Hyperacusis Has Improved Significantly in a Span of Almost 2 Years

Is she NHS or a private audiologist, would you be comfortable naming her? It's just that I am looking for someone with experience in neurosensory disorders, and being an audiologist is a bonus.

It's a well thought out theory. I have bad hearing loss that I have had for many years, and have struggled to hear what people have been saying for decades. Partly due to being hard of hearing but also my brain heard the voice but couldn't make out the words. My ears and a vertigo type problem have been an issue for a much longer time than tinnitus, but considering the bad condition my ears were in, I guess it's no surprise it's hit me hard.

You make a good point of being reactive to most things. I guess I can sit in a home office and work all day but the moment I have a work call, boom - the moment I step outside, boom. But if I have a conversation face to face, no problem, typing on the keyboard, no problem, making food, no problem, dropped a toilet yesterday, no problem.

I guess the frequencies play a part here too as I'm not reactive to everything.

Does your tinnitus return to baseline after the event - for example if you are out and tinnitus is spiked, does it fall back to baseline when you step indoors?

Mine does not, if I go outside it will spike and when I come back inside it will continue to be spiked for at least the rest of the day. So I notice my spikes more in a quiet room but this is in general either after being outside or digital audio of some kind.

 

This is the same problem with digital hearing aids too. That's what I tried redundantly to explain to those who work in the ENT industry, however the problems faced were not only their lack of understanding to these horrible symptoms, but the inexperience with their new computer software and the technology of increasingly complicated digital devices. Then, there's the digital devices itself, which (in my experience) cannot be addressed or evaluated at the appointment either; the only option is to mail them back to the factory or wherever they come from. The analogy is like taking an electric vehicle to the car shop, requiring a mechanic to have specialized training/equipment, taking weeks to months to order a part, and yet, the electric vehicles continue to break down thereafter.

The sound quality of digital aids were terrible vs. analog devices. Perhaps it is different now, not sure. The point here is that I found artificial digital audio waves, especially loud ones, to be very painful, uncomfortable and harmful, causing a worsening, and I believe it's the same to all those with specific hearing issues, reactive tinnitus and all forms of hyperacusis.

 

Yes. During a setback, I often experience additional noise in the form of what I can only describe as sounds resembling Star Wars lightsabers and industrial factory noises. These noises seem to always reemerge when I’m in a serious spike and they become the forefront of what I’m perceiving, blocking out my usual tones. Once the setback naturally resolves itself, these noises will vanish. It has played out like this every time so far, but I find it strange how they seem to come and go in that manner.

Thankfully, I haven’t dealt with setbacks like that in a long time now. It hasn’t shown up in like 6 months. It’s also not to be confused with my regular spikes (from car rides, etc) where I experience brief amplification in the volume of my familiar tinnitus.

I don't particularly mind it when the volume of my usual tinnitus rises, but when those lightsabers and factory-like noises make an appearance, that's when I find it very challenging to manage day to day life. It's relatively infrequent for these noises to occur nowadays.

 

Thank you for showing us this link. I love his essay and wish more people would read it.

 

Hi mate, sorry for the delay in getting back to you. It’s Clifton Audiology I attend. You’ll be seen by both Mercedes and a gentleman called John. I wasn’t blown away by Mercedes’s online profile at first and had a lot of doubts of even attending. But speaking with her face to face, her credentials became more apparent.

You are quite capable of doing things that don’t spike your tinnitus then? Maybe I’m not as observant at things that don’t spike me. But in regards to my spikes, they don’t recede straight away after I’m removed from the source. If I go out for a walk it may take from 30 minutes to a few hours to recede back to some normality. Worse spikes can last from days to weeks.

I have experienced the lightsaber tone you are describing, it’s a strange one for me as it doesn’t present in the ear but sounds like it’s coming from outside the head, I can’t really describe it.

I’m in the same boat I think, I’m more at ease with the fluctuations in volume of my tinnitus. But when an additional tone joins, that’s when I get anxious. The distant echo/voice tone is the one that throws me off the most.

 

I totally get you when you say the lightsaber/buzzing tones sound like they are coming from outside your head. Feels like your head is vibrating at times and it also deceives you into thinking that the buzzing head tinnitus is actually an external sound near you.

I remember a couple instances shortly after my onset when I would mistake the lightsabers and buzzing tones for a helicopter hovering near my apartment complex. I would check my windows and ask others if they heard any helicopters, but the answer was always no. Strange indeed.

 

Do you find that the clinicans recognise the various symptoms that you describe or are you met with a bit of a glazed stare?

When I attended a NHS audiology clinic it was the latter, which felt a bit isolating. You kind of want to know that there are others out there experiencing similar, and that your own symptoms don't make you an outlier.

 

I think that is part of the reason why I’ve agreed to continue with my sessions. At the consultation she wanted to know every aspect about my tinnitus; how many tones, types of tones, reactiveness and how they react if they do. This alone was refreshing, most doctors hear the word tinnitus and just characterise it as a mild singular monotone.

She emphasised with me how common my fluctuations and tinnitus characteristics has been in her experience. So it’s reassuring to not be made to feel like you’re the worst case in the world. My only grievance is when I asked her about other clients and she said ‘there’s been a few in your situation and worse, who have recovered and got to where you’re trying to get’ I’m maybe being pedantic about her use of the word ‘few’ I would have liked her to have said something along the lines of ‘lots’ but of course everyone’s suffering is very subjective anyway.

She also provides one day a week of her services to the NHS, I was surprised when she told me they don’t offer extended audiograms at the private clinic, but they offer them on the NHS as a potential diagnostic tool for onset/worsening of tinnitus.

 

@Hardwell, this is interesting and informative.

Please keep us updated with her treatment and if it proves useful.

 

Nice. It's quite rare to come across someone who genuinely wants to understand your situation especially when it concerns tinnitus.

Best of luck to you.

 

Good luck brother, I hope it goes well for you.

 

I’ve been noticing even more sound tolerance improvements this past month, unexpectedly. Like it feels sudden out of nowhere... I went to The Metropolitan Museum of Art yesterday and while it was jam packed with people especially at the entrance, I was able to take off my hearing protection once entering the exhibits. I’ve spent over 3 hours in the museum and had no issues with the chatter and noise happening inside. It was relatively pleasant experience. It’s been a while since I last went here, so it was nice to revisit it again. The Ancient Egyptian exhibit still remains my favorite exhibit to see over there.

I thought I reached the peak with my sound tolerance improvements, which was fine by me, but it appears like I’m still improving. Now, it feels like I'm nearing pre-onset sound tolerance levels. Impulse loud noise like door slams don’t phase me one bit. I could stroll the noisy city streets without ear protection (albeit briefly) if I wanted to, but honestly, it's too nerve-wracking and not good for the ears at all in my opinion, even if I technically could. My tinnitus could spike from loud outdoor city noise. There’s just too much going on out there, so I need to be careful.

Improvements to sound tolerance seems like a slow and continuous process.

 

Great to hear @ZFire

I share many of the same experiences as you. What I sometimes do notice though, is "ear fatigue", more buzzing head, if I've been out for a long time somewhere busy/noisy. But it's only temporary.

MOMA in NY is such a great museum, I've been there twice.

 

He meant Met. But both are worth visiting. Ah, memories of my normal life.

 

@ZFire, I'm curious what was the timeline/progression of improvements for you?

My hyperacusis seems stuck in an elevated level. Early on it was worse - I had some days where all sounds were truly insane, especially after waking up. It was when I was protecting too much, I stopped that and it stabilized.

Now everything sounds louder - like 20-50% louder depending on the type/frequency of sounds. I have no problem with tolerance. I technically can "tolerate" most sounds. Like you, impulse sounds like door slams are not a big deal at all. Plates clanking are unpleasant but not horrible. It's just most everything is louder and very distressing. The only noises that sound "normal" are speech, birds, typing on keyboard. Most everything else is louder.

The worst for me continue to be low-frequency mechanical noises like diesel engines or Harleys (thankfully the latter are gone for winter). Also loud white noises like forced air is intolerable in louder parts of the house. We switched to electric space heater radiators. I have that, like you described, daredevil sensitivity. Unfortunately we have this factory a good half mile away from our house. It emits a mechanical hum. I barely could hear it before indoors, outdoors it was noticeable, but not terrible. Now I hear it anywhere close to windows on one side of the house. Eating/chewing noises from my family are hard to tolerate, I wasn't noticing them before. Etc.

Has this daredevil sensitivity improved for you? Or did you just learn to tolerate the elevated volume better?

I gotta say if it was just this form of hyperacusis and no tinnitus, it would not be so bad for me...

 

That’s interesting.

Honestly, I used to think overprotection could be making me worse, but now I'm officially on the side that believes overprotection won't necessarily worsen your condition. The reason I say this is because I’m currently this past month finding myself having to wear hearing protection daily for hours (construction roadwork outside where I live), and it hasn’t impacted my sound tolerance or sensitivity whatsoever. Like I’m not feeling any negative effects from having to use lots of hearing protection.

I think in the worst case scenario, overprotection will temporarily increase sensitivity, but it is completely and easily reversible.

Once my hyperacusis began to manifest itself, it gradually worsened over a span of about 4 months and remained at that level for a period. At some point shortly after, I experienced a random improvement in tolerance and sensitivity out of the blue. Don’t get me wrong, my hyperacusis was still unacceptable then, but it got to a level where I could finally tolerate some sounds at least. And from that point onward, things began to take positive turn... some fluctuations, but gradual improvements over time. Month after month, I started to notice how I’m improving — a significant increase in my ability to tolerate sounds compared to previous months. The progress was very slow, but the difference was like night and day as time passed. If you’re wondering, I never once reverted back to severe levels once I experienced that random improvement.

It took approximately 2 years to return back to near normal levels of sound tolerance with minimal sensitivity.

Good question. Definitely mostly improved, but maybe I am tolerating some of the elevated stuff better as well too.

But the heightened sense of hearing has definitely reduced to a degree that I find acceptable. I have tested some of the things that were very amplified to me when I had this, and it’s far less prevalent now. I can’t hear the same electricity noise from my bathroom light fixtures like before, or the harsh street lights buzzing outside late at night either anymore. The sound of a refrigerator hum doesn't overpower me or completely dominate my auditory perception either. And the more further away I am from it, the less overpowering it becomes which wasn’t the case before.

I’ll be honest with you, I still hate being around idle car/truck engines too. It’s more of an annoyance than anything, but I do still feel like it’s louder than usual on occasion. Truck sweepers are the worse. They feel too loud at times. I always protect around those noises.

I will say one thing though, something about my hearing feels a bit odd. Neck movements seem to influence it. Like, I notice that I’m unable to hear certain things or my ability to hear them varies based on the position of my head and neck. For example, my gaming console can emit this high-pitched coil whine, if I turn my neck to the left, the noise is either reduced or completely diminished. Do you experience something similar like this too? I don’t know what heck that’s all about.

 

@ZFire, have you started working, I mean as in employment? Or are you still waiting for things to further improve before you can?

 

Oh God, I'm not alone. It's like you're talking about my symptoms.

I don't know if it's a cervical issue and if a chiropractor can help. What do you think?

 

I’ve been working for a little over a year now. I needed to find some work ASAP. My emergency funds were dwindling rapidly low at the time.

Initially, it started out as a fully remote position, but now it’s a hybrid schedule — 3 days WFH and 2 days on-site. It proved to be a helpful way to ease back into the work routine with shit ears I must say.

It’s the weirdest thing. I was thinking the same about it being an upper cervical issue too. Think it’s time for me to schedule a visit to a physical therapy clinic or a chiropractor.

Glad to see I’m not the only one with this weird issue...

 

Do you remember when your Daredevil powers subsided? My Daredevil powers have shown not even a wee bit of dialing down. I still hear (~60 days since hyperacusis began) my Pixel 8 charger loud and clear.

 

It took a while for me to lose my Daredevil-like super hearing ability. Way longer than 60 days. I tried not to obsess over it, but I do remember monitoring its decline every six months, comparing its status to where it stood initially.

It was during these evaluations (approx. every 6 months) where I started to notice the super hearing ability dwindling bit by bit. Eventually, by the 2nd year, it just wasn’t as prevalent anymore. Certain sounds just weren’t as prominent or amplified anymore.

It seems like as I became more desensitized to sound that I found to be louder-than-usual, my heightened sense of hearing began to fade. I attribute the desensitization to time and some household sound therapy.

I have always wondered if my Daredevil-like power diminished significantly due to some kind of hearing loss or other factors, but I can’t say for certain. As far as I can tell, my hearing still seems relatively okay. So probably no.

Hope this helps.