How to Cope with the Unknown — Never Knowing How Your Tinnitus Is Tomorrow

[GeorgeLG]

@Forever hopeful, fear of the unknown is a natural and common human emotion, we all experience it at some time or another. I am a generally positive and hopeful guy but even I have my days. Since my last cancer surgery I have logged a few epic challenging days and that of course is when this fear or doubt comes to visit us.

I can tell you what I do. I usually say some version of this to myself. What has happened has happened and nothing can go back and change the past so I must accept where I am today. It's ok, life is filled with challenges for everyone. Every day we have an opportunity to do the very best that we can, that on any given day this can be another good day. There will be many. I always have some measure of control over my thoughts and emotions, including about this condition. If I work to envision better days in the future, better health and some measure of recovery from this I am actually influencing that outcome, making it happen. The converse is also true so I cannot dwell on the potential for a negative outcome, I might make it actually happen. This is what we have control over. Experience has shown me time and time again that this works. We have to have passion for what we want, not what we don't want. Nobody knows what tomorrow brings. The trick is to live in the moment and enjoy every good day and every good moment within a given day. They start to add up. If we are stuck with a cascading set of negative emotions and fears that we cannot escape then we have to ask ourselves why this is happening. It's not the tinnitus, that just showed up. Something else is bothering us and that's what we need to resolve. I have been in this place when I was younger, I was not always this positive. When I could not break the cycle of what if thoughts back then, my physical suffering got worse. The opposite has been true since then.

I go through a lot of what you have described with ear protection in the house and car just in case and looking weird out in public but this is us living our lives and still having good days and good experiences. You sound like you keep getting out there, living your life which is great. We wake up this morning ready to go find the joy that is available to us. We get older and some pain accumulates, it's natural as we age. Some of that pain is natural and expected. Suffering is optional. Between your Tinnitus Talk handle and your photo you seem like a naturally hopeful and happy person. You have a lot to work with, you are a kind and caring person. Use the techniques shared here to envision the days getting bettering knowing that you are actually influencing this. If you get stuck, get to the base of the pyramid and figure out what is really bothering you, what experiences in your life have made you fearful. There is healing in that journey. You deserve to be happy and we can find joy in every single day.

George

 

[Bruce NH USA]

So this week we lost another one of our group members, Brian P, to the horrors of tinnitus.

I have battled tinnitus on and off since 2015. I've had it come and last for up to two years. And then I've had it go. I've had hearing loss and associated worsening or different tinnitus sounds only to recover a year later.

The last two years I have battled bilateral high-pitched tinnitus that fluctuates wildly. I can experience long periods of time where it's barely noticeable and I think I'm improving. It can even be gone for days. And then I get days like today, where both of my ears are clamoring with a very loud high pitched hiss. It's been revving up for two days. And what's a little bit different about this time is that instead of it being predominantly in my right ear, it is in both and equally as loud. That has happened before but not frequently. And all the gains I think I've made come crashing down around me. All my hopes and dreams for the future seem to be in jeopardy again. Is it back for good? Is it going to just be this loud every day and not fluctuate? Is it going to get worse from here as I continue to age and my hearing continues to decline? I already have a pretty good track record of tinnitus changes as a result of even minor hearing loss. Am I going to get to a place where I'm permanently disabled and won't be able to work? I have kids to support.

Brian's death hit me hard. Because he had mild tinnitus that got worse. So much worse he couldn't live with it. My absolute worst fear. I fear that over getting cancer. I fear that over most anything. And the sad thing is I know it's coming because I will be 56 this year and I know that as I age my hearing is only going to decline. Perhaps I have prevented some small measure of decline by protecting my ears for the last seven years, but it is gong to happen.

So I ask those of you who have suffered from tinnitus much longer than I have, how do you cope with the unknown? How do you cope with not knowing that tomorrow will be the day it's 20 times worse for apparently no reason? I've read enough of those stories on Tinnitus Talk.

My CBT therapist would ask what if tomorrow is better? What if tomorrow there was no negative change? You've had many days like that. Why are you assuming tomorrow will be worse? Well, because I have those days when it is worse. And after I go through periods where it's really quiet it's like a gut punch when it gets loud and intrusive.

I am in no way comparing my experience to anybody else's, but I have to say that high frequency tinnitus is almost impossible to mask. Finding something that matches it in frequency and pitch has been nearly impossible.

Anyway, interested in any insights or tricks people do to stay focused and positive.

Hi Danielle,

I hope you are doing well.

My tinnitus has been quite bothersome, lately, especially since my ears have become very full on both sides. It could be allergies, but a tympanogram found that there is no fluid in my ears and the pressure is normal, so I wonder.

I have read that anxiety can contribute to not only worsening of tinnitus symptoms, but hearing, as well. When we have all that cortisol flowing through our body, my hunch is that it becomes corrosive, and eats away at parts of our body, including our ears.

I have mild hearing loss in both ears, so I was able to get hearing aids, back in January. I have had a huge tinnitus spike since the middle of November of last year, possibly because of the Moderna Covid booster. However, some doctors and therapists do not agree with that assessment, even though the initial prognosis was given to me by a noted ENT at Mass Eye and Ear. So who knows?

And I guess that's the main thing. Does it really matter how I got it? I did a couple sessions with Bruce Hubbard, and his attitude is it doesn't matter how you got it, and it doesn't matter what it sounds like. All that matters is that it is unimportant, and needs to be managed and put in its place. Acknowledge it, but don't focus on it. Easier said than done! But I do notice that when I don't listen to my tinnitus, it is less loud. And when I am extremely anxious, it gets louder.

I have days where I start out at 6:00 a.m. and the tinnitus is barely noticeable. It is very quiet. Then I start ruminating and obsessing about it, wondering if it will get louder, trying to listen to it, and voila! It gets louder.

I am 59 years old, and I, too, wonder if it will keep getting worse. Will the Susan Shore device help us? Will any of these new drugs help to restore hearing, and thus affect tinnitus? Bruce Hubbard says don't even pay attention to that stuff, it gets in the way of habituation. But I think hopefully I can do both. I'm trying to habituate, as best I can, but it's tough when you have these terrible tones screaming in your ears.

Stay strong, and best of luck!