How to Manage Reactive Tinnitus Setback?

Paulie87

Member
Author
May 12, 2014
55
Central Coast NSW, Australia
Tinnitus Since
12/2009
Cause of Tinnitus
Unknown
Hi All,

I've been dealing with tinnitus for almost 16 years now. The first six months were hell, but I eventually habituated to it. Since then, I've had a few flare-ups, but nothing that lasted more than a month or so.

I was diagnosed with Ménière's in 2016 after experiencing dizziness, and I developed a new low-frequency tinnitus that reacted to sounds. Thankfully, this low-frequency tinnitus eventually settled down a lot.

For about seven years, I wasn't overly bothered by tinnitus until this May. I went to a concert wearing musicians' earplugs and took them out for a few songs, but I didn't think it was a big deal at the time. Afterwards, I struggled with bad tinnitus for about a month and also developed a Lorazepam addiction, which was very hard to stop.

The tinnitus returned to baseline about a month ago and I assumed things were better. I hadn't done anything reckless or exposed myself to very loud noise, but last Sunday, out of nowhere, my tinnitus became loud again and started reacting to external sounds. I got extremely stressed, and it triggered some kind of fight or flight response. Each day I woke up wanting to die, and I noticed my tinnitus was low in the morning but would get significantly worse as the day went on.

I'm reaching out to ask how others manage reactive tinnitus, since the usual masking techniques don't work for me and instead make the tinnitus ramp up. The stress is unbearable, and I know it isn't helping. A few days ago, I got so overwhelmed that I attempted an overdose on Orphenadrine (a muscle relaxer) and ended up in the hospital. I'm now dealing with the withdrawals from that, 48 hours later.

I have a beautiful wife and two beautiful kids, and I don't want to lose them. But I feel my anxiety around this condition is pulling me into a very dark place, especially when the tinnitus is reactive and even ramps up with something as ordinary as traffic noise. I just can't seem to escape it.
 
I hear you. I'm sorry to hear you took an overdose. I get how you feel. My reactive tinnitus is triggered by traffic noise, wind, bird calls, and aeroplanes flying overhead, and you're right, there's no escape or peace from it. I also experience a burning sensation on my scalp, and I struggle to sleep. People do a lot of DIY near me, and my nerves are on edge all the time with lawnmowers going, dogs barking, and saws going. It's relentless. All medications seem to exacerbate the tinnitus. I don't know what to do either, as I feel suicidal too.
 
When you say reactive, do you mean your baseline tinnitus jumps up to compete with external sounds, stays elevated after, or a different sound is generated on top of external sounds? If it's the last one, you may have dysacusis.

After 20 years of stable tinnitus whilst still playing in rock bands, mine became reactive after playing a very loud gig 2 years ago, but it also triggered dysacusis, so all white noise, such as fans, water, traffic, wind, etc, produces tonal beeps and whistles in addition to my regular tinnitus.

No one seems to understand the mechanism for reactive tinnitus/dysacusis very well. However, as you pointed out, stress appears to play a significant role.

Is your Meniere's unilateral, as is most often the case? And does this reactive tinnitus affect one or both ears?
 
I hear you. I'm sorry to hear you took an overdose. I get how you feel. My reactive tinnitus is triggered by traffic noise, wind, bird calls, and aeroplanes flying overhead, and you're right, there's no escape or peace from it. I also experience a burning sensation on my scalp, and I struggle to sleep. People do a lot of DIY near me, and my nerves are on edge all the time with lawnmowers going, dogs barking, and saws going. It's relentless. All medications seem to exacerbate the tinnitus. I don't know what to do either, as I feel suicidal too.
Ditto. My neighbors just love their leaf blowers, too. Can't even walk in the neighborhood anymore.
No one seems to understand the mechanism for reactive tinnitus/dysacusis very well. However, as you pointed out, stress appears to play a significant role.
Honestly, my tinnitus will react to something like going into a store (not stressful) and then stay elevated until the next day. Or maybe the stressor is just the hearing loss I have, but sometimes I can be completely "un-stressed" and it will just start out of nowhere. But mostly it is reactive to fans, sizzling, running water, HVAC.
 
I think reactive tinnitus is caused by damage-beyond-damage.

Your brain hears a lot of different frequencies from 'traffic-noise'. The brain is perhaps filling in the spaces for the numerous frequencies you have lost hearing, hence the reaction.

This is similar to how the blindspot in your eye works.
 
No one seems to understand the mechanism for reactive tinnitus/dysacusis very well. However, as you pointed out, stress appears to play a significant role.

Is your Meniere's unilateral, as is most often the case? And does this reactive tinnitus affect one or both ears?
The stress certainly made it a lot worse. It sounds to me like the tinnitus increases with external sounds and then returns to normal soon after they stop. The Meniere's is unilateral in my left ear only, and it appears the reactive tinnitus affects my left ear. I've considered wearing an earplug in that ear permanently; however, I'd still likely experience the base tinnitus.

I used to experience whistling and other noises, as you mentioned; however, those have mostly gone away.
 
I think reactive tinnitus is caused by damage-beyond-damage.

Your brain hears a lot of different frequencies from 'traffic-noise'. The brain is perhaps filling in the spaces for the numerous frequencies you have lost hearing, hence the reaction.

This is similar to how the blindspot in your eye works.
This is exactly what my ENT has told me. He said that even though my hearing isn't poor, it's not perfect due to Meniere's, & he believes it's the reason why I refer to it as reactive tinnitus & hyperacusis fluctuates a lot, as my brain is filling in frequencies.

Interestingly, yesterday I couldn't even listen to music without my tinnitus reacting, and today I was able to listen to the same music with no issues, so I'm sure there is fluctuation happening in my hearing.
 
triggered some kind of fight or flight response
There's definitely a psychology to dealing with tinnitus. Perhaps more so where worsenings after long periods of stability are concerned.

My tinnitus was stable for circa 25 years until it went off like a crazy firework (including reactivity) after excessive headphone use about 7 years ago. So I completely understand your predicament, particularly that feeling of being so overwhelmed by the sheer unrelenting nature of this condition that it can seem impossible to ever find a way to accommodate it.

Being able to mask kind of gave me some sense of control over the situation; however, once the reactivity prevented me from masking, it felt like the condition had really backed me into a corner with nowhere left to go.

The way I eventually dealt with this scenario was to actively cease masking. The reason for this was really just practical - not masking was better than masking with all of the unwelcome cacophony that reactivity causes. In other words - i was able to find a way to a place that was better.

It didn't matter how slight or how much better; just having that small sense of a practical option helped add some perspective and calm down the fight-or-flight response, which is crucial. @MindOverMatter has been in the trenches with this stuff and has some good advice.
 
There's definitely a psychology to dealing with tinnitus. Perhaps more so where worsenings after long periods of stability are concerned.

My tinnitus was stable for circa 25 years until it went off like a crazy firework (including reactivity) after excessive headphone use about 7 years ago. So I completely understand your predicament, particularly that feeling of being so overwhelmed by the sheer unrelenting nature of this condition that it can seem impossible to ever find a way to accommodate it.

Being able to mask kind of gave me some sense of control over the situation; however, once the reactivity prevented me from masking, it felt like the condition had really backed me into a corner with nowhere left to go.

The way I eventually dealt with this scenario was to actively cease masking. The reason for this was really just practical - not masking was better than masking with all of the unwelcome cacophony that reactivity causes. In other words - i was able to find a way to a place that was better.

It didn't matter how slight or how much better; just having that small sense of a practical option helped add some perspective and calm down the fight-or-flight response, which is crucial. @MindOverMatter has been in the trenches with this stuff and has some good advice.
It's definitely a mental thing. Last night it was blaring in bed with nothing to mask it, but I decided I wasn't going to let it upset me. It was amazing how quickly I was able to shrug it off, even without any background noise.

This morning I woke up with the same noise and felt annoyed again. I don't know how to get my brain to stay out of fight-or-flight mode. It seems that the sooner you can convince yourself that this condition sucks, but isn't worth obsessing over, the better off you'll be.

Don't get me wrong, I'm still praying that Dr. Susan Shore's device works and isn't just another Lenire. I'd buy it in a second if it could lower this noise by even half.
 
In other words - i was able to find a way to a place that was better.

It didn't matter how slight or how much better; just having that small sense of a practical option helped add some perspective and calm down the fight-or-flight response, which is crucial.
So your tinnitus became reactive, and you managed to calm down to a better place?

You've said nothing of how you achieved this.

Has your reactivity changed at all?
 
There's definitely a psychology to dealing with tinnitus. Perhaps more so where worsenings after long periods of stability are concerned.

My tinnitus was stable for circa 25 years until it went off like a crazy firework (including reactivity) after excessive headphone use about 7 years ago. So I completely understand your predicament, particularly that feeling of being so overwhelmed by the sheer unrelenting nature of this condition that it can seem impossible to ever find a way to accommodate it.

Being able to mask kind of gave me some sense of control over the situation; however, once the reactivity prevented me from masking, it felt like the condition had really backed me into a corner with nowhere left to go.

The way I eventually dealt with this scenario was to actively cease masking. The reason for this was really just practical - not masking was better than masking with all of the unwelcome cacophony that reactivity causes. In other words - i was able to find a way to a place that was better.

It didn't matter how slight or how much better; just having that small sense of a practical option helped add some perspective and calm down the fight-or-flight response, which is crucial. @MindOverMatter has been in the trenches with this stuff and has some good advice.
Hope you're doing well, mate! It seems like you're in a better place these days 👍

You're absolutely right that small things, like adding perspective and not giving this condition so much space in our lives, can make a big difference.

@Paulie87, it takes a lot of practice and inner strength to accept the situation and keep moving forward, despite all the "why me" and "what if" questions. Those questions don't make any real sense; they only drain energy and make everyday life more difficult.

When you reach the point where you can stay calm despite the constant noise, your brain begins to pay less attention to it. The sound is still there, but over time it bothers you less, or at least it no longer carries the same weight of negative emotions. The fight-or-flight response is no longer stuck in overdrive. That's a win, no matter what devices or medications may come along in the future.

Of course, it doesn't mean every day will be easy—not at all. But then again, that's true for everyone, not just us.

When we finally reach the point of feeling comfortable in our own skin again, life becomes lighter and more open to joy and happiness.
 
There's definitely a psychology to dealing with tinnitus. Perhaps more so where worsenings after long periods of stability are concerned.

My tinnitus was stable for circa 25 years until it went off like a crazy firework (including reactivity) after excessive headphone use about 7 years ago. So I completely understand your predicament, particularly that feeling of being so overwhelmed by the sheer unrelenting nature of this condition that it can seem impossible to ever find a way to accommodate it.

Being able to mask kind of gave me some sense of control over the situation; however, once the reactivity prevented me from masking, it felt like the condition had really backed me into a corner with nowhere left to go.

The way I eventually dealt with this scenario was to actively cease masking. The reason for this was really just practical - not masking was better than masking with all of the unwelcome cacophony that reactivity causes. In other words - i was able to find a way to a place that was better.

It didn't matter how slight or how much better; just having that small sense of a practical option helped add some perspective and calm down the fight-or-flight response, which is crucial. @MindOverMatter has been in the trenches with this stuff and has some good advice.
OK, I never try to mask it. The problem is that when I'm driving, when the window of the room I'm in is open and there's noise outside, when I turn on the air conditioning, or in many other situations where I'm not in complete silence, the reactive tinnitus kicks in.

It's horrible because it's so high-pitched and intense, and it's not constant—it comes and goes every few seconds. That doesn't feel like a solution to me, since I have to deal with noise throughout the day.
 
It was amazing how quickly I was able to shrug it off, even without any background noise
It's small moments like this that enable us to claw our way out of the dark with reactive tinnitus, which is a very difficult condition to manage.
It seems that the sooner you can convince yourself that this condition sucks, but isn't worth obsessing over, the better off you'll be
For me, it's been a very slow road this time round; probably about five or so years. I think everybody's path is different. If the me from today could advise the me from five years ago, I think I'd say to not put a time limit on it.
So your tinnitus became reactive, and you managed to calm down to a better place?
The first reactive event happened about three years ago, after the volume ramped up prior to that. A couple of years on, I've noticed the reactivity tends to come in waves, perhaps two or three a year, each lasting maybe four to six weeks. It varies, but they're kind of "spikes" in the classic sense.
When it's reactively spiking like that, masking only exacerbates the situation, so for me it's better to not mask at all when it's so reactive - 90% sh*t is better than 100% sh*t, which is what I've had to accept defines a better place. Frankly, what other choice do we have?
Has your reactivity changed at all?
See above.
 
It's small moments like this that enable us to claw our way out of the dark with reactive tinnitus, which is a very difficult condition to manage.
It happened again last night. I went to bed only when I was tired, and although the tinnitus was roaring, I didn't let it bother me.

This morning I woke up with it screaming in my left ear, and I'm in a total state of panic again. I'm supposed to be leaving for a week-long holiday overseas in a few days, and the anxiety of going ahead with the trip while my tinnitus is like this is definitely adding to my stress. I have no idea if I should go, knowing the tinnitus will keep bothering me during my holiday.
 
Hello @Paulie87,

About three months ago, I had several nights where I woke up to my tinnitus blaring at me. For some reason, I decided to check my blood pressure, and it was through the roof. I ended up going to the hospital because of it.

I realized that the high blood pressure was causing the spike in that moment, and my anxiety was what was driving the blood pressure up.

I ended up taking one dose of Ativan. I don't like doing that since it usually makes my tinnitus spike, and it did for one night, but by the next night it had cleared. I hear you on the benzo addiction. I had trouble coming off Ativan when I was younger. That being said, anxiety is something most of us deal with, and it may well be a major cause of these spikes.
 
I have no idea if I should go, knowing the tinnitus will keep bothering me during my holiday.
I often feel like that just before going away. A couple of years ago, on holiday, reactive tinnitus underlined the entire trip. But in retrospect, I figured it was better to have endured the spike in the sun with a beer rather than at home, where it was going to do its thing spiking anyway.

There's no hard and fast answer; it's really just a case of assessing through ongoing experience what works best for you.
 
Thanks, everyone. I ended up biting the bullet and cancelling the trip, even though I really didn't want to. I'm devastated, but my tinnitus is just too unpredictable right now, and the mental health facilities in Bali, where I was headed, are nowhere near the level of what we have in Australia. With things still so raw after my suicide attempt only a week ago, I figured I'm safer here.

I don't think there was a clear right answer, and I'm sure I'll be battling with my travel insurer over a good part of this. But anyone who has been to Southeast Asia knows that motorbikes are everywhere and noise is constant. I really didn't want to spend the whole trip second-guessing myself.
 

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