A Year of Reactive Tinnitus and Severe Hyperacusis

In January of 2023, I developed reactive tinnitus and worsened hyperacusis. I tried to live normally even with the new struggles and setbacks here and there, and as months went by, it slowly worsened. It's become to the point that in November of 2023, I became housebound, and I started to wear earmuffs almost constantly. Then, in December of 2023, I thought that things were improving since I started to shower again without earplugs, until I got another setback, and things just worsened from there.

I've had moderate hyperacusis since I was little, and mild tinnitus since 2008 from noise exposure, which became moderate around 2011 and stayed that way until 2023.

I've developed many new reactive tones. They constantly change every day. Since January 2024, I have slept with earmuffs on, but I believe my snoring could be making things worse for me. I want to sleep without the earmuffs, but there is going to be noise from outdoors or a family member using the bathroom because my room is placed between two bathrooms. Someone uses the shower and toilet every day, which I can hear.

I always tell myself that it'll improve, it'll get better, it'll heal. I just don't know why it all started. I didn't go to any loud place. I quit using headphones in May of 2023. I made sure the volume was low enough that it wouldn't be harmful. In June 2023, I finally stopped taking Zoloft since my psychiatrist, and I thought it was the reason for it happening, even though I've taken it for over a decade. None of that helped. I took my 3rd Pfizer vaccine in February 2023, and I don't know if that worsened it. In May of 2023, I had a dentist appointment, and they had to drill my tooth because of a small cavity. The sound of the drill was painful. I remembered it spiked my tinnitus, but it went back down. I don't know if that caused more damage.

I developed OCD and anxiety in 2006.

I was planning on getting a driver's permit in 2023 and looking for a job, but that seems impossible now.

My family worries about me every day. Some days, I have a bad spike, and I have to talk to one of them for comfort. I can't believe tinnitus can become reactive and get this bad. I'm 27 and already thinking of wanting my life to be over. I've spent most of my life being careful and avoiding loud noises.

I just wish the reactivity would settle down, fluctuations would end, and my hyperacusis would recover. I constantly fear about my future. The one thing I remember was the doctors saying my brain stem wasn't positioned correctly, so I thought that was the reason my brain was fragile.

The only drug I take is Seroquel to help me sleep. I've taken it for about a decade, too, so I don't think it's the reason.

So please, I want to know what is there for me to do?

 

I have had reactive tinnitus that has worsened tremendously since January 2022 and then progressed to a homebound state in April 2022. It's been pure worsening hell. I would suggest time, quiet, ice baths, sun if you can, vitamin D if you can't, and staying away from anything loud, even with earplugs and earmuffs on.

Most of all, avoid taking medications. It is the best way for the auditory system to heal. Only take natural supplements to sleep.

Stay in as close to silent as you can. Work on TMJ and posture.

Best of luck. Tinnitus has no limit. Do not test it.

 

How on earth do you think that the volume of your snoring is causing inner ear damage? You will make it worse by depriving the auditory system of sound. Avoid loud, prolonged noises like bars, clubs, and pubs, as that can accumulate hearing damage.

Is everyday sound causing physical pain in your ears?

 

There is no pain to sound, as far as I am aware, except for high-pitched or loud sounds.

However, I have been getting occasional earaches, itchiness, and burn sensations. I would correlate it to wearing earmuffs too much, but I also worry it could be from sound. It's just that sounds make my tinnitus react. My snoring can be considered loud, and I fear with occlusion, it could be causing damage. I want to recover.

 

His snoring could be damaging his tinnitus, not necessarily his inner ear.

 

I really never thought about this. Is there anyway to prevent snoring causing damage?

 

That's what I'm wondering. I tried nasal strips, but they didn't work. I'm definitely snoring from the nostrils. It could be because of sinus allergies.

 

I am sorry to hear of the difficulties you are going through with tinnitus and hyperacusis, @HopeForAll96. Although some people believe that reactive tinnitus is a condition, I do not. This terminology was invented in tinnitus forums many years ago and has become commonplace.

I believe its frequent use, like the word noxacusis, serves only to make habituation more difficult, because of their impact on one's mental and emotional well-being. Instead of keeping things simple and calling it what the actual underlying problem is, which is hyperacusis caused by noise-induced tinnitus. It is all hyperacusis which comes in many forms and intensities, just like tinnitus, that no two people will experience the same.

I do not agree with the advice @Travis Henry has given you. If you follow it, your symptoms are likely to get even worse. Going into hibernation and removing yourself from all external sounds to give your ears and auditory system a rest will only increase your hypersensitivity to sound.

However, I agree with @Nick47's advice. Prolonged use of earmuffs wasn't a good idea, although I understand your reasons for doing it. Please click on the link below and read my thread: Hyperacusis, As I See It. You could try playing sound enrichment at a very low-level using a sound machine.

Because your symptoms have continued for such a long time coupled with the fact that you have OCD, I believe you need to seek professional help. Please try and see an audiologist that specialises in tinnitus and hyperacusis management. Have a talk with your PCP/GP and explain how you feel. You may also need to see a counsellor to help you with your OCD and also take medication to help cope with it.

The current treatments for noise-induced tinnitus with or without hyperacusis, whether with pain or not, are: Sound therapy which may include hearing aids, white noise generators, counselling and medication. To sit and do nothing and give your ears long term rest is not the way to improve your symptoms. You need treatment, so please talk to your doctor.

Take care,
Michael

Hyperacusis, As I See It | Tinnitus Talk Support Forum

 

Reactivity, a different guise of hyperacusis or whatever you want to call it, is a difficult condition to manage on top of your tinnitus. It complicates the suffering.

As for the advice you've been offered; this is fairly typical on Tinnitus Talk, @HopeForAll96, getting totally conflicting advice along with a strong opinion to go with both sides (of the argument).

The truth is no one knows for sure. There are people who expose and get better and those who expose and get worse. It almost seems like there is a random element to it. What is for sure is you will be the first to know and learn as you continue your tinnitus journey.

In a year or two, you will no doubt have strong opinions based on your experience that you want to pass onto others. And of course, the advice you give will be the complete opposite of what another sufferer(s) will advise.

 

I don't know what to do. It's been getting worse and it's been horrible the past few days. I've been doing my best to be in silence even though there are going to be noises in the home and from outside. It's almost as if my brain is dysfunctional. It reacts to every sound, including body movement. I can't even fucking smile without it reacting in a way.

I tried Clomipramine back in November because of Tinnitus Talk experiences, and the first couple days of taking it made my tinnitus in my right ear super loud. I immediately quit taking it, and it settled down the day after. Then, in January, I tried Mirtazapine for four days and noticed my electrical tinnitus got worse, so I stopped taking that.

 

If your tinnitus reacts to body movement, including smiling, that's a somatic element. Your brain is greatly amplifying your 'body sounds.'

Your tinnitus brain certainly seems to react adversely to medication.

When you eat or chew, does your tinnitus spike?

When you talk, does your tinnitus spike?

How is your hearing?

You certainly appear to be on a more difficult journey than the average Tinnitus Talk member.

Reactivity is a rarer form of tinnitus. I think only about five or six Tinnitus Talk regulars suffer from it.

Reactivity, in my opinion, is tinnitus that has very low tolerance. The reactivity is like mini-spikes. Hear a normal sound and your tinnitus spikes in direct reaction to it; the spike usually being temporary in unison with the external sound.

'Reactivity' is certainly a good word to describe it.

With 'normal' tinnitus sufferers, their tolerance is much higher to sound, and it takes a lot more for their tinnitus to spike (or react), so their tinnitus' tends to be more stable.

You have been a tinnitus sufferer since 2008, so you have already been around the block a few times. You had 'normal' tinnitus for many years before it recently became reactive. This could be viewed as proof that the condition is real. What you report with reactivity certainly chimes with others.

The good news is many have reported their reactivity/sensitivity reduces over time.

 

When I chew or brush my teeth, I get uncomfortable and feel one of my tones react to it.

Also, talking causes it to react with a horrible high-pitched hiss and zaps. I had a hearing test back in April of 2023, and it said I have a sloping Sensorineural Hearing Loss starting at 1,500 Hz. Nowadays, the high-pitched drill and zaps are more frequent.

 

That sounds like a bad case of reactivity if your own voice spikes it. The zaps sound terrible.

I'd recommend you try a toothbrush with nano brushes; they make a lot less noise while brushing.

Also, try to avoid chewy and crunchy foods for now. Cut up your food more to reduce the need for chewing, and eat softer foods like porridge, soft fruits, or potatoes.

Avoid biscuits, nuts, and crisps (potato chips).

 

I'm afraid of my future. I don't want to end up like @Travis Henry.

 

You say you believe your snoring may be causing your tinnitus to increase during sleep. Have you considered different sleeping positions? On the front, back, left side, etc. You can easily set your phone to record sound during the night to find out which works best.

@Travis Henry is certainly in the top spots for the worst case on Tinnitus Talk just now. He has given you some snippets of advice.

Ultimately, your ears belong to you, and you need to live with the consequences of the advice you take or do not take.

 

Great points that you stated very clearly here and should be posted on the front page. It's a vital message all of us need to be told from the start. Thanks for saying it so well.

I've read @Travis Henry's posts and I think he's full of shit. Talks down on anyone here who's in of need help from medication or isn't 'severe' enough to him. I don't see a catastrophic case or even a decent man, behaving like that.

I call bullshit on @Travis Henry.

 

I've tried different positions and they don't help it.

 

I think @Jupiterman has again made a good post on the contradictory advice given here about reactive tinnitus; it doesn’t help newcomers at all.

I’d consider myself one of the small number of unlucky regulars that suffer from this horrible version along with distortions; as a tonal stable tinnitus sufferer for two decades, I can attest to how much worse it is!

I’m approaching the year mark @HopeForAll96, and I’ve gone with the approach of allowing regular sounds in, such as nature and listening to music at low volume etc, as I am just not convinced sitting in Peltors for a year is the answer, it’s not practical either when you have to carry on working. What @Nick47 says is good advice, stay away from obviously dangerous environments like nightclubs.

My condition has morphed so much in a year and continues to do so; it is so variable and unpredictable. I’ve tried various medications, including Mirtazapine, Carbamazepine, Gabapentin, and Clonazepam. All but Clonazepam have done nothing or temporarily made it worse. I’ve tried the usual range of supplements too, to no good positive effect.

I suffer from the electrical zaps down the ear as well and can confirm they are awful.

It would seem there is only one option, and unfortunately, that is time—and potentially lots of it. I'm not sure how old you are, but I’m now 41 and at the peak of my working age, so work has been a nightmare—this is even working from home.

As @Jupiterman has stated, from previous posters' experience, it seems only time can have a positive effect. I am still hopeful that I can make improvements over another year of sensible, sound exposure. Please keep us updated on your progress, and I wish you the best.

 

Anyone who tells you to keep exposed to sounds to get better didn't have reactive tinnitus. You don't want to keep inflammation going. The best way to do that is to pay attention to what doesn't make tinnitus react and stay at that level. I guess everyone can call me mental when I'm dead and gone solely because I followed doctors' & TRT sound & med pushers' advice & tinnitus shot up to the moon. Ultimate tinnitus can push a sane man to lash out like I am at what worsened him and took away all his coping tools. So, do everything to keep tinnitus under control. The things you describe are exactly what I am going through, and so many went from a liveable situation to homebound. Damage control is pretty much all you got.

Build a soundproof room. Limit talking if it spikes you and any noise that spikes. Being in quiet has made no one worse. If they got worse at being quiet, it was mental.

 

Dude, will you just stop with the gaslighting? I have many people message me, furious with what you are always saying. Saying you know best, Pawel Jastreboff knows best, saying noxacusis is not a condition, reactive tinnitus is not real.

Nobody asked you.

Sound therapy is so outdated it’s not even funny. It just drives me nuts when you TRT and sound therapy pushers gaslight and say our condition is not real and it’s made up.

That’s where I draw the line. You can say what worked for you and what you tried, but when you act like you are a researcher or top-tier doctor, you need just to stop. I have every single condition that ever existed, from hearing damage to every form, every symptom. And I can tell you reactive tinnitus is a thing and more sound usually isn’t the answer. The same thing happened with noxacusis compared to loudness hyperacusis; it is not the same thing. There is a big difference between what you had and what I have. I remember you telling me you had “severe” pain hyperacusis so bad you had to tell people to lower their voices! Not severe. I have a system to be able to tell if somebody has noxacusis or not, and it’s pretty consistent. I’ve talked to thousands of people; most people who have loudness hyperacusis do better around low-level noise and not pushing it, and most noxacusis people do better with silence.

People like you say noxacusis people are idiots and are just lying. Why do some people get better with noise and some with silence? Because they have two totally different conditions. So Charles Liberman, Arnaud Norena, Megan Beers Wood, Hyperacusis Research, are all idiots when they say noxacusis is very real? You are not a researcher; you are not a doctor, and neither is Pawel Jastreboff. Stop acting like one. You are not helping anyone at all. All you do is confuse and gaslight people. Pawel Jastreboff and sound therapy are all garbage. Do you know why? Because there are no real trials and no placebo group. How can anyone take anything seriously with no placebo group?

It’s done, Michael. Everybody knows your advice is flawed. Anyone pushing a system so badly is getting a benefit out of it. You are obsessed with TRT and sound therapy, and you obviously make money off it or benefit in some way. Even if I were cured tomorrow from something, I wouldn’t be pushing it as much as you are. It makes you really think about what’s going on. Maybe you really like to try and help people, maybe you think you are making a difference. Well, your advice actually ruined me and brought me from moderate to catastrophic. Many others, too. It is way more dangerous being around noise than it is in silence. The only time in 3 years I’ve gotten any pain relief is in silence. Do I have to remind you how bad I have it? Only a handful of people in history who have had it this bad. You can say whatever worked for you, that’s your right, but saying these other conditions aren’t real is crap; you are not qualified to talk like that.

 

This is spot on and should probably be the gold standard of general advice for tinnitus and hyperacusis. Well said, @Cmspgran.

 

Simple all-in-one test to determine your level of tinnitus:

1. Does the symptoms described by @Travis Henry sound totally outrageous and exaggerated to you? If yes, then you are very lucky and are a mild-to-moderate sufferer.

2. Can you relate to the symptoms described by @Travis Henry? If yes, then you are unlucky and a severe-to-catastrophic sufferer.

 

With respect @Jupiterman, no one can determine the level of a person's tinnitus or hyperacusis. The reason is that it all depends on how these conditions affect a person's mental and emotional well-being. I assure you that one doesn't have to rant and rave and be abusive to all and sundry like the person you are referring.

Over the years, I have counseled many people with tinnitus and hyperacusis. Some, by their own admission, have said their tinnitus or hyperacusis is mild, yet they are in immense distress because of these conditions. This is the importance of counseling with an audiologist trained in tinnitus and hyperacusis management, which some people think is insignificant and a waste of time.

Good-quality counseling helps to remove and demystify the negative thinking often associated with tinnitus and hyperacusis. Over time, this helps habituation to occur, coupled with treatments like medication and sound therapy.

Michael

 

@Travis Henry was right when he said tinnitus has no limits. My high-frequency variable tinnitus has gotten worse in recent weeks; I suspect it is due to occasional Benzo use after the medication leaves the system. I have more bad days and fewer bad days. Time has not given me any benefit over the last 2+ years of severe tinnitus. Hyperacusis and TTTS started in 2023 and don't seem to have improved, either.

One odd thing with reactive tinnitus is that I don't seem to have that with my high-frequency or mid-frequency tinnitus, in which I have loudness hyperacusis with those frequencies. And the high-frequency tinnitus is what gives me the most anxiety. However, I do have reactive tinnitus with my low-frequency left ear tinnitus. I had suspected that driving and wind could be making it react in the past, but it's been more obviously reactive lately when running the restroom vent fan a short time, then after turning off the vent and returning to where I was sitting in a silent room, then suddenly noticing my low-frequency tinnitus is humming louder. It's happened quite a few times. It slowly returns to baseline after that short noise exposure.

 

This isn't exactly true.

 

I assure you it is.

Please go to my started threads, and read: Tinnitus and the Negative Mindset, Acquiring a Positive Mindset, The Complexities of Tinnitus and Hyperacusis. Then you will begin to understand the effects tinnitus and hyperacusis can have on a person's mental and emotional well-being.

Of course, if you are like some people here, who think the louder one shouts and complains is an indication that their tinnitus and hyperacusis are more severe than anyone else's, then that is all you are going to believe.

Michael

 

What a load of garbage. The minimum masking level can be used to estimate the non-reactive tinnitus level. According to you, reactive tinnitus does not exist, so there's no problem there, right?

Hyperacusis level can be established with LDL (loudness discomfort level).

 

I sympathize with you, as this is where I've been as well for the past eight years. My reactive tinnitus and hyperacusis dictate my life. My high-frequency, multi-tonal, discordant tinnitus is a nightmare that is only getting worse the older I get.

I've accepted that this is my tinnitus and am trying to control my reaction to it. I live day by day and grind through.

 

It's just getting really variable and reactive. I can't believe the snoring I'm doing is causing the damage. I'm protecting as much as I can. I'm so afraid that there's no recovering from this. I'm 27 years old, and my life is at its end already. I don't want it to end so soon. I miss doing all the things I once did.

 

Hi @Jammer.

Your tinnitus and oversensitivity to sound are quite acute and I do understand how you feel. If it's possible, I would like to try to give you some advice that might be able to ease some of the suffering that you are going through. I realize that you're a veteran of tinnitus and hyperacusis, so my suggestions may not be of many benefits, but if you're able to, could you please tell me when you were last seen by an ENT doctor and audiologist that specializes in tinnitus and hyperacusis management? Do you have any hearing loss? If so, do you wear hearing aids? Do you take any medication to help with tinnitus management or use any form of sound therapy?

Hope to hear from you soon.

All the best,
Michael