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

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.

 

Hello @Forever hopeful. I’ve had tinnitus since 1995, and it was first hard but I got through it. I got books from the library and I truly thought I was the only one with it. Like you, it broke me, but I never gave up and slowly after many months I habituated.

There were times when I heard it but I ignored it. I just kept going.

And that’s all we can do.

However, fast forward to 2021 and my tinnitus magnified followed by hyperacusis.

I’m ten months in now with my second journey and I am 56. I do get scared when I read some of the horrific posts and I cry when I read them. But this is our story. Every day is different. You can do this.

Sending love and prayers.

 

It's interesting that it can come and go for you. Almost seems like there's a specific reason like tension, ETD or something else.

I've only had tinnitus and hyperacusis for a year but it's constant. With some fluctuations.

I really think you are strong and will take it head on without a problem. Hoping for the best.

 

As the old song goes, some days are diamonds, some days are stone.

I've not lived with tinnitus that long but in the 4 plus years of high pitched ringing and hissing that comes and goes, I've found that my hearing aids have truly helped with a white noise app on them. Some days I have the app down low, then some days where even the wife can hear the app in my ears.

I have been able to ignore it by finding a project that takes my mind off the tinnitus. I use no medication at all as I don't believe in it.

 

Very understandable fears.

I try to look at it this way... None of us on this planet suffering from a chronic condition or not have any idea what could happen at any moment. None of us no matter the shape we are in are guaranteed anything.

Just try to enjoy your good days and be thankful for what you do have is what I like to do.

Hope you feel better soon.

 

That's just very high cope and completely in black and white. If I said the exact same thing towards someone strapped to a bomb with an unknown timer you would call me insane.

 

Thank you so much for the support. I appreciate it. I do really freak out when I read some of the stories about people who had tinnitus worsen appreciably after it being stable for a long time.

Wow you got tinnitus young. So sorry.

Do you have any sense as to why yours worsened? Have you had a change in your hearing threshold for example?

 

Thank you for your kind words. I am so sorry you’re dealing with this as well. When I have had tinnitus before, it never fluctuated. It stayed exactly the same. There was no variability. And then it went away, and my hearing returned to normal .

Some days I don’t feel strong at all.

It is interesting that it varies and comes and goes. Or at least when it goes it’s so ridiculously quiet that I can barely notice it plugging my ears.

I just completed a three month round of physical therapy for TMJ and my neck. It does get appreciably louder with neck, jaw and head movement. I suspect the physical therapy may have led to some improvement. However, my benefit ran out a month ago and now it’s worsening. Seriously wondering if there’s a connection.

I have good health insurance but a crappy benefit for physical therapy. Hoping I can find a way to get some more physical therapy covered.

Thanks again.

 

Thank you for your reply and support. You mentioned hearing aids. Do you have hearing loss? All my hearing is still with a normal limits although it’s getting towards the lower end of normal. It will soon drop off to mild loss, which I’ve had happen before but fortunately recovered from.

According to my ENT, I’m really not a candidate for hearing aids. Perhaps the maskers, although white noise does not cover my tinnitus. Too high pitched. And I find pink and violet noise very annoying although it does closely match my pitch and frequency.

 

Your therapist is spot on.

Why fear the unknown? - especially since it's out of our control anyhow (as long as we protect our ears when we should, and so forth... list goes on).

You tell me you have many good days in between. Hold on to that, embrace it. It's a good sign after all! Good days will come and go. Today might be bad, but after a bad spell there is a good chance something better will turn up in the end.

I have a lot of these fluctuating periods myself, and I know "the punch in the gut" feeling after a good period. But as time goes by, many of us do get better on coping mechanisms to look forward even on the darker days.

 

Be grateful of those quiet days.

 

You know that old saying, "Relax, nothing is under control"?

I do relax sometimes, when I get too tired of being scared about the future.

And trust me, it's the greatest feeling, to stop fighting and not giving a damn.

Just try and enjoy every good moment. I guess that's what life is all about.

And if you don't have good moments anymore, remember that nothing lasts forever.

 

Mine fluctuates so much I can’t even tell anymore lol.

I had a period of worsening and worsening for 2 weeks, then had 4 out of 5 days with very low tinnitus and tones, and then it went back to my baseline of “who knows what it’s going to do hour to hour” tinnitus.

Just like you, every time it gets worse I’m thinking here we go, I’ll need months of habituation.

I have objectively worsened, but still tolerable as my brain and anxiety has been adjusting each worsening. I’m spiked right now right ear from playing drums on the phone, but I am trying to live my life.

Hearing protection when driving and none at home. Attempting stores without earplugs again too.

 

I do. It gives me hope for the future.

I see from your info you have had several increases in volume. I am so sorry. Do you know why?

 

Thank you for your support.

 

Forever Hopeful,

As someone who has had tinnitus since 1996, I can tell you that it doesn't always get worse as you age. I'm 61, and my hearing is "perfectly normal" (according to my ENT) for someone my age. I started hearing a high-pitched hissing 26 years ago this month for reasons that were never discovered (despite four MRIs and every medical test you can imagine). A few months after the hissing began, a new sound entered the mix - a low-pitched humming. I habituated to the hissing within a couple of months, but the humming destroyed my life (if you search my other posts, I go into more detail about this).

After not being able to detect a physical cause for the noise in my head, my doctor put me on an antidepressant. I tried my first one in 1999. Some worked better than others, and a few even eliminated that awful hum for several years.

As for masking, I tried using sound machines at night for sleeping in the early days, but they didn't help. In fact, they just drew more attention to the noise I was trying cover up! But some people have great success with them.

Two weeks ago, I had a relapse of the humming after not hearing it for four years. (I always hear the hissing, but I can pretty much ignore it). When the hum returned on March 27, it was like someone turned all the lights out. I felt betrayed by the medication I was on for "not doing its job." But the truth is, I had been on this drug (Lexapro) for 15 years. Last week, my doctor wisely switched me to a new AD called Prestiq. He said that after 15 years on the same AD, it was time for something new

Will this drug help me turn the lights back on? No miracles expected, but I do feel better after having been on the new AD for a week now. And the humming in my head has quieted down. It may come back tomorrow, or it may be absent for another four years. But I'm willing to stick with it and give it a chance.

Your comments about an unknown future really resonated with me. You feel like everything is going to be different if the tinnitus wins. The dread is unmistakable. So if you've never tried an antidepressant, you might consider talking to your doctor. I resisted it for years, but I'm glad I gave it a try. It probably saved my life.

Please keep us posted as to how you're doing.

 

Thank you for the support.

Do you find driving in cars too loud? I don’t wear earplugs in the car or in stores. I wear them if I go to dinner and the restaurant is too loud. I wear them if I go to a house party and everybody screaming at each other because it’s too loud. I have them on me at all times. I use them at the movies. I have to take my son to a show in a week. I’m wearing my earplugs which are custom-made musician’s earplugs and I’m bringing ear defenders. I don’t care how stupid I look. I know it is going to be loud I also have a decibel meter on my phone. Once things start to get into the 80s dB wise I put my earplugs in. I have 15 dB, 25 dB and 30 dB filters depending on the noise level I am trying to decrease.

 

Fear of the unknown. It’s a terrible thing. Feelings that scare us; defy us; torture us; keep us restless at night and wandering great distances during the day—not by foot, but by mind…what may happen, what may not. The worries keep us company faithfully, though they’re uninvited. Like stewards of the mind who don’t have our best interests at heart, they suggest misfortune; thrive on it, even. We can live and suffer from their agony, yet never see it come to pass, as it’s often misguided, the product of our own mind’s eye. But that doesn’t make life easier. It’s the worrying that kills us, really.

@Forever hopeful, you inspired me to write that. I think a lot of times our worries don’t come to fruition. I’ve heard that most of the anxiety we experience doesn’t pan out the way we fear it will. But I do worry about my future big time, as I’m having similar tinnitus problems. Mine is high frequency and not maskable. I try to keep positive with prayer. I believe in God, so I’m praying a lot.

What makes my tinnitus excruciating, though, is that it’s a feeling, too. It’s not just a sound. It feels like electrical currents with zapping. It actually hurts. I have depression and PTSD symptoms from the trauma of all this.

 

My hearing loss is way down. I went years with no hearing protection from screaming saws in a sawmill, to 30 plus years working in the timber industry felling trees with chainsaw. So finally 3 years back with tinnitus and hearing loss I got hearing aids. Tinnitus is very high pitched but the white app blocks it out. For me it has made a big difference to coping, plus just ignoring the damn thing.

I get deeply sad when I read about suicide. We lost a son to suicide. The person who does this, doesn't realise that the people who loved and cared have died right along with them. My advice is when that feeling strikes out as the easy way out, believe me it's not. Reach out for help, talk to someone, anyone who will listen.

 

Things seem too loud or not loud enough all day. It fluctuates quite a bit.

 

It happened following major surgery, total hysterectomy, 12 months ago, but there were complications 4 1/2 hours into the surgery.

It was benign thank goodness.

But the tinnitus magnified slightly followed by hyperacusis a month after surgery.

My hearing test showed only slight hearing loss.

Do you have hyperacusis with things seeming loud?

 

I've suffered from tinnitus about the same amount of time as you have @Forever hopeful and I'm in pretty much the same sport as you are, struggling with a new worse tinnitus as of recently after years of what I considered full habituation.

My tinnitus never went away, I've heard it every single day since 2016 and it has changed during these years before. I've been through spikes that have settled (or I've gotten used to them) and I've developed more sounds and tones over the years. My tinnitus has also gone from being only in one, to both ears over the years. I have both tonal tinnitus as well as pulsatile in one ear when lying on it due to SCDS. So I never stopped hearing my tinnitus, or noticing it, it just stopped making me suffer after about 1.5 years in the beginning I'd say.

Since my new severe spike from COVID-19 (I was fine with both shots but when I got the real deal that was it) I'm just back in that desperate place. It's 2 months now since this spike began, it fluctuates and today I am just in a panic from the screaming in my ear. I've really tried to relax as much as I can, tried to lean on the knowledge that I've done this, survived this, got through this before. For some reason I don't know, this time is worse than any of the earlier spikes, at leas mentally I'm struggling more. Maybe it's because I had started to trust that my t had settled down to some kind of baseline for so many years with just minor spikes, that getting hit with this major one through me for a curveball? and now I'm in for the unknown like you mention. Will it pass, will it stay like this, or worse, will it get even louder than this? And what about the next COVID-19/flu or something similar? I have half my life still to live if I'm lucky, how long will I be allowed to live with a tinnitus that is even survivable if not 100% enjoyable? Like you, I have no answers.

So at the moment I'm killing it with humour. I recently named my new and 'improved' tinnitus Gertrude. Because she's a rude intruder. She likes to sit on my shoulder and sing her heart out, into my ear(s). She's loud and she's annoying and she's relentless. She has no sense of music either. But she's my guardian angel I try to think. Sitting there on my shoulder, following me along, day and night. Just wish she'd shut up with her tonedeaf singing

 

I am so sorry to hear. Glad you are ok.

I do not have hyperacusis.

 

I am sorry to hear that things are worsening. I hope things improve.

Did you have your hearing tested after your COVID-19 spike? COVID-19, at least the older variant, prior to Omicron, was known to cause hearing loss and consequently tinnitus.

I do appreciate your humor!

Hang in there. Mine is very loud today but was quieter yesterday.

 

I’m so glad your hearing aid and masters help.

My dad was a furniture maker. Spent years with saws screaming in his ears, and he has appreciable occupational related hearing loss. No tinnitus through. Go figure. My mother has age related hearing loss and no tinnitus. Yet my aunt and cousin have it and it doesn’t bother them. My aunt only really hears hers at night but my cousin hears hers all the time, so it’s clearly more intrusive. While it recently got worse she’s pretty good at managing it. And I also just found out the other day a friend has it in one ear. Only hears is it when she goes to bed at night but still, doesn’t bother her. I want to be like them!

I want to convey to you my heartfelt condolences on the loss of your son. I can only imagine how devastating that is for all of you. I couldn’t imagine losing my child or anyone that I loved that way.

I’m a psychotherapist by training so I spent many years treating people with various behavioral health conditions and mental illness. I no longer practice, but spent many of hours assessing people for safety. And I definitely believe that suicide is a permanent solution to what is usually a temporary problem.

While I don’t think that would be anything I would do, sadly, I can see why someone with this condition, which for all intents and purposes cannot be treated, would feel utterly hopeless.

Thanks for your support.

 

Thank you for all of your support.

I’m so sorry about your relapse. That is one gut punch for sure

It is interesting you write about the hum in your head. If I’m in a dead quiet room after a period of time I too can detect a hum and it comes from the middle of my head. Or at least that’s how I experience it. Now I can be in a quiet room and talking to people and I won’t hear it ever. It has to be in dead silence, even a slight fan will cover it and it takes a minute or so before I start to notice it. I never had that before. Noticed it about a year ago.

I, however, do not sleep in silence. Ever. I sleep with my cell phone by my head (probably radiating my brain) playing nature sounds that are high-pitched enough that I can sleep. I’ve not been able to figure out how to hook my phone up to two speakers and have them on each side of the bed. I have a bunch of sound machines and none of them make a noise that’s high enough in frequency and pitch to blend for my tinnitus. So I’ll probably get a brain tumor.

When I first got tinnitus in 2015, they put me on Zoloft. It was like a miracle drug. It didn’t really make my tinnitus go away but it certainly helped me cope with it

I was on it for a few years and managed to gain a good 60+ pounds on it. When I finally decided to come off of it, I had terrible discontinuation symptoms. I do think part of that was related to the fact that my doctor had me on a very high dose. Certainly higher than it should’ve been.

I have toyed with the idea of going back on it but I have to say that being on Tinnitus Talk certainly creates additional anxiety around the use of ADs. They can cause or worsen tinnitus. That didn’t happen to me. And according to my prescriber she has never had a patient reports such symptoms. My son has a psychiatrist who prescribes his ADHD medication and he also says he’s never had anyone experience tinnitus as result of these meds. But it is documented and I just can’t bring myself to take the pill. And I know that they would probably help me a lot and I know they have helped many.

Right now it sounds like I have jet engines in my ears. Yesterday it wasn’t so bad. A little on and off but not all day. It is so maddening as it has no rhyme or reason.

Thanks again and hope things improve for you as well soon.

Danielle

 

Thank you for the support. I am sorry to hear of your suffering. The inability to mask is so awful. I can handle it when it is not that loud and just a whine I hear in the background. My right ear is worse than my left, but when they both get going and are really loud, it is just so intrusive. It is like 2 jet engines on my ears. I try to use a heating pad for my neck to soothe myself.

It does not hurt and I don’t have zapping. I feel for you.

This is traumatic. For sure. I pray we both improve.

 

@Forever hopeful,

I hope you see this reply. Your post here speaks to me so much. I have a very similar experience as yours, although I'm relatively new to this (for 2 months now).

I too get fluctuating tinnitus day by day. Some days it's quiet, other days it's a cacophony in my right ear (left mostly just has reactive tinnitus). I don't know why, but whatever I wake up to is what I get that day, like a roll of the dice. I have the same anxiety-induced worries about it staying for good or getting worse.

I wanted to ask you whether you have a similar fluctuation, at the sleep boundary. I know what kind of day I'm going to have upon waking up.

I'm now on anti-anxiety/anti-depression medication due to the anxiety and depression I'm experiencing, the randomness really has gotten to me.

I wish you the best, and hope to hear more about your personal experience, thanks.

 

Hello Joe,

I’m so sorry that you’re going through this. And it’s really, really, really hard when you’re new to it.

Interestingly, what I get in the morning is not always what I end up with during the day. But it depends. Sometimes it is. I do find that when I first wake up in the morning it’s very quiet. I find it does tend to get worse as the day goes on. I just read a very interesting article around tinnitus and sleep. One of the interesting findings was that with mice, low level brain waves during sleep seem to positively impact tinnitus. If memory serves, I think the lower brain waves had an impact on the region of the brain they attribute to the creation of the tinnitus sound. However, there have been times in the past when I have woken up and it’s been really loud and screaming.

What makes mine so annoying is that, well it’s tinnitus and annoying, but beyond that, is the unpredictability of it and the inability to figure out what’s causing it to get worse and then better and then worse again.

I do think allergies have a major impact on my tinnitus. I’ve definitely have an improvement in it when I am compliant with my three allergy medications; one of which is an inhaled corticosteroid that I think has really helped with my Eustachian tubes. I used to get a feeling of pressure in my left ear and I have a weaker ET in my the left ear. Since I’ve been using the nasal sprays the pressure has gone.

My tinnitus journey started back in 2015. If you read some of my other posts there is more detail. I’ve had tinnitus as a result of acoustic trauma that eventually healed, and I’ve also had tinnitus as a result of mild hearing loss that also ultimately healed. That tinnitus was very steady. It never changed tone. It never changed in volume. It went away when I healed both times. So I often wonder if fluctuating tinnitus have some sort of different etiology than hearing loss.

I hope the anti-anxiety and antidepressant medications are helping.

Hang in there.

 

Hi @Forever hopeful - Thanks so much for your reply. You're right, it's been pretty tough coping with this so far. I spiraled pretty hard in the beginning. Long story short is that I'm on anti-anxiety/anti-depression meds and seeing a therapist.

Fluctuation is pretty tough. As you've pointed out, it's the randomness that's unnerving. I have a hard time settling down at night since what comes in the morning is my fate the next day.

Interesting that you've found a correlation with your allergies. That sounds promising, like you have some control over the intensity at least (I hope)? Like, can you have good days if you stick with your allergy medication?

Thanks again for taking the time to reply. I've read a number of your threads, since your experience is one I can really relate with. I hope the best for you and will remain active on this forum, so hope to see you around. Hang in there too!