How Did Your Hyperacusis Start? Has It Gotten Better?

Hello everyone!

I was curious to see how other people's hyperacusis started. Also, has it gotten better over time? Did you try TRT? (Or did something else help you)

I figure this would just be a good conversation to start for some of the people that are currently dealing with this rough affliction.

Mine started after I was exposed to gun fire in the summer. Which also in turn aggravated my T. I am currently waiting for TRT to help reduce it, and am just trying to ride it out for now.

Us hypercausis people need to stick together!

 

Check here: http://hyperacusis.net/hyperacusis/success+stories/default.asp

 

@lapidus Thanks for sharing! I remember reading that a little while ago, it was a good read. I was just more curious to see how other peoples hyperacusis started. I think I may have muddled the question haha.

 

Gave myself severe hyperacusis and chronic ear pain last year after a botched valsalva maneuva. The pain was horrible, and my tinnitus became so much worse - I was feeling terrible. To add to that my TTTS symptoms (ears like to spasm to certain frequencies) got worse and I was experiencing high frequency distortion in my right ear.

Things were really bad, but I can happily say that I'm doing A LOT better now. Hearing distortiong went away in a couple months, and I can now say that my hyperacusis is 99% gone. I no longer have crippling chronic pain in my left ear (was also having pain along my jaw and on that side of my face) and my sound tolerance seems to be back to normal.

I will make a thread with more details soon. However, I think being sensible in regards to exposing myself to loud noise, and just time were the biggest factors in my recovery. I have been doing some supplements too: niacin, b12, magnesium and NAC but I don't know how much they have played a factor in my recovery.

I really thought the pain was something that I was going to have to deal with for life, but very slowly I did recover and I feel my symptoms have improved in leaps and bounds over the last few months. Hopefully I don't jinx myself by posting this, and I will continue to be careful with how I look after my ears right now because I'm still not 100%, but I would say to anyone really struggling with hyperacusis currently to try and stay positive, be sensible with noise exposure (use ear plugs when needed but don't go crazy with them) and trust in the healing power of time.

 

It is terrible. I never knew that it could happen to someone. I was exposed to an adt alarm that went off. I think it had to do with the high frequency of the alarm. I never used a gun in my life and could care less about music, let alone loud music.

 

@yonkapin I hope to have to same success with Hyperacusis that you've. I've sort of done the same thing.

Due to my ears now being able to pick up on high frequencies produced by electronics, I had to drop out of school and move back in with my parents because I wasn't able to stay at the residence.

However while I've been waiting to start sound therapy/get evaluated (5 months going...*sigh*) I've noticed that my sensitivity has gotten a bit better (*knock on wood, throw salt over the shoulder*). I noticed that now higher frequency sounds haven't bothered me as much. About two months ago when I first came home, I went to the local grocery store and the scanner used at the counter seemed REALLY loud to me. Recently, I went a couple times last week and noticed that I don't even really notice the beep anymore! So I hope thats a sign that its getting better.

I agree with you that keeping your anxiety in check and trying to stay positive is key! I've noticed since I've done that, as well as trying to keep my TMJ in check, that it seems to have gotten a bit better. Once I'm able to get evaluated and find out where my LDL's are at a special clinic in about a month, then I'll be a bit more adventurous.

Like you also said (Haha I feel like a bit of a parrot, but I feel its very true!). I almost never really used ear plugs. I sort of spent a lot of time at home and then just slowly started making more trips outside. What I did, I would wear my regular Bose headphones, which sort of look like big ear muffs haha. So they still allow me to hear a lot of the sounds around me, but help cut down the db by I would say a good 20db. My biggest enemies were parking lots (dam you auto lock devices!). So even if a horn went off, it would help take the edge off of it.

I echo your sediment exactly. If theres someone who thinks that they may have hyperacusis (mine is more mild, and mostly effects higher frequencies) then it's important to try and get evaluated, try and still expose yourself to noise in a safe environment and give it some time and patience.

Sadly, hyperacusis can get quite nasty as I'm sure many of us know. It's still a mystery, and hopefully more resources will go towards it in the future as I'm sure hearing related issues such as T and H will be brought more to the forefront of medical research. Especially with my generation as we seem o be very rough with our ears.

@beemovie I'm really sorry to hear that. How is your H doing now?

 

Mine started at the beginning of this year unfortunately,I never seen it coming.Ive had T for 3 years prior to H and felt completely habituated to it I didnt give a crap about it and just tried to be as sensible as one can while still leading a normal life.I got it from an extremely high pitched sound that burst through my tv.

 

Mine crawled in after a course of Transtympanic injection for Meniere's disease. It was mild for a long time, then it peaked and turned my life into a living hell for a month or two. Then, one day I lost hearing completely on higher frequencies (above and including 4kHz) on Right ear and it disappeared. I think as I don't hear those frequencies anymore I don't have hyperacusis.

 

i had mild hyperacusis and TTTS symptoms the hyperacusis is gone and i only have tense numb cheeks but im sure it will fade away overtime aswell

 

Do any of you experience a humming/buzzing in your head with H?

 

@Mike34 yes I have a hissing.

 

Hello Guys
My T is caused by infection...H soon followed... had terrible experience with H..
all sounds were distorted and louder. now its is far better than before.
My question is is there a connection between H and Reactive T?
I still have problems walking down busy road amd crowded areas such as restuarants..
i no more hear distortion of sounds neither i feel they are louder...but they definetly
irritate me...and i feel my Hissing as gone up a notch....returning to quieter place qualms
T down to its normal level...

 

I don't know what caused mine. I was fine in the morning, did my usual 50 sneezes (BIG sneezes) that I have sometimes in the mornings... for weeks sometimes, and then in the afternoon, I couldn't understand why I had such trouble with simple noises.

I thought my sneezes burst an eardrum or something. Doc said no. Doc also said the violent sneezes wouldn't cause H. But, if they don't know what causes it, then why couldn't that be a possibility? There was NOTHING I did that morning that was different.

 

Mine goes through stages, seems to improve slightly and then I encounter a noise that is too loud (doesn't take much) then it goes back to where I started or slightly worse. Cycles like this non stop for the last year since my ear injury. I now try and stay protected as much as possible, even around the house if I have to. Each cycle my T and H gets worse.

 

@yonkapin thanks for sharing! I hope I end up like you.

 

Mine began last December. I don't really know why, as I've had bouts of brief H in the past with no T. I suspect in my case, that facial nerves or TMJD plays a role and so I don't know there will be much hope for me in it going away completely

I have made HUGE improvements only to end up in massive setbacks. I am in the worst one yet.

It's soul crushing.

 

I got T from a 20 day course of a pain relieving drug called "Relafen". H crept in a month or two later, and has been persistent for the past 1.5 years. It is not severe H - I can get by in most situations wearing earplugs, but I'm wearing them almost every time I leave the house.

It can be soul crushing when the sound of my 4 year old son's laughter brings me pain.

 

My H preceded the onset of T

 

I had very faint T then I went out 2 nights in a row out to a bar with loud music(like a dummy), that caused my H. My ears hurt and everything is very annoying almost like nails on a chalkboard. I've had H for about 2 weeks and it hasnt gotten any better. I am more concerned about the H than the T. I'm nervous

 

Went hunting with my brother, forgot to wear earplugs. Had symptoms ever since. Maybe fired a dozen shots or so from a 12 gauge. He's fired hundreds in his lifetime and has no T or hyperacusis.

3 sounds in right ear; constant high pitched tone (around 8k, I can feel it when I yawn it becomes very loud and clear), some occasional electrical chirping like a cricket, and a "metallic" ringing that sort of accompanies the tone at around 8k (it's kind of like the noise when you hit a hammer off of a metal railing). In addition to those three sounds lately I get higher frequency "pulsating" occasionally, seems also to be near 8k. Happens when I walk or run or sometimes when I'm just sitting down playing playstation.

As for the hyperacusis, I have slightly above average LDLs in my right ear. It seems my right ear is highly sensitive to frequencies around 2k (I've pinpointed this doing notch therapy). I'm not sure if it is hyperacusis but I hear things around this frequency as "distorted" and "staticy". Could be dyacusis, recruitment, or hyperacusis. It seems the best ENTs in Canada can't even tell me that. I myself have thought many things...damaged auditory nerve, busted or broken hair cells, fried supporting cells, damaged ear bones...who knows.

In addition to those symptoms I also have occasional TTTS symptoms in right ear. Ear always feels like I cannot pop it and flutters sometimes in loud environments. A couple ENTs suspect I may have TTTS but there are no treatments aside from tensor severing or decreasing stress and anxiety.

I've had ABR, audiogram, and conduction tests and I show up normal on everything (except the ABR- my wave peaks at 7 instead of the usual 4 or 5). I'm scheduled to have an MRI soon but it is just to rule out acoustic neuroma. Doesn't matter though because I know what caused my symptoms; my own stupidity and neglect to wear earplugs on one day.

I did this when I was 21 years old and I feel like my life was robbed from me. Not a day goes by where I'm not tormented by regular sounds...including my own voice and the voice of loved ones. I am considering saving up and buying a hearing aid to maybe notch out the frequencies that I hear as distortion. That way I could hear my girlfriend and not cringe at the sound of her voice.

I wouldn't wish this on my worst enemy. It's not life threatening, but it is life changing. You realize that life is not what you thought it was, and that people live with chronic pain (your now one of them). I often find myself obsessively scanning science and health sites for updates regarding hair cell regeneration or potential treatments for hearing loss and tinnitus. I'm now 28, maybe some form of treatment is possible in my lifetime besides TRT. I've come to the point of acceptance but it still sucks. The worst has to be the distortion. It makes me very anxious, it's almost like a sort of chronic pain. Whenever my right ear experiences temporary "normal" tinnitus, I get excited and hope that the chronic tinnitus is changing. But alas, here I am, seven years later with no change. It is a horrible thing to say but I honestly don't fear death anymore. The only time I get relief is when I'm dreaming. When I dream I don't hear it. I have a great girlfriend, great family and am on the verge of getting into medicine, but I still feel like everything is not as good as it could have been. I messed up big time.

 

@kmohoruk thats intersting that you say you became extra sensitve to high freqsuencies - I swear this has happenned to me with lower frequencies in my hearing ear - I have meniere's.

@aylp I'm sorry that you have meniere's and thank you for sharing your steroid shot story. I think the risks are talked down by enthusiast ENTs with regards to their interventions. How are you doing now?

 

See my Profile for details...

Basically prior tinnitus only, then ototoxic meds added the H. And clearly the meds, no iota of a doubt. (Neomycin and then Amphotericin. Oral not IV).

P.S. Please let us know when you start the TRT and if the "progress curve" changes noticeably for you. What I mean by that, is that H for me (and others I have talked with) tends to go down steadily over time if not severely re-triggered. Mine drops off about 10% per year (but doubt it would go to zero in 10 years???...not sure as did not get the chance to find out last time as got re zapped after 6 years).

Take care, Zimichael

 

Hey Zimichael, how often do you get spikes and do they settle to baseline by the next day?

I've had a few spikes in the last week, although I have the impression they are happening with less regularity and the spike is not lasting long, sometimes seconds to minutes of course if you exclude last Sunday when a 30m visit to the local cafe caused the imaginary tire in my ear to start deflating over the period of 4 hours.

 

Mark... I don't get 'spikes' really unless I am being a real space cadet and missing a bad sound situation that hits me blindsided. As I am always using plugs for brief periods when in "danger zones" I avoid "spike material" - like kids in the library or food coop doing unpredictable kid-scream thing, or over-amped loudspeakers in supermarket suddenly blaring some request for more check-out folks (and yeah I tell the manager to turn the bloody volume down!), etc.

If I do get spiked, there seems to be a pretty direct relationship with a number of things:

1. If I do the dumb thing myself, like drop a saucepan into the sink..."Ka-BLANG!" when washing up, I hardly get any spike at all. However, if my back is turned and someone else does it, I get spiked! I believe this is the ol' Stapedius Reflex at work because my body is catching the micro-second of action before the sound 'directly', so to speak. I'm doing the "ka-blanging" so my body knows it's coming, and Stapedius kicks in from this prior viscerally connected 'knowledge'...Clear?!

2. So if someone else does it and I get spiked, the "zinnnnng EEEEEEEEEEEEEeeeeee" tends to just last for a short while depending on the intensity/volume/type of sound. Hard, sharp sounds last longer than louder, but soft lower frequency sounds. In any instance though I get zapped and immediately put my index fingers in my ears (after the fact - as by definition missed protecting myself right) and "waggle" my fingers inside my ears up and own, back and forth, generally making a fuss in there. So "Fuuuu-ffuuuuu-ffffuuuuu-fffffuuuu -fuff" type sounds in rapid motion. Not too vigorously and not for more than 10-15 seconds! But vigorous enough to kind of....hell I don't know??? "Distract the feedback loop"??? I also pull my bigger parts of my ears around and massage and pinch them a bit...Don't worry about the looks you get in public by the way.
All I know is that it seems to help and reduces the "grievance" of the spike and bring things back to baseline quicker. Could all be hogwash but it works for me most of the time. Could be a as simple as a mental distraction thing, but after decades of doing this why mess with what works! Maybe it's a sort of "acupressure" wanna-be thing too, as that is where a good number of the darn javelin size needles went during my acupuncture sessions in Bangkok!

3. Duration of the "spike causer" seems to be paramount to longevity. If it's a quick half second sound that did it I am 99.9% OK in short order. Now I am NOT talking gunshot or the like OK! If the sound exposure was longer, that gets more problematic and seems like the spike is more serious.
Though this hardly ever can happen as long as I have fingers...as they go in my ears immediately if I'm caught with my pants down and no plugs in time. E.G. Silent stealth Ambulance suddenly switching on a siren, on a quiet country lane, 50 feet behind me, where no ambulance should ever be, while I'm taking a walk listening to tweety birds in the trees, and not hearing the super quiet 'ambo-tyres' on the super new smooth asphalt...etc., etc.

4. If I get a more serious spike, like one that really gets my T up a good noticeable amount and has not come down after a minute or two, then I pray, or cuss, or freak. If it has been from "duration" of sound (like the threshold sound level in 2012 that zapped me without knowing it - see Profile), then that tends to be "permanent"! If it was brief and I semi-caught it in time, I immediately get out of Dodge, go home, take a benzo and get a good night's sleep. That will generally put me back to baseline...not that baseline is much fun by the way!

Ummmm...I think that covers it.

Take care, Zimichael

 

OK Thank you.

So I guess from what you are saying you are normally back to baseline the next day?

What about the pain from your hyperaccusis. Do you experience that still?

 

Mark...Not trying to be a smarty-pants here, but actually most of the time I am back to baseline within a few minutes from a "brief spike event". That's one that is loud enough or harsh enough to "spike" me, but not a real "baddie one" where I take more serious action = to get home fast, take a benzo, get a good night's sleep, pray to every God imaginable, and cross my fingers, legs, toes, whatever.
So far, apart from the events that have led to 'permanent' increases this has worked. The 'permanent' increases are where it takes me years to come back down to some form of tolerable level = the H that is. *[My < 10% per year estimate]. The new T levels have always stayed at the new higher volume levels.

So indeed, for the H, back to baseline next day would be accurate - but not with the implication that it takes a night's sleep to do that OK...as that is the exception for a spike. Only bad spikes need that, and they happen...maybe once or twice a year if that. (I avoid or am protecting in such places where that could happen).

The "pain" from the hyperacusis is......well it's a tough thing to describe isn't it?! It's not like my gut pain. Or putting a machete swipe into my leg, etc. It's a deep, weird, nerve, penetration, assault, zing, zap, shock, kind of thing. It's not exactly "pain" in a normal sense. If I get zapped badly I get sort of semi-knocked out and disoriented for a brief period. Shock maybe??? Definitely an immediate "verbal exclamation" associated..."Arrrrghhhhhhh-Owwwww!!!!!" or something more akin to sailor vocabulary.
I say this as I have seen explanations/definitions where Hyperacusis means one has "ear pain"...but never been able to determine if that is like 'all the time'??? Or if just when around sound in general??? Or when get zapped???
I do not have "ear pain" all the time, or around normal speech level sound, etc., etc.

And yeah a 30 minute exposure time in a cafe...What without plugs or semi-plugs??? Gooooooo...That would create an "ascending impact T thing" for me fairly quickly unless the cafe was full of bookworms writing Harry Potter novels quietly drinking coffee. I don't call that a "spike" though, but maybe I should...For me that's too much exposure time at louder than acceptable (again, for me) volume, which then brings on a steadily increasing level of T (sound reactive T), that is an increasingly 'uncomfortable' progression. And dangerous. This is the shit that can cause me more permanent damage than a quick, short, sharp spike would likely do. RPG's and Flash Bangs aside of course.

Got it mate?

Take care, and patience is a virtue in these things.... Best, Zimichael

 

My hyperacusis started slowly, seemingly out of nowhere in the fall of 2012. It started with a spasming of the muscles in my left middle ear whenever I spoke and over the following 6 months I developed tinnitus, dizziness, ear pain, facial pain, crushing headaches, awful fatigue, nausea, and very severe hyperacusis.

I enrich myself in sound that I can tolerate every single day. I also regularly follow Dr. Jastreboff's music protocol for misophonia. I take ativan and betahistine every day and I think they help slightly, but not very much. I have seen zero improvement otherwise.

The hyperacusis and tinnitus are bad, but the pain, dizziness and fatigue combined with the former make it difficult for me to do menial things like go to the store or to doctor appointments. I am on disability and I'm so sickly and in pain that I can't find much strength to do anything. I don't spend much time on internet forums anymore because I also have very bad pain in my wrists and hands.

I do not enjoy my life.

 

@Sen please hang in there!!!!!! I know your pain , but don't give up, hopefully one day it will get better, I try my best to think that myself, we need to keep hope that our body can heal.

 

It's a deep, weird, nerve, penetration, assault, zing, zap, shock, kind of thing. It's not exactly "pain" in a normal sense.

Possibly one of the best descriptions I've seen. Its so hard to articulate just what it is like and convey that message effectively. If you can't find the words, whole medical appointments get lost because they just don't get it, even on the rare occasions they actually listen.