1-2 months after my tinnitus onset. But we choose places that weren't too loud/noisy. Almost a year after my tinnitus I flew to London, and I was terrified that the sound would make my tinnitus spike, but with protection it went very well and I could enjoy stuff in life again.

Now my tinnitus isn't the worse out there, but it could still be very hard on me, specially when the reactive part kicked in and sound got distorted.

Don't limit yourself just because you have tinnitus, but also be careful and don't go to concerts (unless you have good protection of course).
For me, I never liked parties or clubs or loud music in the first place, even without tinnitus, so going to more quite, chill places are the best.

 

I think a lot of people got it from a one off noise exposure, including myself.

 

It’s not going to be lifelong. I had just turned 28 when all this shit started. Significant relief will be afforded you in time—both as a commodity in itself, and with viable treatments like Dr. Shore/FX322.

It’s incredibly hard to project the future in living with this ailment—psychologically, vocationally, socially, experientially, etc. but the fact that there is enough background sound going on at your work to effectively drown out the signal is a VERY encouraging thing. It’s horrible to think that the prevailing sentiment is “sit put and suffer until it’s better” but this will become outdated relatively soon.

Btw, my noise-induced tinnitus was delayed by a month (airbag explosion->hyperacusis & fullness->acoustic insults from what were previously innocuous sources->woke up with tinnitus).

 

If yours is easily maskable, try sleeping with that first. I got put into a psych ward over my severe insomnia about 3 months into the ordeal, am on 225mg Quetiapine (slowly decreasing this from 300mg) and 15mg Mirtazapine. Relatively safe for tinnitus (no spikes), sleep for 10 hours now because sleep architecture in tinnitus sufferers is altered and my body just isn’t good without 10 hours. Thinking of it a different way, at least that’s two more hours I don’t have to be conscious.

 

The terms "negative" and "positive" get thrown around quite bit around here, but to me it sounds that you are just being realistic.

I would put myself in that category as well.
I know what I have and I know, that as it is right now, there is no way to turn down the volume, except for blowing it out of my skull with a 45.
Those are the hard, cold facts as of right now.
This might change in the future of course, but when you are being actively tortured, just one single week feels like an eternity.

A therapist (whose biggest hardship to date was a sprained ankle while playing tennis) will be most likely just further insulting the sufferers intelligence by giving them all kinds of scripted "ideas", in which he/she will urge them to pretend that tinnitus is their best friend, or a new kitchen appliance (right after he/she looks up tinnitus on his/hers laptop)
All of this for a nice fee of course.

 

@Harley - you deserve the genius flag for your realistic summary of the facts and the situation we all find ourselves in.
Also for very clearly seeing through all the therapeutic crap that we continuously come up against.
“Tinnitus: from Enemy to Friend,”
- and all that nauseating “SHIT!!”

This morning a friend phoned me to say he’d had a ‘terrible’ cold for five days!
Oh dear - big hairy bananas - what a crying shame!

He should try “Severe Tinnitus” for over
Five Fucking Years !!

So - very well said brother.

 

Thank you for the kind words Jazzer.
It sure sounds that they are coming from someone, who has been around the block couple of times and has an exceptionally well developed BS detector.

We know what this is and we don't need to pay someone to sugar coat it for us.
Self deception simply does not work for me.
What we have is an incurable (as it stands right now) condition, which can and does lead to suicide at the upper end of the intensity spectrum.

There are all kinds of pressures upon us to accept the unacceptable, so they can wash their hands of us and spend the money elsewhere.
I have paid taxes into the system all of my adult life and aside from minor stuff, I never asked for anything in return.

This is why I will NOT accept tinnitus.
Not now, not ever.
We deserve so much better than that.

 

I usually don't write posts like these but I'm in the mood. It took me almost 2 years after getting my catastrophic tinnitus and hyperacusis to start going out again, which I have been carefully doing now, without any hearing protection mind you. I have been a weird case, after getting my 11/10 tinnitus and hyperacusis I vowed to do everything to reduce it's volume and maybe even heal my hearing, despite almost everybody's words that it's impossible. My obsession might even be comparable to somebody like @JohnAdams.

From quite early on, I figured that habituation happens naturally, there's no way to really speed it up. At the same time, I wanted to be sure I did everything to heal, that I left almost no stone unturned, because my effort will be having a long term consequence. I recently counted up the things I gave a good try, there were 16. No gimmicky things Tonaki Tinnitus Protocol and not counting the minerals and vitamins I take like magnesium and D3 etc.

I realize this kind of obsession is not healthy or even useful for everybody, but I truly believe it saved my life and now I have a relatively normal existence with tinnitus being a minor hindrance. I believe I was a very bad case, even for Tinnitus Talk. My tinnitus was so bad I as unable to read a book, even had trouble with longer text messages online from friends. It was reactive to everything, especially synthetic sounds from speakers. Listening to music so low I could not hear any of the words would spike it to insane levels within 3 seconds, it took me half a year until I could listen to a song from start to finish.

I had earmuffs on when using the tap. Somebody folding together a paper bag would cause me to run out of the room. In a cold room in March in silence, my ears got hot and red from the insane tinnitus sound, it was drilling into my head and every second was torture. I could go on. I was sort of backed into a corner as well, had I not done something I would have gotten worse because the hyperacusis and reactivity were so bad and I was already at a breaking point and considering suicide.

At the moment, I have twice been able to withstand about 3+ hours in a crowded venue(without hearing protection) with my decibel meter showing on the phone an average of 70, with it spiking to 85 when somebody was speaking loudly. There was music playing obviously, which created most of the noise. No spikes, even temporary. This is a testament to how careful I've been with protecting while living like a hermit for almost 2 years and how much time, energy and money I have spent to heal.

Again, this is not for everybody, but I wasn't going to accept my situation and so I put a lot of effort into healing. I did a lot of things wrong with my recovery as well and tbh I kind of wish I had been even more obsessive. The important thing is I didn't sit idly by and believe everyone who said you just need to wait it out and habituate, which would have been impossible in my case anyways.

Reading it now, this post might sound offensive to some people on here which is not my intention, claiming you can heal from tinnitus meaning lower it's volume. I really believe it's possible, I know this from personal experience. There's no silver bullet and you need to do a LOT of research and experimenting and the first couple of months are crucial, if you miss that window you're going to have a harder time etc.

I have written my success story of what I did exactly, it still needs some perfecting. Though I don't think it's even that important to mention the things, everything I tried has a thread on Tinnitus Talk, I wish more people were experimenting diligently, thoroughly and using this wonderful resource fully.

 

There is no way of comparing each other’s tinnitus levels.
If yours was truly severe I think you would speak differently.
It is not about being outgoing - or having the determination to reclaim ones life.
It is about severity, intensity, volume, chaos!
The severest tinnitus will bring anyone to their knees.

‘The same will happen with you?’

So how would you know that?

All you have experience of is your own tinnitus.

 

Nobody can reduce our own tinnitus level for us.
On the field of Tinnitus sufferers, where we are all heroes, by necessity, there are no super heroes - only those with lighter afflictions.

What we do have recourse to is learning better, more effective coping strategies.
We can self cure Bruxism - thereby reducing our stress level and TMJ pain.
We can learn and practice daily, deep relaxation and meditation.
If we are realists we have to come to realise what this affliction really is, and develop a philosophy of stoical acceptance, which may help us to go forward to make the very best life that we can.
Just my view folks.

 

It's "fun with friends" for several hours vs. the possibility of having "a lifetime of debilitating tinnitus". Choose wisely, and don't do the crime if you aren't prepared to do the time.

 

It's almost to the point where there should be two separate categories:
One for mild/moderate.
One for severe/catastrophic.

Every time I read the type of a post to which you just replied, I'm thinking that the differences between the levels of intensity are literally spectacular.

Almost as if there were 2 very different, separate conditions under the same name.

One lets you retain at least some quality of life, the other one does not.

Those who get the milder type are very lucky, but every now and then some of them cross over to the dark side.

At which point they are absolutely horrified, as most of them had no idea such intense level even existed.

There are many posts just like that on here.

 

Just a point of clarification, I've been diagnosed with severe tinnitus since its onset. I have high & low pitch tinnitus. I've been dealing with this for some time and there isn't a day that goes by that I don't ask myself, what kind of day is it going to be for me today?
How do I know the difference between mild & severe tinnitus? Because I have both. My right side is mild and my left is severe.
My early days with tinnitus were truly difficult to the point of giving up a career that spanned 25 years. Luckily I have a wife who is understanding and helped me through the worst of this. She coincidentally also has tinnitus.
I've been through the worst and my goal here is to provide support & encouragement - but I sometimes miss my mark. My statement should have read, "Hopefully the same will happen with you."

 

Harley, as severe as my tinnitus is, I manage to live a good (mostly) happy life. I simply told myself that I wasn't going to be prisoner to my tinnitus any longer. And I do what I want to do - within reason. I'm no longer foolish. I know what caused my tinnitus and I avoid such circumstances like the plague (earbuds, clubs, etc). But doing what I want to do does have it's consequences at times (even with earplugs) and I pay the price that day or next. It's a balance between protecting yourself from worsening tinnitus and living a fairly happy life. It's been 9 years for me and it's been a game changer. As a previous poster commented, it's brought me to my knees at times and I quit my job because of it. It's taken its toll, but I'll be damned if I give in to it completely.

 

Good for you of course, but remember that tinnitus is a very subjective condition.
I can't hear what you are hearing, but remember that there are people out there whose tinnitus is much more intrusive than yours.
It could be literally 5x louder, or sharper (or whatever other unpleasant feature).
There are literally no limits to how bad tinnitus can get.

Would you still talk this way if your tinnitus had increased to those kinds of levels?
I very much doubt that.

The fact is that every single person out there has a certain natural limit as far as what tinnitus intensity level they are able to tolerate.
A big percentage of us here are quite literally hovering right around this point.

Once you lose your ability to sleep and relax, it is the beginning of the end.
Because you need those in order to live and function.
For example my ability to relax is non existent and my sleep has been compromised to the point, where it is right at the edge of non survivable territory.

It's not the matter of "giving in" or "not giving in".
What is the point of surviving (not living), if every single pleasure you once had has been taken away and replaced by 24/7 torture from which there is no escape?

 

@Harley
Now we're talking the difference between severe & catastrophic. I'm severe but admittedly not catastrophic.
That's a bridge I'm not looking forward to crossing.