Be Honest. Do You Still Enjoy Life?

Well I'm writing this after being up for 72 hours. I can't enjoy life without sleep. The past 4 years just feel like a bad, never ending dream. I'm not even getting tired anymore...

 

I wanted to come back and add something to this thread. I mentioned before that I have reactive tinnitus, and it can get LOUD at times. Despite this, I still feel that I have the ability to perceive silence... It's odd. But as I said, I had developed a mindset of accepting tinnitus, acknowledging that it can't hurt me, and it started to move to the back of my mind.

I also stopped lamenting on my life before tinnitus. Part of it was remembering that many people do have their tinnitus fade over time and others habituate. Remember, everyone is most probably going to get this thing sooner or later as age-related hearing loss sets in. Part of it came from letting go of my mentality of waiting for it to go away before I let myself enjoy life again. I decided that now was the time to enjoy life and let go of wishing for the ringing to stop (but be thankful if it does).

I've also had a weird visual aid in my habituation. If I had to pretend that tinnitus was a visual intrusion as opposed to an auditory one, I would see it as a red horizontal line obstructing the center of my eyesight. Then I imagine myself pinching this line between my fingers and pulling it through my face and behind my head where it would be out of the way and I could enjoy the scenery. I don't know if this helped, but I almost feel like it did.

My subconscious idea of "silence" has changed. I stepped outside the other evening. It was quiet, the weather was nice. I found myself enjoying peace and quiet, but... the ringing was still there and at a moderate volume I will say. I realized that this is was peace and quiet sounds like to me now. I still found the same peace in this as I had before I had tinnitus. I found it very strange, but I welcomed it. I think you will know when you have habituated once you are mentally synonymizing your tinnitus with the peace and quiet.

I hope this helps someone!

 

My experience is similar. I substituted your visual red line with positive self-talk and visualizing happiness alongside this. The first part of your description and my experience are identical. Good stuff.

Thanks,
George

 

It helped me. I agree with you that silence is subjective. To be fair, the feeling of "losing silence" has never been the largest problem of tinnitus for me. It was before I got my tinnitus. But now I think I've mostly just been generally annoyed at it, outside of the context of "not having silence" anymore. We can all find that inner peace, and that inner silence, without the "normal silence" that most people have. Some people go lifetimes with normal hearing and no tinnitus, without experiencing that inner silence.

 

I appreciate the sentiment, but being careful with our hearing from now on is just not enough to prevent this from getting worse for many of us unless one can also afford to be a recluse as well.

If you have severe tinnitus, then your ears are likely in rough shape and probably cannot handle even low/moderate levels of noise exposure without getting rapidly worse.

Even if you diligently protect your ears, this world is way too loud in so many ways that it’s virtually impossible to protect them enough to the point where we can all say “OK I’m safe now and can handle this - I just gotta maintain and get on with enjoying my life”.

But I do get what you’re saying and it could certainly be a valid and reasonable approach for some or hopefully even me at some point.

 

I agree. I've had worsenings in the last 16 months since my tinnitus became life changing, and I had it many years prior to that. It never gets better, only worse, despite efforts to protect. Some people have an increase in tinnitus simply from dental work that can't be avoided.

Anyway, after all this time, the fight or flight response that causes anxiety and depression cannot be turned off by simply "accepting" and talking back to it. It's automatic and is there regardless of how much I try to focus on other things, as well as the annoyance and distraction of the loud multi-tone variable tinnitus as well. I wish I had mild tinnitus of years ago - it was possible to ignore and move on back in those days. I absolutely do not experience anything close to silence anymore. I can find some enjoyment still, but it's not nearly the same as over 16 months ago.

 

I would possibly be able to enjoy life if my tinnitus would stop getting worse.

You can rigorously protect and isolate, but an acoustic trauma will eventually catch you in some way. All you can really do is delay any worsening, but you'll never escape it. And in the process you'll have absolutely no life and little joy.

 

Very true about acoustic trauma. You never know when or where, but you can count on it happening and tinnitus worsening.

 

But there are many people who have had tinnitus for decades and for whom it hasn't got worse.

 

I had tinnitus for probably two decades before it became problematic. I heard it at night, with headphones on, my IEMs in, and anywhere quiet. It eventually caught up with me. I feel the progression is logarithmic, as you worsen the less trauma it takes.

I see people here all the time who say they have had tinnitus for x number of years and all of a sudden it worsened to the point that they were driven to this forum. I've seen old members from before my time here return, struggling with worse tinnitus.

 

This video is very symbolic to me. I miss my silence like how the desert miss the rain.

In combination with my longing for silence, I also long for my old life, my old self (I'm getting older with new problems arising) and I miss my old loved ones. I had it all and didn't appreciate it like I should have. Now I'm a shell of my former self. It gets real deep for me because I had to miss funerals for people I really cared for

Everything But The Girl - Missing (Todd Terry...

Tinnitus ultimately won, and even if cured, and please God I do hope that time is soon, the time I lost to tinnitus will always leave a scar as time can never be replaced Just watching this video alone chokes me up thinking about the better days...

 

Never thought I will suffer in my life that much that soon. So no.

 

But you haven't seen those people who have permanently left the forum and/or who actually have had tinnitus for X years without it ever getting worse.

The problem is that this forum gives the perception that this is the reality of things, however, unfortunately, here is that small slice of the population affected by this cursed symptom the worst way possible.

 

We do not know this for sure. I can't find the survey results from people who left the forum, but I don't recall they all were doing that great. And who knows what happened to those who disappeared.

 

Again, this forum gives the impression that anyone with tinnitus is either damned or not doing well. You can't even imagine how many people out there have tinnitus, even moderate, and they don't care about it. Unfortunately this is a fact that we will never know and, in my opinion, the real reason why medical science is slow to find a cure.

 

Is this a marginalized, relatively trivial matter that most people with tinnitus don't care about?

1) Over 750,000 American Vets are so impaired by this that our Veterans Administration pays out over $2 billion annually for disability (and it is the #1 Medical Condition that afflicts Service Members; Dr. Shore herself described the pervasiveness of this in a Senate Subcommittee Hearing);

2) Given that 11 million Americans have jobs that subject them to truly dangerous levels of noise, there must be a significant percentage that will eventually have this to a debilitating degree;

3) My Audiology Group said that they now get at least one tinnitus patient for every day of the year they are open; my ENT Doctor said that his colleagues have encountered these same numbers, and have surmised that it is quickly becoming an epidemic condition for the Retiring Baby Boom Generation.

 

That's the same as me. Two decades before it suddenly hit a new level that affected my general well being so much. But over those two decades, it was slowly getting worse, and even though I wasn't feeling any anxiety about it at that point, I would notice it first thing in the morning in recent years, I already couldn't mask it with my white noise machine or fans as I had some years back, and I would often find my attention brought to it while using the computer in a quiet room. My sleep was ok, although I woke up too early most of the time. Once I was up and at work, out in public, watching TV, driving, biking, I never thought about it.

Early 2022 changed everything since it was suddenly significantly louder and heard while doing all those things. The shower is only time I can't really distinguish it from the shower sound - effectively masked. The fight or flight response kicked in shortly after the 2022 tinnitus increase, and I am still dealing with that 16 months later - anxiety, depression, and much worse insomnia (especially sleep maintenance and morning insomnia, but sometimes even bedtime insomnia).

I'm coming off a stretch of about 10 days of feeling depression through Saturday. Sunday was good and today so far. So, I have a window for a little enjoyment. I hope it lasts. I'm weaning off an antidepressant still, down to about 8% of the prescribed dose (16% of what I actually took for any length of time which was never fully effective), and I'm about to take it down a little more, so I hate to get back on it or any antidepressant at this point, but I might have to. I'm trying to hold out. I started taking 100 mg 5-HTP recently to see if that helps. A host of other supplements plus CBD/CBG/CBN/THC/D8 for anxiety/sleep haven't seemed to do much good. If I can keep anxiety and depression down and get at least 6 hours of sleep, I'll be able to get more enjoyment, despite the tinnitus, but that's still a struggle at this point.

 

Hopefully there will be better days. If not, then we will rest once our souls leave this world. It would suck that we didn't enjoy our very short time here.

 

Eh, there's a lot of people who don't get to enjoy their short time here, as dismal as it sounds.

We like to ask "Why me?" when really the answer is "Why not us?" There is nothing special about anyone in the end. Everyone is susceptible to get whacked with a disability. If it doesn't happen earlier in life, then as you age, you will eventually become disabled in some way, even if you are a pro at exercise and eating healthy and never get hurt.

100% of the world's population is just doing the best they can. Sometimes the best you can do is very little. You would be surprised how common it is to have a very bad quality of life for some reason.

It's all a mind game in the end. Some people manage to fight off the mind game to the natural end. Some people don't. Reality is painful, huh?

I just hope that whatever my end is, it is not overly painful and I am not alone.

 

Okay.

So, a month ago I would have not thought twice and said "Yes", I can enjoy my life as much as I did before I had tinnitus. But for about 10 days, I've had a rebound, and a couple of nights ago, I was miserable. Today, at the 10th day of the rebound, where I can clearly hear tinnitus, I would still say "Yes", I can enjoy my life.

What I have figured out in my journey is that it is not the sound of tinnitus that affects us the most, it is the emotion we attach to it. For me, the lack of ever experiencing silence was what hit me, and every time I thought about it, I felt down, depressed and hopeless. But then, one fine day, I realized that it doesn't have to be so hopeless. Yes, I cannot enjoy silence anymore, but silence is overrated. This is my new normal. My silence has a noise and I have no choice but to embrace it. I could either be miserable by attaching all negative emotions to it, or I could just accept that I can hear a noise over everything.

In the last 10 days, I have had several ups and downs. 2 days ago, I was almost crying out of desperation. I did not sleep the entire night and kept pacing, very anxious and nervous. Yesterday, my tinnitus decided to take a break and the volume decreased to a level where I could easily mask it. I did not hear it most of yesterday. But then, again today it decided to spike/flare up and I can hear it loud and clear.

Even with this noise I can hear, I want to assure everyone who is troubled with tinnitus that you WILL feel better. I know it is difficult, but stop attaching any negative emotion to your tinnitus. Stop thinking about how tinnitus negatively impacts your life. You may not succeed immediately but eventually you will. You will have long lasting mental peace. What we need is not just silence, but mental peace.

G'day.

P.S. - This is my first post on this forum!

I agree with you, but it will be true of any such forum since people who join these forums or look for help online are the ones who are struggling with their tinnitus. If you could just move on with your tinnitus, you would rarely join a forum to seek help.

It is true for me as well. When I first found this forum, my tinnitus had just started and I was miserable. I thought my life was over. All my posts would have been negative and sad. But, over the next 3 years, I never thought about visiting the forum since I felt much better and moved on. If I had visited, my posts would have been all positive and happy. Now, again, I have been struggling for the last 10 days and I am back here.

Having said that, a large majority of the population with tinnitus live a happy life with it, and just don't care enough for their tinnitus to have any significant emotional impact on them. I wish more people knew that.

G'day.

You're right.

It is our response to tinnitus and our fears that drive how we feel with tinnitus. Habituation does happen quickly once you realize that tinnitus cannot hurt you.

How do you feel now?

 

I did enjoy life for years, even with tinnitus. It was mild though, came from an allergic reaction as far as I know. But since 2021, when I got worse tinnitus, with hyperacusis and the new reactive tinnitus, I lost that time and I will lose more time. I have had no fun since then. I went to all kinds of doctors nationwide. Now I am just working on paying all the debt off to maybe start and begin anew, but... enjoying life is not what I would call it. I still hope to habituate and be able to ignore it eventually, but when I think of all the time I lost, I just get sad. So the answer for me is probably no, I don't enjoy life.

 

Keep in mind that those people who unfortunately have recently acquired tinnitus also subscribe. They, in the throes of fear, look for some hope after the damned ENTs have not helped them. However, for the most part, and I would also say fortunately, the latter leave the forum as soon as they get better or get used to it.

 

How can I enjoy life being homebound, unable to meet friends, unable to attend events, unable to love and be loved, and even unable to do dental work without worsening my tinnitus and having to take Prednisone?

People have different goals in life, mine was always not to be alone and I end up with one of the most isolating conditions imaginable, where you're disconnected with other people even if they're next to you.

And of course noise inside the head is always there.

 

I have had tinnitus for over 20 years. But it was mild for quite a few years, so it was the type of tinnitus that you could habituate to. But over more than 20 years, my tinnitus has NOT gotten better. It has continued to get worse along with more tones that can change day to day and even within the same day significantly. And when it's bad enough, mostly or completely unmaskable, the sympathetic nervous system kicks in the fight or flight response automatically and causes anxiety, and can cause depression, regardless of your emotional thoughts that it's just tinnitus. So, the feeling is worse now than 20 years ago - you can't be certain anyone in particular "will" feel better. That obviously doesn't happen a lot of the time.

Sure, with mild tinnitus, like I had much of the last couple decades, you can probably habituate to it and live life normally. But there are limits, as many members here can tell you. Gaslighting them won't help.

 

Of course, without a doubt.

Once you feel better, you move on. It is also a big part of habituation to not think about the tinnitus. Subscribing to such forums only reminds us of it.

G'day.

 

This is the part that really pisses me off. Like my friend suffering from bad back pain as well as tinnitus. Neither can be really readily seen. But he kept complaining about his back pain for years. Never mentioned his 30 year old tinnitus. Never. Only when I said I got it. Frankly I resent that. Just like his back problem made me think more about being careful about my back, the tinnitus would have me be aware of dangers to my ears - and brain.

I really believe people who suffer from tinnitus and do not warn others about it are selfish. I can't say they wish the same pox on others, but lack the charity to warn other people about something that often is avoidable.

 

He might not have "suicidal" type tinnitus. I have warned others about a grain vac noise, but they didn't listen and didn't use earplugs. Newspapers and other media should talk about it more. They probably do to a certain extent, but not enough. I often see people mowing lawn with a rider mower that have earmuffs on.

@gameover, have you ever had a sleep study done? I used a elastic mandibular advancer last night and seem much better. It looks like picture below. If you would happen to have any sleep apnea or jaw issues it could help your tinnitus.

 

It’s not necessarily about enjoying life per se for me, it’s more about trying to move on with life (whatever it brings) while being adapted to this condition.

That said, about two months ago, I would have said NO. I was pretty down then—massive tinnitus spike (temporary fortunately) and a lot going on in my personal life.

But since then, I've been speaking to someone who makes me incredibly happy. They've given me a renewed sense of hope for enjoying life again, despite my struggles managing severe tinnitus. I haven’t thought about my tinnitus much this past month actually. It’s blaring loud in my face as always, like literally nothing can mask it, but I had no real fixation or attachment for it. I also feel like it’s been on the more stable side—less variability in tones and loudness and lesser reactivity. A new personal best for me, all thanks to this person... feeling a bit more ‘alive’.

 

To be really honest, I don't talk about it to anyone I care about. I have a fear that everyone can hear this noise but are unconscious about it. Once you start paying attention to it, you cannot let it go. I don't want then to notice their tinnitus. I want them to be unaware of it.

I cannot imagine anyone I love living with this. I am much better than before, but I won't want this for anyone.

G'day.

 

That's utter nonsense.