Reactive Tinnitus Has Ruined My Life

Hello. I am a 33-year-old male who has had an incredibly strange, difficult, and extraordinary life trajectory. I grew up in poverty with two parents who both struggled with drug addiction. My father's heroin addiction would kill him when I was 10. My mother developed a painkiller addiction after a bus accident that she and I were in. We had won tickets to see the movie "Ferngully" in the early 90s. We took the public bus to the theater. A drunk woman ran head on into the side of the bus, and permanently disabled my mother.

My father spent most of his life in jail. He wasn't married to my mother.

At age 9, my mother married an abusive man who lived on a farm. He would block the driveway with his car so that we couldn't leave, and hit my mother and scream at me. My biological father died a year into this marriage, and my mother divorced that man a year later.

From that time, my mother spiraled into drug abuse and alcoholism. She would often come home to our half of a duplex house at night crawling on her hands and knees. I would help her to bed, at only 13 years old.

She would fall in love again, and I would do my best to leave at age 18 for college. I spent 18 and 19 pursuing a degree in anthropology. Unfortunately, in the US, you must use your parent's financial information to receive student aid until you are 25. My mother and new stepfather, whom I had little to no contact with, had no interest in giving that to me. After trying every pathway to remedy that, I was forced to drop out.

From 19-26 I would work in a grocery store, move to Philadelphia to work in an IKEA, move to London, Amsterdam, Osaka, and elsewhere, just trying to experience what I could. I was making myself.

At age 26, I went back to college. I pursued my real passion: philosophy. I graduated and left my undergrad with a girl who loved -loves- me very, very much. We both moved to Pittsburgh together to pursue our Master's degrees.

We were building a life together. We got a cat, and a roommate. I finally had hope.

I received therapy, and began a gym training regimen. I was raising myself up from my past.

And then, in March 0f 2021, the powers of this world decided that I had tasted enough happiness.

I got my first tinnitus tone as I sat on the couch eating a sandwich. For six months, I spiraled into a depressive, suicidal state. I emerged broken, and that hasn't changed. The person I was hoping to build died that day.

People, doctors especially, say that "tinnitus won't kill you". They're wrong. It killed me, and it has been killing iterations of myself ever since. A year after that first tone, I was gifted a second.

Two weeks ago I was given a third tone, and then a fourth, reactive tone the next week in the opposite ear.

Now, I am finished. I am about to check myself into a hospital out of fear that I will end my life.

Nothing has given me strength to fight this. I am empty now. I can no longer listen to my loved ones speak, or enjoy the days with them. There is only this noise.

Twice a night, consistently, with no exaggeration, I am awakened suddenly with those "flash-bang" like moments, and I fear that the tones will stay. I can not endure this any longer.

I have found no peace, and nothing masks the noises in my mind.

I don't even particularly love the movie Hellraiser, but the main villain reminds me very much of this condition.

"There is a secret song at the center of the world, and its sound is like razors through flesh.

Oh come, you can hear its faint echo right now."

 

I am sorry man. My heart breaks for you.

 

Do you have any idea what caused your tinnitus?

The usual suspect is loud noise exposure.

 

I am sorry. From the sound of your story, there is no question that you are a very strong person. May God bless you. Please continue to have hope for a better day.

 

I don’t know. It could be noise, it could be infection.

I just want to make sure it doesn’t get worse. It’s putting my entire life under a lot of duress.

Other people are holding hope for me, carefully and kindly. I am not strong enough right now. I am leaning on those who will support me.

 

Sorry to hear about your struggle. Reactive tinnitus can be a part of tinnitus and hyperacusis. I had both tinnitus and hyperacusis plus periods of reactive tinnitus in my tinnitus journey from over 10 years ago to now. In fact I had 2 episodes of hyperacusis. The first was due to acoustic trauma resulting in an ultra high pitched tinnitus, followed by severe hyperacusis when even my wife's soft voice hurt badly. The second was from 2 years ago when my left ears suddenly went deaf overnight, something called sudden sensorineural hearing loss or SSHL. Besides a new hyperacusis, the left ear can't hear anything but it can hear a loud rumbling jet-engine like tinnitus. So this time I have both tones, the old ultra high pitched tinnitus, plus the new jet-engine rumbling tinnitus, and the 2nd episode of hyperacusis. I have a tenor and a bass singing 7/24. What a bummer! So I understand the tough struggle you are going through with multi-toned tinnitus, and reactive tinnitus.

If there is any hope I can give you, I did recover from both episodes of hyperacusis without any more issue of reactive tinnitus. I also habituated to the multi-toned tinnitus, not due to my personal strength, but by following some helpful strategies which I explain in detail in my success story "From Darkness to Light...". If you can, please read it up to see if it can help you cope with the difficult time you are in now. Please take care. God bless.

From Darkness to Light, How I Recovered from Tinnitus & Hyperacusis

 

Thanks. The worst part of this is the strange reactivity in each ear, this awful high-pitched shrill noise that accompanies cars, planes, air conditioners, and fans. It's totally random, and for some noises it won't happen, and then it will happen for others. It's really hard to control my reaction to something so random, especially when it varies in intensity. Sometimes it so shrill it feels like a knife, other times its like a mosquito buzzing by.

I don't know if it's hyperacusis, as I don't perceive any sounds as being louder, really. It's just a 'tweeting' or 'chirping' over other noises.

 

I had reactive tinnitus for at least the first year I had developed catastrophic hyperacusis and tinnitus. Many things seemed to set things off, the sound of a CD-player's electronics, a refrigerator, electric cars, and so on.

The reactivity calmed down and eventually disappeared. I also have experienced reactivity after being exposed to a very loud alarm. That has taken almost a year to nearly disappear. I don't know how long you have been dealing with the reactivity but at least in my own case, it did greatly diminish.

 

I have exactly this variation of tinnitus @Pinhead, just as you describe, beeps and tones over certain sounds, feels like an electrical hiss down my ear. Prior to another acoustic trauma I’d suffered garden variety mono tonal tinnitus for almost 20 years.

I’m four months in with minimal to no improvement and must’ve read every thread and post on Tinnitus Talk quoting reactive tinnitus to gain an understanding of what the hell is going on. No one really seems to know and I’m undecided whether it’s related to hyperacusis or not. I just hold onto stories like @slc that it’ll eventually calm down.

Try to keep going, I know first hand just how disturbing this type of tinnitus can be, as a 40-year-old bloke I have no embarrassment admitting I’m utterly frightened by it and my anxiety has gone through the roof. Feel free to vent here.

 

What reactive tinnitus is part of or associated with or what you want to label or categorise it makes no difference.

It's simply tinnitus that varies directly with external sounds.

One of three things will definitely happen:

1) it will continue to worsen, likely because of further (loud) noise exposure.

2) it will not improve, likely because there is significant damage that is not healing and/or your brain is not doing well in adjusting/calming the reactivity. Also because you are over exposing to noise.

3) it improves, likely because you are a good healer and/or your brain manages to calm the reactivity to a more stable tinnitus. Avoiding moderate-to-loud noises would likely help put you in this category.

It will take a significant amount of time before you realise what category you are in.

 

It’s been nearly three years. It was only in one ear, but now I have this reactivity in both and it’s driving me insane. It reacts to different noises in each ear, making it impossible to adjust.

 

I actually agree with this. I've had the best days after avoiding music, any sort of sound therapy and just having as quiet a day as possible.

@Jupiterman, what do you consider a significant amount of time?

 

There are people whose reactivity has reduced after several months. There are people who have taken well over a year, some approaching two years before recovery is noticeable.

 

This will only give you temporary relief from your symptoms @Cmspgran, and will not address your underlying problem which is noise-induced tinnitus with hyperacusis. Ideally you should seek help in the way I have previously advised: Talking to your GP and ask for a referral to a hospital that treats these conditions. If you are given the brush off, then keep going to the GP surgery, daily if necessary as I once did, but remember to try and keep calm.

I also advised you to write to your local MP, once you have given your GP enough time to put things in motion. MPs regularly help their constituents regarding health matters - remember to tell your GP that you are going to do this. If you have not pursued the avenues that I have mentioned, then you are going to keep going around in circles and not getting anywhere.

You should try and avoid quiet rooms and surroundings, especially at night. Experiment using low sound enrichment. It doesn't have to be used continuously but it's something that you should keep trying to do, to help desensitize your auditory system.

Keeping away from sounds is not the answer. By taking things slow, a lot can be achieved.

Michael

 

Sound enrichment is definitely something you should avoid, just like most of @Michael Leigh's advice. I was worsening constantly and daily for 2 years, reaching over 25 tones before it shifted to improvement. Loads of time and silence. Complete and total silence. Sure, it might drive you insane at first, but that's the only thing that worked for me. You can read my story here:

My Entire Tinnitus and Hyperacusis Story — From Hell to Paradise

 

When I originally had reactive tinnitus (hearing all kinds of weird additional sounds set off by the fridge, CD player, etc.), I also had very high anxiety including panic attacks. I worked on soothing the nervous system through warm baths with Epsom salts, oiling the body with Vata oil (an Ayurvedic approach), taking walks every day, playing guitar and singing which weirdly did not set off the hyperacusis but rather became a meditation. I sometimes played for hours at a time.

The second time was using a power tool. I foolishly took my headphones off and realized I need to make one last cut. That caused by ear to vibrate with a new set of sounds when I spoke, her a voice, and a ton of other sounds. That took about 6 months to disappear.

The most recent acoustic trauma (a fire alarm) has taken about a year to almost entirely disappear. One difference is the anxiety is nowhere near what I experienced years back when I first developed tinnitus. I do have a somewhat different tinnitus sound in the left ear but things seem to be calming down.

When I first got tinnitus and hyperacusis, I did Acupuncture, Ayurvedic treatment, Klonopin and TRT. I added Hypnosis and Craniosacral therapy.

Now I take Ayurvedic herbs, get Acupuncture once every two weeks, see the Craniosacral therapist about twice a month (although not during the summer as there is too much traffic).

Best of luck. Finding a way to reduce the anxiety seemed to help me.

Stephan

 

The totally contradictory advice on this thread isn't helpful to people who are in serious distress.

For a new sufferer, this contrary advice simply cancels the other out, leaving the person no further forward, effectively not getting any advice.

People with reactive tinnitus (RT) tend to notice an increase in their tinnitus with 'sound enrichment'. This is no surprise as this type of tinnitus increases (even imitates) external noise in real time. If you have RT and are going to try sound enrichment, my advice would be to play the sound at a low enough volume that it does not set your RT off, that it does not increase (react) to it

That said, there are many who believe that silence will do your ears no harm and may even help.

RT is certainly a 'near' completely different ballgame to deal with. It's a condition that you absolutely do not want to antagonise or play around with. You really don't want it to get any worse!

I'm not sure there are any real benefits in seeing an audiologist or an ENT with RT? Chances are they won't have much (if any) experience of it and will simply recommend you expose your ears to normal sound or use sound generators. But as mentioned by many RT sufferers, these are the very things that make RT worse!

The "safe" choice is likely to try near silence first and be willing to wait a LONG TIME. If that doesn't work after a LONG TIME then sound enrichment may be something you are tempted to try. I doubt if you'll make anything much worse (if at all) by trying silence first.

What works for one person may well be poison for another. It's a dreadful condition.

You need to become your own expert.

 

Thanks for replying everyone. I’m trying to hold myself together but will probably need medical intervention. I can’t spend any time outside.

 

From having this for four months and experimenting with pretty much everything, I’d say this advice is pretty much spot on @Jupiterman and should be a reference point for all those with real time reactive tinnitus moving forward.

Trying to hold a job down, even from home and having complete silence, is near impossible. But what I’ll be trying to do for the next 6 months moving forward is avoid anything of a decibel or frequency that starts kicking it off and seeing where I am by summer of next year.

 

When you speak of each of these events, are you saying the reactivity came back, and then went away?

Also, it sounds like you correlate reactivity to stress/fight or flight/panic levels. Are you saying when you religiously did things to calm your nervous system down and the body as a whole over an extended period of time, the reactivity slowly lessened to the point where you just had normal tinnitus that did not change/react/worsen to sound?

Lastly, what are your thoughts on sound exposure? Did you wear hearing protection in or out of the home for any extended period of time when reactivity hit again, did you just avoid moderate to loud noises, or did you stay at home and try to be in silence as much as possible?

 

I will follow the same approach @Cmspgran. Complete silence is not possible with a job that involves online meetings and a body that requires fresh air and exercise. Without exercise and walks, my depression and anxiety would become unbearable. But I will avoid all other sound as much as I can. I am rooting for all of us!

 

Yes, after each of these events the reactivity came back and then went away.

I should explain how I'm using the term reactivity as I was unclear.

1) When I first developed catastrophic tinnitus and hyperacusis, noise from other sources (a refrigerator, voices, traffic) would provoke new tinnitus sounds while I was exposed to that particular noise. This type of reactivity went away.

2) In addition, the shower and also computer use of even 3 minutes (perhaps the sound of the fan or maybe visual stimulation from the screen) would increase the decibel level of the tinnitus, usually for the rest of the day. This type of reactivity has gotten much better but not never totally disappeared at least in terms of the shower -- which sometimes will increase tinnitus.

My nervous system was definitely in overdrive. I do believe that the reactivity (both weird secondary sounds from the fridge, air conditioner, and so forth) and increased decibel level (from showers and computer use) was related to my fight or flight panic mode. As anxiety decreased (I'll describe what I did along those lines), the hyperacusis decreased and my reactivity decreased. The tinnitus eventually also went from catastrophic to moderate but on some days, it's severe. (For example, I had friends over at my house last night, had one glass of wine and got to bed later than usual. Who knows if that was related).

In any case, to address anxiety, I did the following:

• I took walks every day often through a wooded area.
• I played guitar and sang for hours at a time
• I used an Ayurvedic oil (Vata oil) to massage my entire body plus Bhringaraj oil for the scalp and soles of the feet. (Note: if a person was overheating easily, very sensitive to sun and heat, then Pitta oil might be better.)
• I saw an excellent Acupuncturist twice a week for perhaps a year, he treated tinnitus: a short explanation was liver meridian fired up, kind of the notion of energy rising towards the head. He used Acupuncture points to mellow the liver overdrive, and kidney meridian, which is grounding, was often weak so he would strengthen that. I would experience a day or two of lesser hyperacusis and tinnitus after most visits. Note: I really lucked out with this Acupuncturist as I saw perhaps 8 others over the years who didn't seem to make any difference. (I still see this Acupuncturist 11 years later, but just once every two weeks in the summer as he only is available during that season.)
• I had sound machines set up around the house playing an ocean sound.
• I started Klonopin about 4 months in.
• I got white noise devices for my ears about 4 months in.
• I took an Ayurvedic formula prescribed by an Ayurvedic physician -- the formula was intended to address tinnitus but many of the herbs calmed anxiety. (I still confer with this practitioner who updates the formula a few times a year.)
• Craniosacral treatment once I was able to drive again. I think that was about 8 months into it all.

I don't mean to say the above steps are the only option. This is just what I developed as my own protocol, but I do think that tinnitus, hyperacusis, and reactive tinnitus were related to my amped up sympathetic nervous system. By calming things down, e.g., the panic attacks, I think I had a better shot at moderating the hyperacusis and tinnitus. The panic attacks had fully subsided before I even started Klonopin. And as a precaution, I still use earplugs in the shower 90% of the time as I find the shower will sometimes increase the tinnitus for the remainder of the day. So, I suppose, the reactivity is not entirely gone.

I tried a number of things in terms of sound exposure. Some of the Ayurvedic practitioners suggested I try days where I was silent. I don't think that helped much. I did not wear earplugs at home but I did close my storm windows and windows because even the sound of crickets or a neighbor's air conditioner sounded like a 747 taking off.

Also, I think whether to try silence and/or incorporate soft sound enrichment is a person by person dilemma. For me, at first, listening to a CD was only just a tad better than total silence. But somehow I found that if I played acoustic guitar, that was helpful. So, one might experiment with different sounds in terms of enrichment, keep the volume low at first, and I personally would avoid any sounds that cause the tinnitus to react for the worse.

I looked for sounds that were soothing. I found watering the garden was helpful as the sound of the running water did not set off the hyperacusis and watering the plants was calming. When I took walks, I either carried earplugs ONLY to use if I encountered loud sound such as construction noise. If I didn't have the earplugs, I would put my fingers in my ears and walk away from loud noise (power equipment, siren, and so forth).

I now only need protect my ears from particularly loud noises (I avoid streets where I can detect loud power tools, etc.). I use headphones when I vacuum or use a blender at home. I don't think I always need such protection at home, but I would rather not risk the exposure. When I fly in planes, I have had success using noise-cancelling headphones, often playing mellow music through them.

Good luck with it.

Stephan

 

I wish you the best.

 

This "reactivity" you guys describe, is it actually reactive tinnitus, or is it dysacusis? Or are both terms valid? Because I have these same sounds, hearing weird whistling, humming, beeping noises on top of sounds like fridges, air conditioners, fans etc. I've had it for almost 2 years and have always referred to it as dysacusis (aka distortion of sound), but I'm not sure if that's the correct term.

 

There is no such thing as reactive tinnitus @HearingHell. By this I mean there is no such recognised medical condition. This terminology was made up in tinnitus forums many years ago and has become commonly used. Tinnitus can react to sound or certain sounds. Most people that complain of reactive tinnitus, their tinnitus was originally caused by exposure to loud noise, which can make their auditory system oversensitive to sound or certain sounds, with or without pain.

This oversensitivity to sound, with or without pain is in fact hyperacusis. Hyperacusis can manifest itself in many ways and no two people will experience it the same. People that constantly say they have reactive tinnitus, hyperacusis, dysacusis, noxacusis are not helping themselves psychologically, because they are making their condition more complex than it already is. There is no doubt tinnitus and having oversensitivity to sound with or without pain can be debilitating, for I endured it for two years. However, the more complex one makes tinnitus and hyperacusis by attaching these words, more often than not, they will make their recovery more difficult. I have explained this in my thread: Keeping Things Simple with Tinnitus.

It is treatment a person needs if they are suffering from tinnitus and oversensitivity to sound, not to abstain from sound. Sound enrichment needs to be done slowly and carefully. In some cases a person may need to seek professional help, with an audiologist that specialises in tinnitus and hyperacusis management. This may require wearing ear sound generators, counselling and taking medication.

Michael

Keeping Things Simple with Tinnitus | Tinnitus Talk Support Forum

 

Thank you for this post. I've been experiencing ridiculous levels of reactivity, ear sensitivity and tinnitus volume this past few weeks. The symptoms can be very isolating because they're so unusual so it helps a lot reading posts that confirm they're not unique to me.

 

Dysacusis (or sound distortions) are external sounds being augmented in some way so as not to be heard how they should.

Reactivity is an increase in tinnitus that varies directly with external sounds (i.e. the louder the external sound, the louder the increase in the tinnitus). Reactivity can also mimic the external sound.

I guess there can be some overlap between the two?

Some, like @Michael Leigh, say that over analysing tinnitus and categorising it into its many 'facades' is not healthy; that a simple approach is preferable; that tinnitus is just tinnitus - period.

Perhaps there is some sense in that approach?

Whether you decide to stay in silence, expose to mild-to-moderate noise, use sound enrichment or not bother and live life as if you don't have have tinnitus; one does wonder how much effect any of this will have on your 'final' outcome?

I often wonder if my tinnitus has a 'mind of its own' and just carries on regardless?

As it was sound that caused my tinnitus, I prefer to err on the side of caution and embrace silence when I can. Time will be the judge and decider.

Well done to @AnthonyMcDonald; time and silence worked for him. Perhaps it will for me too?

Perhaps for you as well?

What is for sure is sharing information about attempts, successes and failures is the best we can all do on this forum to help one another to escape this curse.

 

Never post such harmful nonsense again. Do not gaslight the very people who are debilitated by this appalling affliction.

I have seen many of your posts and frankly I am disgusted with them.

In my view - just like you view without recognized science - reactive tinnitus isn't even a subset of hyperacusis. I have experienced this for 46 years now. Yes, 46 years of trial and error, all varieties and levels. I do not need to counsel people to understand the debilitated nature one endures throughout this.

The desire to restrict a life and the desire to remain safe. The desire to not subject our hearing and our mental health to more noise in an attempt to quash an ever worsening powerful beast.

Hyperacusis is a brain safety mechanism to prevent further damage, tinnitus is a malfunction. Tinnitus that increases due to noise is not a safety mechanism. It is not designed to protect you. I live and damn breathe this. Do not dare gaslight me and others that suffer with this with a know-it-all attitude. I expect you to block me, and I wholeheartedly encourage it, but I will have my say on the matter.

I will never change your mind as much as you will never change mine, but do not gaslight people who experience this day in and day out. Do not ridicule the very people whose lives are constrained who will never recover by simple over-the-ear generators. I will not stop people trying anything to rid of this condition but I equally will not gaslight them in the meantime.

I have now had the NHS, London Neurological Hospital, private ENT consultants, audiologists that specalisise in tinnitus and hyperacusis as well as the Brai3n cllinic all ask me whether I have 'reactive tinnitus'. If this is a terminology that is good enough for all of these official and recognised institutions, it is good enough for me, and for the people that exist on Tinnitus Talk.

Never say reactive tinnitus is not real, and without supporting scientific evidence state it 'does not exist'. Hyperacusis and reactive tinnitus, IMO are different symptoms.

Your posts are ridiculous, borderline dangerous and frankly out of touch from those who suffer.

I respected you in the early days as I saw you helped people in need, and for that I do applaud you and still do, but I also question the morality of someone who would prefer to live behind the secrecy of a self-proclaimed pseudonym whilst not confronting and engaging in the topic of this conversation.

I wish you good day.

 

I will continue to voice and express my opinion on tinnitus and hyperacusis as I see fit. Whilst you are entitled to you opinion, if you annoy or use any form of bad language towards me then you will be placed on ignore.

I wish you well,
Michael

 

This place would be much better without this appalling and soulless person you are @Michael Leigh.