Reactive Tinnitus Has Ruined My Life

I don't care what opinion you post. And if you want to ignore, please feel free. I really don't mind.

I do carry a grudge when medical quotation is used for new members which can prove harmful. You state as in medical fact when it is, by your own very words, 'your opinion'.

There is no medical evidence that reactive tinnitus is a subset of hyperacusis, and no medical evidence that TRT is a solution. My personal experience suggests otherwise, but I will freely admit that, it is just an opinion.

Post your opinion, state it as such, and carry a disclaimer like every well meaning person on Tinnitus Talk does, but stating medical fact and certainty for an uncertain condition to those in desperation is borderline dangerous for newbies.

I am not planning on engaging on this any more. I just want new people to hear both sides and form their own opinion.

 

Not sure if anyone else is like me, but when I read things like “try to avoid external sounds that make the tinnitus react or spike”, I literally shake my head because ALL sounds do that to my tinnitus. And no, it doesn’t matter how low volume the sound is. I have said it before in posts, if my ears can hear it, they usually have something to say about it. Just moving my head on my pillow changes my tinnitus. Getting out of bed, walking to the door, opening and closing it quietly to let my dog out, then going and lying back down ramps up my tinnitus. Constant sounds remain the worst like wind in the trees, shower, TV, fans, driving, etc. My reactivity or whatever you want to call it is more of the immediately spiking kind and all my existing tinnitus sounds take part. The beeping sounds literally pick up in pace, the other sounds become more chaotic, and my 15,000 Hz becomes so intrusive and electric that it’s like I have a power source rushing through my ears. It almost amazes me that I do not have loudness hyperacusis or any pain with how chronic and awful my reactivity is. The only thing I may get sometimes is a fullness feeling mainly in my right inner ear (damaged ear) if over stimulated.

I guess my point is if I had to avoid all sounds that spike my tinnitus or make it react, that would lead me to living in silence. I cannot do complete silence 24/7 because my 4 chaotic sounds along with my constant 15,000 Hz electric tone make me want to ruin my residual hearing in my right ear and get a cochlear implant. I’m aware the irrational thinking of that, but desperation makes you think about a lot of irrational things that could possibly give you relief.

Still heartbroken over my Keppra trial. The reactivity is what keeps me debilitated and ruined, just like you said @Pinhead. By the way, I too live in Pittsburgh, just thought you should know you’re not alone in this city suffering like this.

 

I have had tinnitus for 27 years. I visit Tinnitus Talk to help people that are having difficulty coping with tinnitus. My main focus is noise-induced tinnitus with or without hyperacusis. I will continue to do so and will not curtail my posts to suit the likes of you. If you don't like what I write, that is your choice, for I realize I can't please everyone. The positive feedback that I get from people that have asked for my help, spurs me on to continue with what I'm doing.

Please feel free to place me on ignore since you don't like what I write, I have done this with quite a few members that have become a nuisance to me. I will not be responding to your posts again.

Goodbye and I wish you well,
Michael

 

Thanks for your post. The way you defined the terminology is helpful in order to distinguish what I have experienced, e.g.,

1) dysacusis (sound distortions) that have gone on for up to 12 months from acoustic trauma (a power tool and years later from a fire alarm)

and

2) reactivity (where certain sounds such as the shower, noise from a car, sirens) increased the level of tinnitus, at least for the remainder of the day.

 

Seriously people... I see both of your points here but is this really the thread to get into a pissing match about this? @Pinhead is obviously suffering immensely like a lot of us and is looking for help... this banter is not helpful.

 

I was thinking there could be some overlap as well. But in general, they do seem quite different.

My condition definitely falls under dysacusis. External sounds are distorted, off pitch, out of tune, inaccurate and often have additional noises on top of them. However, I perceive these abnormal sounds as coming from the source of the sound, not inside my ear.

From what I've read here, it seems reactive tinnitus is usually perceived to be inside the ear, and is basically a stubborn form of tinnitus that refuses to be masked. If you play a sound to cover it up, the tinnitus will just increase in volume to still be louder than the external sound. Some people say their tinnitus will lower back to baseline immediately after the external sound stops, but for others, the tinnitus will remain spiked for the rest of the day. But I guess this reactivity to external sounds can also create more sounds inside your ear on top of already existing tinnitus?

The main reason I asked my initial question was because I was wondering if perhaps, maybe someone here had dysacusis, but had never heard of that term, so they referred to their symptoms as reactive tinnitus instead, as it's a much more common and well known term.

And when people mention things like hearing additional beeps and tones on top of specific sounds like fridges and fans, this is what makes me wonder which symptom they're actually experiencing.

However, it does appear that most people here do have reactive tinnitus, and not dysacusis. Although I see that @slc has experienced both dysacusis and reactive tinnitus and might have had trouble distinguishing between the two symptoms before. So I'm glad that at least 1 person here has learned something new about their condition.

 

When I first came here a year ago, I also thought it was reactive tinnitus because that seemed to check most of the boxes. But I found out what I had was dysacusis, just like you. They have a lot of similarities so it's easy for people new to this whole thing to be confused.

When music reaches a certain high pitch, there's a beep, or a different sound if the pitch is extended and goes on longer than one second, showers and toilet flushing also produce weird sounds. When this first started happening it sounded very metallic but it's changed a lot over the year.

I'm hoping it'll go away eventually, that the good hair cells will try to stop making up for the damaged one, or my brain gives up on it. Or maybe I'll have it for as long as I'm still around. Either way, dysacusis is a dumb condition and if I knew this kind of thing existed I wouldn't have messed around with sound pitch changers as much as I did

 

Basically this. It’s pretty easy to distinguish between the reactive tinnitus and dysacusis. Especially when you’ve experienced both, it becomes quite clear IMO. I’m one of them. Reactive tinnitus primarily concerns the tinnitus itself. Specific sounds in your surroundings can cause your tinnitus to become louder or/and introduce new tones/noise into the mix.

Dysacusis, or distortions changes the perception of natural sounds. Basically, external sounds are not perceived in the usual way that most people, if not all, typically experience them.

Example: During the time when I was experiencing serious distortions, the sound of a shower or running water resembled the sizzling of bacon in a frying pan. Wind sounded like the rattle of a rattlesnake's tail, and rustling leaves felt like a machine gun firing bullets. Human voices had a robotic quality and listening to music was particularly the most unsettling — music was difficult to comprehend and came across as intelligible to me, akin to hearing it through a blown-out speaker with microphone feedback. In essence, the sounds in my environment were far from their normal perception. It’s gone for the most part, thankfully. I like to credit sound therapy for helping ‘retune’ things for me.

 

Exactly. They are very different, and like @ZFire, I've also had both and his description is very accurate.

Reactivity is a distinct increase in pitch or volume in tinnitus, whereas dysacusis is a distortion of the sound you hear, as if through a robot modulator of sorts.

 

Well done!

Could you give more details of this with timelines?

 

I'm sorry Keppra did not work for you.

But you also tried Trileptal and it helped? Did you stop taking it?

 

I thought Trileptal helped after taking it for 6-7 days and got 3 of my best days, then it went back to baseline.

I tried increasing the dose, no difference. The side effects were not worth it if it wasn’t going to make a difference again.

 

It was definitely confusing in the beginning. I had no idea what I was experiencing in the beginning so I just thought, "maybe it's reactive tinnitus, maybe it's hyperacusis, maybe it's recruitment." But none of those sounded quite right. Even googling stuff like "Why do I hear whistling noises over fans" or "hearing distortion ears" would either bring up nothing, or just hyperacusis. But after two weeks of fumbling around, I finally encountered a post with the same symptoms as me, and with someone in the replies who actually knew what the condition was called, dysacusis.

I've experienced pretty much all those same distortions as well. Music sounds messed up in specific parts, and some songs sound better than others. Faucets, showers and toilets used to whistle, although sinks and showers did improve and sound mostly normal now, while toilets still sound a bit off. Some old distortions from the beginning faded, some changed, some remained the same, and some new ones have come along later down the road.

I hope so too. This is the only ailment I've ever had that's had a significant impact on my life.

Yeah, good description of both conditions and their differences.

I experienced many of those distortions too. The robotic voices weren't there in the beginning, but they popped up three months after onset, and they were the most horrifying symptom. Thankfully the voices improved, and while not 100% perfect, they sound mostly normal now. Music was also messy for me, and still is today, although I noticed a little bit of improvement recently. I'd describe it about the same as you, parts of songs are hard to comprehend and they sound like blown-out speaker with mic feedback. I still get that unfortunately. Interestingly though, my distortions have never really affected wind. Leaves were kind of distorted at one point for a week or two, but just barely.

The strangest part is that there were times where my condition would literally get better... and worse at the same time. Whistling from water would fade, but then the robotic voices would appear at around the same time.

I'm also interested to hear further details and timeline.

 

June 2021 - Distortions started soon after the start of my severe tinnitus. Loudness hyperacusis also emerged.

Throughout July and August 2021, I had to use hearing protection almost constantly (nearly 24/7) due to severe problems caused by loudness hyperacusis. Despite this, distortions were still very much noticeable.

Between September and December 2021, my dysacusis symptoms began to subside and things started to sound normal little by little. Interestingly, this coincided with my decision to start sound therapy during this period.

From January 2022 to December 2022: Occasionally, for reasons I can't explain, these distortions would still resurface, although they were not as intense and widespread (distortions only from running water) as before. They typically would last for a few days to a week. Over time, these occurrences have become increasingly rare, and it's been a long while since I last experienced any kind of distortions. I have hardly experienced distortions/dysacusis so far in 2023. Some good progress I like to think.

I think time is the best healer for distortions, but I also found that listening to classical music at low volumes was beneficial and contributed to making things sound more natural over time. I think by constantly listening to the melodic tunes of soft piano music, it assisted my brain in recalibrating my perception of sounds to their more typical state. It's kinda hard to put into words, but initially, I can say that the more I listened, the more I noticed an improvement in how the music sounded compared to a month ago. It's as if things just began to sound way better and more ‘normal’ over time.

 

Thanks @ZFire.

You are endorsing the listening of sound in order to retrain the brain to hear properly again. That is interesting.

It's atune to people with brain damage after a stroke having to relearn how to walk and talk again.

 

I'm still not sure how to describe what I'm hearing. As I lie here in my bed with my small space heater on, the broadband sound it is making is accompanied by an ultra-high pitched screech in my right ear. This happens with most soft, broadband sounds like fans or air conditioners or cars passing by in the distance. I'm not sure if it's dysacusis, diplacusis, or hyperacusis. Whatever it is, it makes most public spaces unbearable. It's not that the sounds are 'louder' in any way, just that they produce this one screech.

It was only in my right ear up until two weeks ago when it began to happen in my left as well, which is why I started this account and sought out serious medical intervention to prevent me from harming myself.

 

Actually, he is endorsing music rather sound therapy. I agree that music is better than just sound because music is able to reach your emotions. Once one is able to listen and enjoy music with relentless tinnitus, habituation is in reach.

 

The problem with music is it's artificial sound (from a loudspeaker) and some sufferers are sensitive to this.

 

Yeah exactly, that's the core idea behind using some kind of sound therapy, particularly music to address hearing distortions/dysacusis specifically. The theory centers around the idea that distortions happen when the brain attempts to make sense of changes in the patterns of sound activity in the inner ear. In this process, it’s comparing incoming sounds to familiar patterns that your brain has learned (based on memories) from a lifetime of hearing experience. And so by using music (at low level volume), you exercise and retrain your brain, helping it readjust and to perceive sounds more naturally again.

During my bouts with hearing distortions/dysacusis, I was following a musician named Craig Hallen, who had also dealt with dysacusis (he has since recovered) caused by microsuction. He shared his experiences and the treatment options he pursued. He reached out to a university audiology professor who recommended using low-level music for the same reasons I mentioned above. I followed that advice as well. If anyone is interested, I made a thread about this musician, providing details about his dysacusis journey and the treatments he pursued.

Just to clarify, I'm endorsing the use of music for tackling dysacusis specifically. I agree with @DeanD and others when they say that hyperacusis, reactive tinnitus, and dysacusis are all distinct symptoms. While there could be relationships between them, they each manifest differently, and that means they may require different approaches to treating it.

Regarding reactive tinnitus and hyperacusis, it's a case-by-case situation. All individual. The effectiveness of sound therapy depends on an individual's response to it. I’m fully aware it may not be as helpful for some people.

 

I feel like I could at least cope if it wasn't as loud as people speaking. It's just too much to try and concentrate on people talking in a work meeting with this constant fluctuating screech that's different in each ear.

 

It is truly crazy you got it out of the blue. No diagnosed hearing loss, correct? Yet, loud sounds set you back.

And 2.5 years in, it is getting worse, not better?

Truly horrible and terrifying. Almost 10 months after my acoustic trauma I am clinging to the hope I will improve eventually. I guess our cases are different, but at the end of the day tinnitus is in the "brain", so one would hope it would improve over time regardless of the original trigger...

 

Just an update: It’s getting much worse. I now have three reactive tones in total. A brand new one on my right side at about 4 kHz that’s just totally overwhelming and gets louder with any external sound. That, on top of my two ultra-high pitched tones, one in each ear, aren’t giving me any hope for my future. I’m canceling a lot of plans now and staying inside my house mostly. My life is nearly totally over.

 

I feel as if I have some kind of acoustic nerve decay that is simply undiagnosable and doesn’t result in hearing loss. It’s just unimaginable for this to keep getting worse with no relief and no clear cause.

 

I'm in the same situation. Things really went downhill ever since I quit Zoloft back in June because I thought it was the reason my tinnitus and hyperacusis got worse last year when I have been taking it for almost a decade. I thought I was doing better in December, but I got a setback and now it's even worse.

 

Hi, I used to be a regular on this board, and then I took a break that lasted almost a year. When I saw this post of yours today, particularly the part where you allude to "flash-bang" moments that wake you up at night, it occurred to me that this sounds like a rare medical condition called exploding head syndrome. Is this something you have discussed with your doctor?

Whether the answer is yes or no, I am so, so sorry you are dealing with all these symptoms. It makes me so mad that ENT doctors, audiologists, and medical researchers know so little about tinnitus, noxacusis, and these other rare maladies of the ear. They are supposedly the experts in all things ear-related, and they're doing their best, but science has yet to reveal all the answers they need to help us heal quickly.

I have learned a hundred times more from my peers on this board than I've learned from the audiologists and doctors I've seen in person. I still take everybody's experiences with a grain of salt because what applies to one person may not apply to myself or anybody else, but all things considered, the average person on this board clearly has more direct experience with and empathy for these ear problems than does any credentialed professional on my insurance plan.

Stay strong and keep learning as much as you can about these ear problems and how to manage them. We may not be credentialed experts, but we have some empirical knowledge about the physical and psychological symptoms and how to cope with them.

 

I don't think this is what I'm experiencing.

My proof is that I will often be dreaming, and the dream will be interrupted by an increasing, piercing, high-pitched tone that continues after I wake.

 

A small update:

I'm now experiencing sudden, brief, sharp, high-pitched rings in my left ear that last from 1 to 10 seconds. These seem fundamentally different from SBUTTs in that those usually are accompanied, for me, by dulled hearing for a short duration.

These high-pitched screeches come on very suddenly and disappear just as suddenly. They're very nerve-wracking and immediately make my heartrate skyrocket and send me into pseudo-panic.

 

@Pinhead, I'm sorry for your suffering and the bad progression of your symptoms.

Regarding reactivity, I think the DCN somatic "miswiring" goes beyond simple interference from trigeminal or cervical nerves (probably most common) but maybe more - I would speculate reactivity is a special kind of miswiring where a presence of sound at specific frequencies causes neuronal misfiring related to other bodily functions or sensory inputs. Variability of my tinnitus (and hyperacusis to an extent) - and intensity of tinnitus reactivity - is clearly linked to the circadian rhythm and barometric pressure.

For example, during bad periods/"spikes," my tinnitus is more reactive—it instantly reacts to, e.g., a fridge hum and even mimics its sound. During quieter periods, I may be able to tolerate the very same fridge without any impact on tinnitus. It can happen on the same day.

Basically, I think my auditory system is so messed up, so I hear now things you don't hear normally or you barely even feel. I would speculate that reactivity is extra hyperactive neurons in the cochlear nucleus combined with these abnormal connections. This is pure speculation based on layman and a superficial understanding of some related papers.

 

First, let me say how incredibly informative this thread is and likely far exceeds any useful information that any of us would receive from a health professional.

And @ErikaS, you have described exactly what I feel. My reactive tinnitus reacts to everything, like running water, door slamming, turning over in bed, my own voice, TV, etc. Sometimes, I feel that it reacts to air when the window is open. I’ve been dealing with it for seven weeks following a 10-minute MRI that would go on to change my life.

After the incident, I continued my life as usual with some extra earplug protections I hadn’t done before. However, things slowly worsened, seemingly no matter what I did. I have since taken a leave from work and started trying the silence approach, wearing earplugs most of the time. It might make me more sound-sensitive, but I will take it if the reactive tinnitus stabilizes. It is truly a horrific condition that makes you live the life of a prisoner. Last night was absolute hell after a day of being out and about.

I pray the reactivity settles because the thought of living this way for 20-30 years makes me panic.

 

I experience SBUTTs like this: my hearing doesn't completely go out, but it sort of dims during the SBUTT. However, it isn't dull afterward. Like you, I find them disturbing because they grab my attention instantly. The only way I've slowly gotten better (even though people think I'm crazy when I say I get them 20+ times in each ear on some days) is by simply ignoring them and treating them with malignant indifference. I think to myself, "Oh, you're back, motherf%^%$#@" and let the higher or lower-pitched ringing finish before immediately moving on with my day. Some days, it's harder to cope because you'll be having a good day, and then WHAM—you're instantly reminded that your hearing is messed up, which can set you back mentally.