Reactive/Unmaskable Tinnitus — Positivity Needed

Discussion in 'Support' started by mrbrightside614, Feb 16, 2022.

    1. mrbrightside614

      mrbrightside614 Member Benefactor

      Location:
      NE Ohio, USA
      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Acoustic trauma
      I am back in the suicidal throes of tinnitus after having tinnitus for 2.5 years, with the last being a relatively good year (Nov 2021-Nov 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?
       
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    2. HeavyMantra
      Bugridden

      HeavyMantra Member Benefactor

      Tinnitus Since:
      Steadily worsening since 2018
      Cause of Tinnitus:
      Unknown
      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
       
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    3. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      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
       
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    4. UKBloke
      Caffeine

      UKBloke Member Benefactor

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      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.
       
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    5. kingsfan
      Mellow

      kingsfan Member Benefactor Hall of Fame

      Location:
      Southern California
      Tinnitus Since:
      9-17-20 / 10-20-20 / 3-31-21 / 5-23-21
      Cause of Tinnitus:
      turning everything up to 11
      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.
       
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    6. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Benefactor

      Location:
      NE Ohio, USA
      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Acoustic trauma
      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.
      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.
      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.
       
    7. OnceUponaTime
      Wishful

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      @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.
      :eek: Umm, I'd cut on some of these. You may have to go through some sleepless nights, but you will sleep again.
      :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. :sleep: :sleep: :sleep:

      Best wishes,
      Once
       
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    8. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      We just wish we could mask. I pray for this every single night!
       
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    9. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Benefactor

      Location:
      NE Ohio, USA
      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Acoustic trauma
      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.
       
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    10. OnceUponaTime
      Wishful

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      I did not know this, @mrbrightside614. :(

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

      Hope you get some sleep tonight.

      Once
       
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    11. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      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?
       
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    12. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Benefactor

      Location:
      NE Ohio, USA
      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Acoustic trauma
      How long did it take them? I can’t remember exactly what LDN is—low dose Narcan or Naltrexone?
       
    13. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Low Dose Naltrexone.
       
    14. Travis Henry
      Confused

      Travis Henry Member

      Location:
      Dallas,TX
      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      1 Moderna Vac, Noise and stress I guess, its killing me
      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.
       
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    15. Marshall

      Marshall Member

      Location:
      ND
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Not sure/virus/noise trauma/cumulative noise damage
      I was where you were at but only 28... Time seems the best healer, just make smart decisions, and trust yourself.
       
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    16. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      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.
       
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    17. Marshall

      Marshall Member

      Location:
      ND
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Not sure/virus/noise trauma/cumulative noise damage
      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.
       
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    18. Franci003

      Franci003 Member

      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Unknown
      Do you get fullness or pressure in ears, and some dullness with sounds and TTTS symptoms with the reactive tinnitus and hyperacusis?!
       
    19. TomBradyGOAT

      TomBradyGOAT Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Who knows
      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.
       
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    20. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      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.
       
    21. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      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.
       
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    22. Frayact

      Frayact Member

      Location:
      Greensboro, NC
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Unknown
      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.
       
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    23. emy289

      emy289 Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Not sure!
      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
       
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    24. Hottopic29

      Hottopic29 Member Benefactor

      Location:
      Niagara falls
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Zithromycin acoustic trauma 2022
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