Having Trouble Adapting to Fluctuating Frequency Tinnitus

[StephenM]

Hey all, my name's Stephen and I've had tinnitus for almost 6 years. It started in my right ear, where it remains, but I've since developed tinnitus in both ears in response to noises, notably fans, motors, anything steady like that. It's maddening because I feel like I've lost what used to be my primary line of defense for masking and coping. It's hard to tune out because it has a sort of fluctuating frequency; it isn't steady and monotonous.

Could really use some pointers. Thank you!

 

[Joe Cuber]

Hi @StephenM, sorry to hear about your reactivity. That can make it pretty challenging to mask. I wanted to ask you whether your reactivity is relatively recent. Did you have your tinnitus for 6 years prior to your reactivity starting? And do you know if there is any cause for the reactivity starting?

BTW, I have some reactivity too. My main, intrusive tinnitus started about 16 months ago, and my reactivity started about 14 months ago, and it was really berzerk when it first started, but has calmed down a lot since. I react to similar things--fans, AC, heaters. These days my reactivity sounds like a whistle.

What does yours sound like? Does it get louder and louder the longer you listen to something like a fan, or does it stay at a constant loudness?

 

[StephenM]

Hi @StephenM, sorry to hear about your reactivity. That can make it pretty challenging to mask. I wanted to ask you whether your reactivity is relatively recent. Did you have your tinnitus for 6 years prior to your reactivity starting? And do you know if there is any cause for the reactivity starting?

BTW, I have some reactivity too. My main, intrusive tinnitus started about 16 months ago, and my reactivity started about 14 months ago, and it was really berzerk when it first started, but has calmed down a lot since. I react to similar things--fans, AC, heaters. These days my reactivity sounds like a whistle.

What does yours sound like? Does it get louder and louder the longer you listen to something like a fan, or does it stay at a constant loudness?

Hey @Joe Cuber, thanks for your reply.

My reactive tinnitus started about a year ago, so five years after my main tinnitus. It started suddenly and seemingly without any cause. My fear is that years of listening to white noise to help me get to sleep was what caused it. While my main tinnitus is confined only to my right ear and is an alternating, high-pitched "beep" noise, the reactive tinnitus is more of a whirring/whooshing. The reactive tinnitus will get louder with the fan (as if it's "matching" the input) and ceases the moment the culprit (like the fan) is turned off. The main tinnitus seems to have a mind of its own: sometimes I'll go a month or two without it, and sometimes I'll go a maddening week with it.

How have you coped with your main tinnitus and reactive tinnitus?

 

[Joe Cuber]

Hey @StephenM.

Hey @Joe Cuber, thanks for your reply.

My reactive tinnitus started about a year ago, so five years after my main tinnitus. It started suddenly and seemingly without any cause. My fear is that years of listening to white noise to help me get to sleep was what caused it. While my main tinnitus is confined only to my right ear and is an alternating, high-pitched "beep" noise, the reactive tinnitus is more of a whirring/whooshing. The reactive tinnitus will get louder with the fan (as if it's "matching" the input) and ceases the moment the culprit (like the fan) is turned off. The main tinnitus seems to have a mind of its own: sometimes I'll go a month or two without it, and sometimes I'll go a maddening week with it.

How have you coped with your main tinnitus and reactive tinnitus?

You have an interesting case. We have some slight similarities. It's phenomenal that you can get a month or two off from your main tinnitus. That must give you some amount of relief to reset a bit before it reoccurs. I bet it sucks when it returns but it sounds like you can weather through it before your next quiet period.

Mine cycles but at a relatively higher frequency. I get a loud day (about 6/10) every 4 days on average these days. A loud day is typically followed by 2 milder days (about 3/10), then a quiet day (about 0/10). That's the typical pattern, but it does vary. My main tinnitus is in my right ear and my reactivity is in both.

It's good to hear that your reactivity ceases when you remove the external noise. When my reactivity first started, it was pretty crazy. It would react super readily to just about every noise, and if the noise was loud enough or sustained enough, my reactivity would spike and not settle until the next day. After about 4 months of that, the reactivity settled down, and after a year of it, it barely registers. These days, I have to concentrate to hear it. It's still there, it sounds like a faint whistle or a zing! whenever I'm hearing a noise like a fan or an A/C. And it rarely spikes. Like, I'd have to take a long airplane flight for it to spike.

My reactivity really freaked me out in the beginning. I had major panic attacks. If you ask me if I did anything in particular to treat my reactivity, I'd say yes. I followed my audiologist's advice not to overprotect. She told me to be in a sound rich environment as much as I could stand and to protect when it made sense (like, if I were vacuuming, that sort of thing). So, to start, I would listen to nature videos in the day a few times for about 20-30 minutes at a time. And I would go for short walks around the neighborhood. At night, I would listen to nature videos but at a volume that wouldn't spike my reactivity. Over time, I listened to sounds for longer periods and ventured out to louder places. Occasionally I would spike, but I kept at it. It took a lot of courage to trust that It was helping.

I know for some this approach doesn't work or actually makes things worse, especially if they have hyperacusis or noxacusis. But it worked for me.

As for coping, my biggest challenge was dealing with my anxiety and depression resulting from my onset. I went down hard and had to get on meds and seek therapy. Like for months. I'm in a much better place now. Not on any meds or seeing a therapist. Mostly I'm just annoyed at my loud days. I try my best to ignore and habituate, but it's a challenge since the loud days are such a contrast to the preceding quiet days.

How about yourself, how have you been coping with your main tinnitus and your newer reactivity? Do you know any causes for your main tinnitus or know why it reoccurs? Have you been listening to white noise at night despite your reactivity, perhaps at a lower volume? By the way, these days I've stopped listening to any sounds at night. I've gotten used to my tinnitus enough that I don't bother masking, but it still is damn annoying.

 

[StephenM]

Hey @StephenM.

You have an interesting case. We have some slight similarities. It's phenomenal that you can get a month or two off from your main tinnitus. That must give you some amount of relief to reset a bit before it reoccurs. I bet it sucks when it returns but it sounds like you can weather through it before your next quiet period.

Mine cycles but at a relatively higher frequency. I get a loud day (about 6/10) every 4 days on average these days. A loud day is typically followed by 2 milder days (about 3/10), then a quiet day (about 0/10). That's the typical pattern, but it does vary. My main tinnitus is in my right ear and my reactivity is in both.

It's good to hear that your reactivity ceases when you remove the external noise. When my reactivity first started, it was pretty crazy. It would react super readily to just about every noise, and if the noise was loud enough or sustained enough, my reactivity would spike and not settle until the next day. After about 4 months of that, the reactivity settled down, and after a year of it, it barely registers. These days, I have to concentrate to hear it. It's still there, it sounds like a faint whistle or a zing! whenever I'm hearing a noise like a fan or an A/C. And it rarely spikes. Like, I'd have to take a long airplane flight for it to spike.

My reactivity really freaked me out in the beginning. I had major panic attacks. If you ask me if I did anything in particular to treat my reactivity, I'd say yes. I followed my audiologist's advice not to overprotect. She told me to be in a sound rich environment as much as I could stand and to protect when it made sense (like, if I were vacuuming, that sort of thing). So, to start, I would listen to nature videos in the day a few times for about 20-30 minutes at a time. And I would go for short walks around the neighborhood. At night, I would listen to nature videos but at a volume that wouldn't spike my reactivity. Over time, I listened to sounds for longer periods and ventured out to louder places. Occasionally I would spike, but I kept at it. It took a lot of courage to trust that It was helping.

I know for some this approach doesn't work or actually makes things worse, especially if they have hyperacusis or noxacusis. But it worked for me.

As for coping, my biggest challenge was dealing with my anxiety and depression resulting from my onset. I went down hard and had to get on meds and seek therapy. Like for months. I'm in a much better place now. Not on any meds or seeing a therapist. Mostly I'm just annoyed at my loud days. I try my best to ignore and habituate, but it's a challenge since the loud days are such a contrast to the preceding quiet days.

How about yourself, how have you been coping with your main tinnitus and your newer reactivity? Do you know any causes for your main tinnitus or know why it reoccurs? Have you been listening to white noise at night despite your reactivity, perhaps at a lower volume? By the way, these days I've stopped listening to any sounds at night. I've gotten used to my tinnitus enough that I don't bother masking, but it still is damn annoying.

Hey @Joe Cuber,

I'm envious that your tinnitus follows something of a "clock", even with variations. Mine seems to have a mind of its own. The main tinnitus in my right ear will begin without warning and can last days, rarely more than a week or two, before I get a break. The reactive tinnitus never takes a break, so that a fan, A/C unit, white noise machine, etc. will always cause some kind of feedback. This is the maddening part, since it means I have to micromanage my sleeping environment in order to set up the perfect sonic atmosphere. I've been using wax earplugs to sleep; interestingly, this will "stopp" the main alternating tinnitus in my right ear; however, it's also revealed that there's a constant ringing in my right ear that isn't in my left. Anyway, my hope is that someday, somehow, the reactivity will cease, or at the very least reach a level at which I can tune it out.

I know what you mean about that initial panic. It's especially maddening because my work as a teacher requires me to read and write a lot -- two activities best done in relative silence. I never had panic attacks, exactly, but I would (and still do, on bad days) spiral into extreme depression and hopelessness. I'll think, "Why me? Why do I -- an otherwise healthy young man -- have this 'condition' that no one else can hear, that no one has exactly as I do, and which no experts seem to fully understand?"

Audiologists have, frankly, been little help. I even tried acupuncture once but that was wildly expensive and I'm not sure I buy it as a legitimate recourse. When I got an MRI a couple years ago, the ENT doctor hypothesized that a blood vessel might be knocking against the auditory nerve, causing the tinnitus. He said the most direct method of addressing this would be surgery, but an audiologist and a neurosurgeon both advised against this, saying this wouldn't be guaranteed to stop the tinnitus and that it might spark worse tinnitus, to say nothing of other risks. But there are days where I want someone to get in there to wreak havoc, to punish my body for giving me this maddening noise.

I'm so glad to hear that therapy did you good. I am seeking CBT at the moment. I rely on Trazodone to fall asleep, and while I of course wish I didn't have to use drugs, my doctor and all research I've read indicate that it's benign as sleep medicines go. As for other coping, I will sometimes "trade" the main tinnitus for the reactive; in other words, when the main tinnitus is acting up, I'll turn on a fan to mask it. This would be annoying while trying to sleep, but during the day, I'd much rather have the reactive. It's a daily challenge to accept the tinnitus. I wish falling asleep wasn't an exercise, I wish I could experience silence, and I wish there were a straightforward way to cure it. But those are the cards I've been dealt. I have a habit of falling into all-or-nothing thinking, tricking myself into thinking on the bad days: "This is what every day of my life will be like." Hence the search for CBT.

By the way, has your tinnitus ever been accompanied by pain or vertigo? Mine hasn't, but I've read that those symptoms sometime come with unilateral tinnitus.

Thank you for reading all this -- I hate that you've had to live with this condition, but I'm relieved to know that I'm not alone.

 

[Jupiterman]

@StephenM, sorry to hear of your reactivity. I've had reactivity since onset.

How does this affect your work? You must find that really difficult?

 

[StephenM]

@StephenM, sorry to hear of your reactivity. I've had reactivity since onset.

How does this affect your work? You must find that really difficult?

Hey @Jupiterman,

I'm sorry to hear you're also struggling with reactivity. It certainly affects my work (on my bad days, I fall into thinking I should change careers altogether since silence is such a foreign concept). Most of all, though, it affects my sleep. Without external noise, I'm stuck with my "main" tinnitus (and more susceptible to being awoken by other sounds since I'm a light sleeper); with external noise, I have my reactive tinnitus, which is very difficult to tune out and drives me mad. This is why I rely on Trazodone.

How about you? Does it affect your work/sleep as well? What do you usually do to cope?

 

[Joe Cuber]

The reactive tinnitus never takes a break, so that a fan, A/C unit, white noise machine, etc. will always cause some kind of feedback. This is the maddening part, since it means I have to micromanage my sleeping environment in order to set up the perfect sonic atmosphere.

I can totally relate @StephenM, having to deal with reactivity especially when trying to sleep can be an exercise in total frustration. It took me a good long time to get used to it. Between my main tinnitus and the reactivity I used to experience, I favored hearing the reactivity if it meant masking my main tinnitus, because my main tinnitus is damned irritating.

I've been using wax earplugs to sleep; interestingly, this will "stopp" the main alternating tinnitus in my right ear

That is interesting. By "alternating", I'm assuming you're referring to the tinnitus that comes on suddenly and lasts a week or two. So you're saying by placing a wax earplug into your ear causes that tinnitus to cease? That's pretty wild.

I never had panic attacks, exactly, but I would (and still do, on bad days) spiral into extreme depression and hopelessness. I'll think, "Why me? Why do I -- an otherwise healthy young man -- have this 'condition' that no one else can hear, that no one has exactly as I do, and which no experts seem to fully understand?"

Man, I can so relate to this. It's like this no-win condition that you're suddenly subjected to, with no trade-off or cost benefit. Just a net negative. The only silver lining, and it's the thinnest of silver linings, is that my tinnitus caused me to take care of longstanding health issues that I've carried with me in my vain attempt to silence my tinnitus, including getting a CPAP machine for sleep apnea, seeing a chiropractor to deal with my rather poor back alignment, and (the big one) learning about CBT which completely 180'ed my mental health.

I'm so glad to hear that therapy did you good. I am seeking CBT at the moment.

Ah that's interesting, let me know how it goes for you. For me, it was a game changer. It didn't really change my tinnitus at all, directly at least. Perhaps by lowering my anxiety, it has had some kind of indirect effect. But CBT has changed how I view the world in general and my tinnitus in particular.

I rely on Trazodone to fall asleep, and while I of course wish I didn't have to use drugs, my doctor and all research I've read indicate that it's benign as sleep medicines go.

Trazodone is what I used to take to help with sleep. I took it for months with no adverse effects, other than helping me fall asleep. I rolled off of it last year at some point, but it got me through the roughest patches. I hope it does you well.

By the way, has your tinnitus ever been accompanied by pain or vertigo? Mine hasn't, but I've read that those symptoms sometime come with unilateral tinnitus.

My tinnitus has never been accompanied by pain or vertigo. At one point, my left ear (my better ear) started aching, but I realized it was because I was clenching my jaw a lot as a stress response to my tinnitus. Once I stopped clenching so much, that pain subsided.

Thank you for reading all this -- I hate that you've had to live with this condition, but I'm relieved to know that I'm not alone.

I understand the sentiment. It can be so therapeutic to talk with others that can intimately relate with what we're going through.