Reactive/Unmaskable Tinnitus — Positivity Needed

[mrbrightside614]

I am back in the suicidal throes of tinnitus after having tinnitus for 2.5 years, with the last being a relatively good year (November 2021 - November 2022). My acoustic trauma-related tinnitus both decreased in volume and lost its intrusiveness over time. I'd say it went from a 5-6/10 to a 1.5-2/10. The biggest change happened when I began taking non-addictive sleep medication that allowed me to sleep for 8-12 hours uninterrupted. My hyperacusis still caused many flare-ups to my new tinnitus, but it predictably got better and more stable over time.

For what could be many different reasons, my tinnitus has grown to be 8/10 consistently over the past two months. Both of my existing tones in my left ear are louder, in addition to having what I suspect to be several different ultra-high frequency tones composing this sort of "electric wall" of sound that are possibly left-sided, but sound very central. When people describe "brain tinnitus," I assume this is what they mean.

These ultra-high frequencies are unmaskable. Over a period of 15-30 seconds, they will intrude over any sound. I thought headphones would be my key to success, as the bilateral acoustic stimulation allows you to perceive music "in your head," but the second night of doing this, the horrific high-pitched tinnitus spiked to be louder than the headphones.

Does anyone have any success in this (what I assume to be) reactive tinnitus? I've read some stories with the keywords unmaskable, and it seems there are a few. I am 2 months in since this horrible sound has reared its head, and even on my old dose of sleep medication, it is taking me 2 hours to get to sleep and I only get a shitty, broken feeling 5 hours of sleep. Please help me. God help us all.

Also, please no negativity, I simply cannot bear it. Truly, if I was able to mask this, I KNOW I could get through it. I wouldn't even have to mask it during the day to get through it. It is the fact that I cannot sleep on 225 mg Seroquel + 15 mg Mirtazapine + 3 mg Melatonin + 50 mg Diphenhydramine that is scaring the shit out of me.

Please, has anyone's reactive tinnitus gotten better?

 

[HeavyMantra]

Can I ask why you think your tinnitus increased?

My tinnitus has always been unmaskable simply because the frequency and "amplitude" is so high. My "solution" is to focus on other sounds (always podcasts at night), not try to mask the tinnitus.

I'll say this: my tinnitus has seen better and worse days. I can't count the amount of times I've been laying in my bed thinking "death is the only solution" and then, weeks pass and my tinnitus goes down, life seems possible again... I hope this happens to you too. 2 months isn't a long time when it comes to tinnitus, there IS hope that yout current level will go down

 

[Michael Leigh]

Please, has anyone's reactive tinnitus gotten better?

The usual reason for noise induced tinnitus to increase after it has been stable for quite some time such as yours, is further exposure to loud sound or listening to audio through headphones, earbuds or headsets even at low volumes. If it is not any of these things then stress could be a factor, or your hyperacusis hasn't successfully calmed down and needs to be treated. You could try self help or see an audiologist that specialises in tinnitus and hyperacusis management.

Your symptoms can improve so try not to worry too much. See your GP, ENT doctor and possibly get a referral to an audiologist. Click on the links below and read my posts that you might find helpful.

All the best,
Michael

Hyperacusis, As I See It | Tinnitus Talk Support Forum
Can I Habituate to Variable Tinnitus? | Tinnitus Talk Support Forum

 

[UKBloke]

Obvious question, but are you under the care of a proper audiologist that you trust?

For the past 8 months or so I've experienced these 'reactive' symptoms you describe. Sleep wise I'm OK without medication but overall the change in character of my tinnitus has been a real eye-opener (even for someone like me, who's battle-hardened to this condition with over 30 years experience of it).

Have you read Neil Bauman's book, Hypersensitive to Sound? He divides opinion here because of what I suppose people see as a lack of relevant audiological qualifications.

My own personal conclusion about 'reactive tinnitus' is that it is a symptomatic intersect between tinnitus and hyperacusis. There is a section in Bauman's book about reactive tinnitus where he cites an audiologist familiar with the condition. She discusses how she goes about treating it. Although they do acknowledge that patients like us are more difficult to treat than your bog-standard monotonal tinnitus patient, take heart that they do at least recognise our subtype. And their idea for treatment is to tackle the hyperacusis first.

Finding an audiologist that one can have this type of conversation with is the challenge I think. Especially in a busy clinic where their time is taken up dispensing hearing aids etc. You may already have access to an audiologist that is really familiar with this situation. If so I think it's worth pushing them a little further on it. If not, however, it can be some food for thought. Hope things improve for you.

 

[kingsfan]

This is a shot in the dark, but how does it react to running water - shower, sink faucet?

I've been having some really high-pitch, almost like a static/hiss/electric with a pure tone quality (it's so hard to nail down a description of it) since recovering from COVID-19. The only sound that seems to help is from an old Tinnitus Talk member and can be found on Spotify.

Are your headphones high quality? That could also be a factor.

 

[mrbrightside614]

Can I ask why you think your tinnitus increased?

My tinnitus has always been unmaskable simply because the frequency and "amplitude" is so high. My "solution" is to focus on other sounds (always podcasts at night), not try to mask the tinnitus.

I'll say this: my tinnitus has seen better and worse days. I can't count the amount of times I've been laying in my bed thinking "death is the only solution" and then, weeks pass and my tinnitus goes down, life seems possible again... I hope this happens to you too. 2 months isn't a long time when it comes to tinnitus, there IS hope that yout current level will go down

It could have been many things. I believe the precipitous event was Prolotherapy on my jaw. I'll post the unraveling timeline below:

11/3–prolotherapy

11/6–fleeting erratic tinnitus spikes in both ears

**no chronic worsening between these two dates but increased jaw tension and grinding**

11/25–started affecting sleep

11/27–started getting nervous about high tinnitus in morning

11/29–quit building for DnD

11/30–started antibiotics (Dicloxacillin)

12/1–normal gaming with Matt

12/4–felt sickish (99 degree temp for 1 hour)

12/5–still decent through day

12/7–higher tinnitus but day after Phenibut tinnitus was still better; end antibiotics

12/9–started Prednisone; became intrusive in gym (loud ambient), required benzos to sleep

12/12–possible trauma—microwave door slam ~20 feet away in other room, closed my ear with tragus (still decent at night sleeping)

12/13–was still improving through night?

12/14–started to notice new tone on walk while watching Twitch—highest pitch central

12/15–good sleep despite high tinnitus, end benzos

12/16–GI distress

12/17—severely intrusive; 6 hours sleep @ 125 mg Seroquel

12/19–strong residual inhibition, 6.5 hours sleep, tolerable but leads to 5 hours sleep ((3-4)); end of Prednisone

12/20—horrible 9/10 tinnitus; low tone reactive/distortions with shower and high reactive to everything; reinstate 300 mg Seroquel + needed Halcion, started getting panic attacks each time I woke up

Since then, I've had mostly bad days (6.5-7.5/10) where my tinnitus cannot be masked. I've started going back down on my sleep meds because Seroquel is terrible for you, but I'm paying the price with less consistent sleep. Occasionally I will have a "good" day—4.5-5.5, but allows residual inhibition to happen with frying sounds and the shower. Those days are so much more livable, but notably do NOT help sleep and for whatever reason usually are the days where I require Halcion to sleep.

This is a shot in the dark, but how does it react to running water - shower, sink faucet?

I've been having some really high-pitch, almost like a static/hiss/electric with a pure tone quality (it's so hard to nail down a description of it) since recovering from COVID-19. The only sound that seems to help is from an old Tinnitus Talk member and can be found on Spotify.

Are your headphones high quality? That could also be a factor.

So odd that you mention that. Running water completely masks it, but I haven't tried to fall asleep in the bathroom lol. I'm pretty sure once I attempted to sleep and there are no visual distractions from sound, it would pierce through after 15-30 seconds.

The usual reason for noise induced tinnitus to increase after it has been stable for quite some time such as yours, is further exposure to loud sound or listening to audio through headphones, earbuds or headsets even at low volumes. If it is not any of these things then stress could be a factor, or your hyperacusis hasn't successfully calmed down and needs to be treated. You could try self help or see an audiologist that specialises in tinnitus and hyperacusis management.

Your symptoms can improve so try not to worry too much. See your GP, ENT doctor and possibly get a referral to an audiologist. Click on the links below and read my posts that you might find helpful.

All the best,
Michael

My hyperacusis and tinnitus were at an all-time low before 11/25. I posted my timeline of worsening above. I still feel that my hyperacusis isn't worse, but my tinnitus is unbelievably worse and the reactivity is by far the worst component. I don't mean I hear loud sounds and the chronic tinnitus gets worse—I mean my tinnitus soars to be louder than present external stimuli after 15-30 seconds.

 

[OnceUponaTime]

@mrbrightside614, sorry to hear you are going through this again. If you think it was the Prolotherapy, it might calm down with time. Try to remain as calm as you can.

It is the fact that I cannot sleep on 225 mg Seroquel + 15 mg Mirtazapine + 3 mg Melatonin + 50 mg Diphenhydramine that is scaring the shit out of me.

Umm, I'd cut on some of these. You may have to go through some sleepless nights, but you will sleep again.

So odd that you mention that. Running water completely masks it, but I haven't tried to fall asleep in the bathroom lol.

Now you are giving me ideas!

In all seriousness, take hot baths with Epsom salts every night, chamomile tea and magnesium, try aromatherapy.

Anyone that can give you a nice body or foot massage??

I really hope it calms down for you again and you get some needed Zzzzz's.

Best wishes,
Once

 

[IntotheBlue03]

@mrbrightside614, sorry to hear you are going through this again. If you think it was the Prolotherapy, it might calm down with time. Try to remain as calm as you can.

Umm, I'd cut on some of these. You may have to go through some sleepless nights, but you will sleep again.

Now you are giving me ideas!

In all seriousness, take hot baths with Epsom salts every night, chamomile tea and magnesium, try aromatherapy.

Anyone that can give you a nice body or foot massage??

I really hope it calms down for you again and you get some needed Zzzzz's.

Best wishes,
Once

We just wish we could mask. I pray for this every single night!

 

[mrbrightside614]

Umm, I'd cut on some of these. You may have to go through some sleepless nights, but you will sleep again

Thanks, but don't you think I would if I could? The first time with my tinnitus, I landed in the hospital after 3 months of not sleeping. The lack of sleep almost led to my suicide. It's not an option to simply cut back.

 

[OnceUponaTime]

The first time with my tinnitus, I landed in the hospital after 3 months of not sleeping. The lack of sleep almost led to my suicide.

I did not know this, @mrbrightside614.

We certainly don't want that to happen to you again.

Hope you get some sleep tonight.

Once

 

[DebInAustralia]

Thanks, but don't you think I would if I could? The first time with my tinnitus, I landed in the hospital after 3 months of not sleeping. The lack of sleep almost led to my suicide. It's not an option to simply cut back.

Your distress is palpable. I am sorry. I'm there myself and completely empathise with your situation.

A close friend of mine has habituated in reaction, and starting to habituate in perception to loud reactive tinnitus.

It can be done!

What about adding in THC free CBD oil?

Wonder if you ever got around to trialing LDN? I recall you saying you have an autoimmune condition so accessing it shouldn't be an issue?

 

[mrbrightside614]

Wonder if you ever got around to trialing LDN? I recall you saying you have an autoimmune condition so accessing it shouldn't be an issue?

How long did it take them? I can't remember exactly what LDN is—low dose Narcan or Naltrexone?

 

[IntotheBlue03]

How long did it take them? I can't remember exactly what LDN is—low dose Narcan or Naltrexone?

Low Dose Naltrexone.

 

[Travis Henry]

I am in this boat and scared as shit as I live in a very noisy environment. Even with earplugs my tinnitus reacts to everything it seems. A/C, dog barking outside, loud cars driving by... My tinnitus was already loud, intrusive and hard to deal with and now I feel at a big loss. Ugh I just want to go live my life at 38.

 

[Marshall]

I am in this boat and scared as shit as I live in a very noisy environment. Even with earplugs my tinnitus reacts to everything it seems. A/C, dog barking outside, loud cars driving by... My tinnitus was already loud, intrusive and hard to deal with and now I feel at a big loss. Ugh I just want to go live my life at 38.

I was where you were at but only 28... Time seems the best healer, just make smart decisions, and trust yourself.

 

[IntotheBlue03]

I was where you were at but only 28... Time seems the best healer, just make smart decisions, and trust yourself.

Wish this was the case for TBI. I'm suffering severe visual symptoms where my eyes never stop moving and I can't focus on anything for more than a couple of seconds. I dealt with life destroying reactive tinnitus for 2 months and would take it back in an instant.

 

[Marshall]

Wish this was the case for TBI. I'm suffering severe visual symptoms where my eyes never stop moving and I can't focus on anything for more than a couple of seconds. I dealt with life destroying reactive tinnitus for 2 months and would take it back in an instant.

My dad always tells me things can be much worse. But it's hard to see that when you're struggling. I'm so sorry this is happening to you and I've read through a lot of you rposts, how you've never really had anxiety before any of this. But I'm glad you're really advocating for yourself and trying to fix the problem when most people give up. I wish the best and you're in my prayers.

 

[AnonymousPie]

How long did it take them? I can't remember exactly what LDN is—low dose Narcan or Naltrexone?

Do you get fullness or pressure in ears, and some dullness with sounds and TTTS symptoms with the reactive tinnitus and hyperacusis?!

 

[TomBradyGOAT]

Wish this was the case for TBI. I'm suffering severe visual symptoms where my eyes never stop moving and I can't focus on anything for more than a couple of seconds. I dealt with life destroying reactive tinnitus for 2 months and would take it back in an instant.

Maybe going onto someone's post that is having soul crushing reactive tinnitus and saying, boy do I wish I had that back, isn't going to provide much help. I know it got off-topic and you meant no offense, but we have to be here to support. What the OP is going through is devastating for him. Helping people feel like they are heard is what matters and helping them acknowledge and accept those feelings is what is needed.

OP, sorry I can't provide much help. I still don't know what reactive tinnitus is. Like I can hear mine over everything, except a shower. Does that mean reactive? I can hear it over tv and such.

Sleep first is most important. Anxiety will slow down from there.

 

[IntotheBlue03]

Maybe going onto someone's post that is having soul crushing reactive tinnitus and saying, boy do I wish I had that back, isn't going to provide much help. I know it got off-topic and you meant no offense, but we have to be here to support. What the OP is going through is devastating for him. Helping people feel like they are heard is what matters and helping them acknowledge and accept those feelings is what is needed.

OP, sorry I can't provide much help. I still don't know what reactive tinnitus is. Like I can hear mine over everything, except a shower. Does that mean reactive? I can hear it over tv and such.

Sleep first is most important. Anxiety will slow down from there.

I agree with you but you misread my post. I wasnt responding to the OP, I was responding to @Marshall.

I sympathize with the OP since I've been there.

 

[IntotheBlue03]

My dad always tells me things can be much worse. But it's hard to see that when you're struggling. I'm so sorry this is happening to you and I've read through a lot of you rposts, how you've never really had anxiety before any of this. But I'm glad you're really advocating for yourself and trying to fix the problem when most people give up. I wish the best and you're in my prayers.

Thank you kindly I greatly appreciate your compassion and kind words. I would make this longer but it's difficult for me to type nowadays. Thank you again.

 

[Frayact]

My high-pitched hissing is not reactive; it's consistent but ironically it doesn't bother me. I habituated to it 25 years ago.

On the other hand, the low-pitched hum I also have IS reactive. Even something as simple as talking on the phone will set it off. Listening to music and even brushing my teeth will make it louder. Like the OP mentioned, it's almost impossible to mask. And even if I'm able to do it, my brain will go "looking" for the noise. For example, if my refrigerator turning on is able to mask the hum a little bit, the volume of the hum will increase as soon as the fridge turns off. Same thing with putting my fingers in my ears. I call it the seashell effect. The sound created by my fingers will replace the humming, but as soon as I remove my fingers, the humming will be twice as loud.

There are simply no words to describe how horrible an existence this is to someone who has never dealt with it. The depression and lack of sleep is torture.

 

[emy289]

Looking at the timeline you provided there are quite a lot of things which could have potentially caused the tinnitus to change and start to become distressing and there's not one simple answer as to "take this" or "try doing this" to solve the situation unfortunately.

I don't know if this would be helpful at all but learning this really helped me manage my tinnitus when going to sleep: it's not the tinnitus that stops us going to sleep, it's the brain's reaction to the tinnitus which stops us going to sleep.

Meaning that even if the tinnitus is the loudest, most horrible noise in the world, it is possible to change our brain's reaction to it so that it doesn't affect us going to sleep. You say that when your tinnitus first started it was worse and it got better over time. This means that even though this episode of bad tinnitus seems the worst, it has the great potential to get better. As it's happened before.

I found CBT really really helped me as it's designed to not change the tinnitus, but change your brain's reaction to it. Meaning that it doesn't matter what's causing the tinnitus or what the tinnitus is like, because we have the resources to manage it no matter what.

I'm not saying this is the best option for you but it really helped me. You could either tackle the CBT from a "sleep" point of view, or a tinnitus point of view. Sleepio is online CBT for sleep, or you could ask your audiologist about CBT for tinnitus. I know there are a few online but I haven't personally tried those, I did in-person CBT.

Also stress, worry, tiredness (I know - tinnitus affects sleep, sleep affects tinnitus ) and general mental health can all cause tinnitus to get worse if not properly managed, so trying to manage all of these areas will also help with management of the tinnitus and just in general life as well.

If you're still struggling please speak to your doctor or audiologist for more support as there will be a way to improve and manage the tinnitus more easily - and keep us updated! Best of luck x

 

[Hottopic29]

@mrbrightside614, has it improved for you?

 

[BrysonKingMe]

Guaranteed this was caused by the benzo.

 

[EternalRinging]

Hello! So I've been suffering from reactive tinnitus almost 7 months.

In general, everything is worse now ever since my tinnitus started. It was only an unilateral high-pitched ringing on my left ear when now it's a bilateral ringing with multiple tones.

However, despite my worsening (mainly because of new tones), I've noticed a few things:

• At month 3, my reactivity was always constant. At its worst point, it reacted to voices and radios when I caught COVID-19.
• Now, sometimes I can turn on my bathroom extractor and the reactivity is barely there. Other times, the tinnitus ends up being louder than the bathroom extractor. Also, it used to compete with fans, ACs and heaters and now sometimes it does and other times it doesn't. Same thing applies with highways noises.
• Still, my reactivity dominates me since the intermittence doesn't seem to be one day on and other day off, but rather than that, some hours on and other hours off.
• Rather than a constant "eeeeee", now my reactivity sometimes manifests as a Morse Code beeping. However, this Morse code beeping can get on top of the radio when my regular reactivity doesn't.

Is there any hope for me, might it go away completely? I haven't heard many stories of reactive tinnitus going away so I'm afraid this is the greatest amount of improvement I can achieve with the reactive tinnitus.

 

[Joe Cuber]

Is there any hope for me, might it go away completely? I haven't heard many stories of reactive tinnitus going away so I'm afraid this is the greatest amount of improvement I can achieve with the reactive tinnitus.

I don't know if it will go away for you completely, but I can swap notes with you. I have intermittent unilateral non-reactive tinnitus and bilateral reactive tinnitus. The reactive component manifested about a month after my non-reactive component onset. Both components are daily intermittent--meaning they come and go by the day--and they tend to be inversely correlated, so on days I hear my non-reactive component, I don't tend to have reactivity and vice versa.

Anyway, I wanted to tell you that my reactive component peaked in strength around 2 months since my initial non-reactive onset. At its peak, it was extremely reactive. If I went to a neighborhood park, just about everything around me would set it off, the birds, people's voices, the cars driving by, and it sounded super loud, like a huge band of unskilled xylophonists trying to out-play one another.

However, my reactivity over time has been abating. It still comes and goes. It still spikes when I overexpose, but it's nowhere near the strength it once had. I can visit parks without issue, and can go to a restaurant and don't spike if it's not too busy there.

I'm 8 months since onset. So my hope is that your reactivity's strength will decline over time too. I'm thinking mine will probably never go away, but it does seem like it's on a trajectory where it won't be a total nuisance.

 

[EternalRinging]

I'm 8 months since onset. So my hope is that your reactivity's strength will decline over time too. I'm thinking mine will probably never go away, but it does seem like it's on a trajectory where it won't be a total nuisance.

Thanks for your response! I know there's a debate on this forum whether or not reactive tinnitus might be related to hyperacusis or not, but about two months ago I went to an audiologist and she told me that I have some degree of hyperacusis with certain frequencies (LDL as low as 60 dB in one instance, but mostly it was around 70-80 dB).

On the LDL test, I remember that when the audiologist tested my LDL for human voices, I didn't found any discomfort at all. By that time, my regular tinnitus wasn't reacting to people's voices. So in fact, that might mean that our reactive tinnitus might be related to hyperacusis even if we don't almost notice regular hyperacusis (ear pain or everything sound too loud). However, my reactive tinnitus reacts to sound way lower than my LDL's level so I'm not clear if hyperacusis might be connected or not.

But if it is, despite the fact that we might not be able to get rid of it completely, it might be highly likely that it can diminish in intensity in the same timeframe where hyperacusis is suppose to heal, if it heals (hopefully that's the case lol, I don't see myself living with the current amount of reactivity for the rest of my life).

Overexposure also sets back my reactivity for a while since it tends to get worser after being exposed to washer and dryer for example, but hopefully with time we can become more tolerant. At month 2 my regular tinnitus got spiked after an airplane flight and last flight about two weeks ago didn't caused a spike at all, my latest spikes have being very random with no pattern or warning at all.

 

[KoolKat]

As if regular tinnitus wasn't bad enough, WTF is the purpose of this reactive tinnitus crap. I had reactive tinnitus twice and it went away. I even had the thing where voices had a robotic echo. It's a tragedy there's no cure for this.

 

[Joe Cuber]

Thanks for your response!

Hey @EternalRinging - happy to respond!

However, my reactive tinnitus reacts to sound way lower than my LDL's level so I'm not clear if hyperacusis might be connected or not.

Same here. I did have a bit of hyperacusis for a few months--stuff like silverware clattering sounded a bit louder. I went to the beach once early on, and it sounded louder than I would expect. But, I agree, unlike the hyperacusis, my reactivity would get set off by certain noises even when those noises were quite quiet (still happens today). Like, my air purifier makes my reactivity whistle like a small bell being tolled nonstop. I've noticed that my reactivity won't spike when the noise is low, like the air purifier. But it will spike if I get an intense enough exposure for a long enough time--20 minutes at Costco with all the squeaky wheels will do me in.

At month 2 my regular tinnitus got spiked after an airplane flight and last flight about two weeks ago didn't caused a spike at all, my latest spikes have being very random with no pattern or warning at all.

Well that's positive that your latest flight didn't spike you at all. I've noticed my reactivity varies in, errr, willingness to react depending on the day. So, some days, I can go to a restaurant and I get next to nil reactivity. Other days, same situation and I spike in about 20 minutes.

It's a tragedy there's no cure for this.

Seriously @KoolKat, it's a demented condition. I had no idea how bad the experience could be until I experienced it myself. I recall a friend of mine telling me she had it a few years ago, and I remember not being able to relate with her at all. Now I can relate quite well.