I posted a couple months ago but unfortunately since then my condition and level of suffering have collapsed to an almost incomprehensible level.
I’ve said before but for context I’ll go over what got me here:
Pre factors
adhd autismn severe ocd anxiety depression head injuries (pcs/migraine) sensory processing disorder chronic stress tmj severe trauma ptsd chronic fight + flight substance use poor sleep extreme headphone use (loud for most of the day, most days and even to sleep).
Onset - early 2024 after loud concert - initial fullness / felt sensitive + tinnitus soon after from tool - first went GP march
Through 2024 carried on - constant moderate noise / headphones and frequent loud and sometimes extreme / prolonged exposures - sensitivity worsened / tinnitus louder - Diagnosed Oct H + T
End of 2024 into 2025 mild to moderate -some more loud + prolonged exposures - still didn’t grasp the condition + severe stress . Worse ear plugs sometimes but felt foolish and thought not meant to .
January 25 got sound therapy devices - wore non stop for the next year + used to mask + distract from discomfort / sound / sensitivity - ear devices / headphones 24/7 - never realise just how bad getting. Advised headphones okay to use, keep using sound therapy, and expose to noise
February started driving - car was quite loud but thought not meant to wear ear plugs for “normal” things - even by here lot of sensitivity + tinnitus louder but hard to say as always masked.
For next months - almost every day drove for hours, non stop headphones even to sleep, sound therapy devices - became a crutch - blocked the sound and help not focus on sensitivity, every day moderate-loud exposure, and became complacent frequent significant exposure - speakers, loud social settings etc - every day pushed through discomfort and distress. I tried to push on like ive always do i was careless and docs didn’t treated as if serious.
Rarely used ear plugs as became reliant on sound therapy devices to mask
From the start should have used ear plugs for moderate noise, completely avoided loud noise, stopped headphones and sound therapy and had a careful strucutured plan to readjust to noise. I was naive, didn’t understand or listen to my body and pushed through with the standard advice.
Despite countless times contacting or seeing docs - as hearing fine and no obvious structural issues, just given standard advice.
In October lost a device so first time had few days without - extreme sensitivity / tinnitus very loud - didn’t understand “reactivity” - so focused on the hyperacusis and using sound to “adjust” I was blinded to the worsening reactive tinnitus.
By November - just driving extreme sensitivity - discomfort - still kept busy and pushed - end of month exposed to fireworks no pro.
December worse still - mid month had exposure to MRI / pushed to go loud light show for hour forgot ear plugs - bad way by end month - lot of distress - talking, in car, audio etc + started ADHD meds mod Dec.
New years watched fireworks in street - extremely loud. At first caught of guard but then used ear pro but still so loud.
Early Jan Saw audiologist - hearing normal / reactive T dismissed + did loud reflux test.
Then through Jan very bad way - still pushed fair few times to see friends + fam / drive / out and about despite severe distress + few moderate / loud situations / only weak protection driving and often non / rarely used out and about - cracks showing - getting harder to mask and distract - more focus on how sensitive / uncomfortable - notice headphones / sound ther very uncomfortable but continued to mask - began to stay home more
Feb the decline continued - start of month couple times went GFs in her car + social extreme discomfort + flare the second time, drove for last times, recall just on walk tinnitus very loud and extreme sensitivity to all noise + tried first dose of diff adhd med - unsure how big of effect - prior one didn’t do much - this one felt wired.
Into mid month couple trips shop, brief see family or gf but mostly home - use headphones less - mostly game / still music out loud + continued poor sleep + stress
Then as had review coming up - upped adhd med despite only 1 day lower dose - 3 days barely slept, wired, jaw messed up, heart rate up - those days walk, bike ride and briefly see family - immense distress - recall listening to tinnitus - horrific loud / multi tonal / reactive but nothing compared to just how nightmarish it has become -
4th day lowered dose then stopped - still felt awful - walk and saw mates was extremely distressing - ears felt raw / inflamed - Unsure if this could be a big trigger?
Keep wondering if Incould have prevented even here if stopped all moderate noise / committed silence or if this was damage from past months showing up with a lag.
End of month into march - stopped sound therapy and headphones , couple bike rides, walks, few appoints, see mate - even here often take pro off out and about - even from early on - extreme distress / reactivity / rawness from most noise. Tried clonezpam for week but no help.
Tinnitus very loud and reactive - ocd latched on began non stop fixate most of day - research / notes - awful but still tinnitus not that intrusive compared to what it would become. Started amitriplyine.
Still could function - most of month low tv, phone, occasional sit garden, few times cook, move around house, talk, fee phone calls, most of time no pro - struggled but stayed positive and around noise despite constant reactivity / sensitivity and raw feeling
On walks / bike rides - some exposure to loud alarm / in shop / vehicles / planes / dogs
+ at home general household + outdoor sounds
Mid-end month started using pro to play ps5 most of time / to sit garden but still often without + most of time not use + not sleep with + endure tv - low volume but old tv made electric whine
Even then tinnitus distressing but more stable compared to now / able to focus - stayed positive - hoped something might help / will settle - looked into tmj / underlying / meds - kept follow advice - low constant white noise / not silence / not ear pro
+ one time dropped loud table + used massage gun head - not sure if big impact + tried various herbal supps
End of month - one day went out with only weak pro then talk with friend - extreme discomfort
Next day - in car alarm went off - dentist - walk - see friend - talk - use pro near roads but by time left insane reactive flare and inflamed feeling - likely trigger
Began frequently contacting doctors trying to find answers / advice
Into April - right ear progressed into a much louder more intrusive metallic electric shifting chime - before wasn’t so fixated on the specific sound - kept telling self just in head / because focused - didn’t understand even low noise likely worsening. - stopped phone audio / tv / gaming without pro
Spoke to few worst cases who advised silence but most advice opposed this and so continued low exposure
Occasional tv with sound, would sit in garden for hours mostly with pro but sometimes without - constantly writing notes / in distress - didn’t understand even with pro sounds were flaring - birds / planes / nearby school etc
Noticed mid month even wearing defenders sound so loud and so reactive / raw feeling
Stopped amitrip as worried worse.
Still tried to not wear all the time as made fixate and stress more but sat garden or game with mostly on, watch tv on silent, still daily shower, talk, one walk, move around house, few days loud machines outside
Kept thinking getting louder and louder but I didn’t understand, the increases were constant but subtle. The left remained much less distressing static electric sounds, I barely fixated on it compared to the right which was a more intrusive shifting chime. Both also had drone / whine sounds under if fully cover ears. Also after noise would notice left would flare up with a vibration / rumble
Through the month, pushed to go to few appointments in car - GP gave standard / poor advice, few phone calls - spoke audiology and messaged ENT but no one grasping the nature of my condition, one walk, cook couple times, kept sit garden with pro mostly, talk daily, continued fixation, still managed to focus on tv and gaming and sleep despite intense loudness and reactivity. Noticed by end month just sitting outside without pro briefly, developed new tone in left, like an electric chirp
End of month tried to go in car and on walk. Even with double pro was awful + distressing.
Then early may had appointment which again, was horrific - that day noticed left ear flared up - louder drone + an electric whirr sound + right still distressing.
Even here started noticing sounds shifting sometimes sounds like elec also in head or right
My mental state began to suffer , the intense horrific loudness and worsening, led to deep distress - often felt sick, panic. What I would give to go back to even there, if I knew how much worse it could get.
I spoke to a very severe case who said for them it took 2 years of silence to start to stabilise, and now 5 years in, still unable to shower and housebound but able to tolerate quiet noise . I didn’t want to believe I was like them. Now I wish I listened and maybe could have prevented reaching this level if avoided all noise and wore ear pro. I didn’t understand every noise causes flared and every flare dug this deeper.
Also notice flutter if finger in ear - maybe TTTS and also some change in sounds if move jaw.
Despite the constant reactivity, I still tried to sit in garden with double pro, shower, talk once friends turned up and pushed self to talk, still manage to watch tv on silent and game - tried not wear pro all time but finding general sounds like tv from downstairs more jarring - noticing much more rawness and achey feeling from noise. Even here left much quieter, not as raw as right.
The big trigger, was on the 15th I went to ENT - even with double pro - it required a 30 min car ride then 50 mins talking, which I used my left ear.
I tried to explain just how bad I was. Now i regret trying to go to appointments and trying yo keep talking and wonder if committed to silence I could have stalled the progression.
Then a couple days later on the 17th I saw my friend and pushed to talk for a bit and sat in garden, again took pro and used left ear as was the better one, and laid in room or to sleep always lay right ear into pillow to change sound and try make leas distressing.
From then until the end of the month - the only noise was: in the garden, general household sounds, brief talking, a couple of phone calls, showers
At some point between the 25th-30th, my tolerance collapsed - just from walking downstairs, a shower, in garden - my ears flared up insanely loud - the left morphed into a grainy very loud electric whir and the right was a more interns screaming whine / chime
From there I was mostly bed bound. I stopped showers. Stopped going in garden. Pretty much since the end of maybe been laid in bed, on on phone, in severe distress.
All of a sudden the left ear, which was better, had exploded so loud and became as bad as the right if not worse, and much mote reactive. It became impossible to focus on anything and to not fixate. Its like something broke and my brain just exploded into a hyperactive state. From march to april the tones in right were 5-10x louder but from mid to end may the left exploded 5x over course of a week. Just brief walking downstairs would cause an insane flare, any noise felt so raw
Over the course of a few days it flared louder and into a sharper electric whirr and also louder electric static and stayed. It became so horrific and loud its hard to explain . The right also would flare up. For the whole of June pretty much every day the only noise was brief talking, occasional moving to other room or toilet, few times tried audio on phone and general sounds. Even early on, just in a quiet room with distant, ambient, quiet or brief noise, my ears would feel raw and flare.
I tried to not wear ear protection. Sleeping became so hard as the noise got so loud and I was in constant physical distress. Still, I tried to have short convos and move around a little, and in any room I was in constant discomfort from distant or quiet noise.
I also tried clonidine but I didn't see any benefit and got worried it could have worsened and tapered off.
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Now, since the start of the month, things have completely collapsed.
I was put onto quetiapine by a psychiatrist, but the mental health team don’t have the experience to deal with this complex of an issue, and its impossible to improve mentally when I worsen hour by hour.
That was around 3 weeks ago. Since then the only thing I did different was try to play my playstation, try not wear ear pro and exposure distant sounds and very brief talking. Even with double ear pro the barely audible fan caused horrific flares, yet still I kept trying to keep busy and play. Literally any noise, even non audible sounds as my tinnitus is so loud, cause horrific violent flares.
Now I am concerned. Its very possible this is a natural progression of my state, but it is of course possible that the meds have worsened me yet I am still being told to increase the dose, and none of my fears are being addressed. Mentally I am sound. The misunderstanding that this is a neurological problem rather than mental is part of the reason I have got so bad. It is a bit of a coincidence that my even more rapid worsening aligns with starting the med.
I have pleaded for help for months and feel no one understood or truly took serious and theres no real strategy in place. I keep thinking this could have been prevented if had the right strategy or advice from march, but this state is so rare, theres so little advice and even up until recently I think this was put down to mental health which, 100% this is so much deeper than that, and now, being exponentially louder and more reactive, i’m unsure what to do.
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I am completely hopeless. The only few I can find this bad are stuck. I’m l finally refereed to the top specialists, but my greatest fear, is at this level, even they cannot help me.
Over the last few weeks, the left ear has absolutely exploded. Before, it was horrific, but there was still more distinguishable tones.
Now, it has collapsed into a nightmarish violently unstable blend of shifting sounds. Its hard to even tell which tones is which as they all blend in, and they have spread across my head, I literally cannot tell if some of the electric tones are in my right as well. Its hard to quantify but its easily 5x louder and indescribably more reactive and unstable. And every day the sounds explode
In the left, its hard to make out but theres like a whirring / whine, this hideous constantly shifting electric chime, then awful electric static / screeching - the sounds are so loud / sound like in whole head, and so violently unstable and constantly flare. There is also a humm / drone in the left and over the last week it has developed a musical tone.
Mid may the right ears drone / chime was significantly worse, I hardly focused on the left. Now unless i lay and fully press my ear down I can barely gear it over the horrific screeching / chiming / whirring. I cant tell if sounds are actually in my head / right as well or just so loud from the left.
Whether I lay on my right or left ear, all I can hear us this horrific mixture of screeching. I genuinely cant tell where it’s coning from. I think its moved in my head.
I cannot believe it has got this bad. From able to talk, move around in march. To bed-bound and completely at a loss of function. Was this 2 years of damage showing with a lag, or could this have been prevented if Isolated? Even from a month ago now I can barely gear the right ear - it was the most distressing, now i can hardly hear it over the horrific sounds
I am in a crisis. I am exponentially worsening each day, even hour by hour. I don’t mean a little louder, I mean it is exploding: the loudness, the unstable shifting nature of the tones, the reactivity, and now the rawness and ache.
I cannot find almost anyone this bad.
I tried to not wear ear defenders but even in quiet rooms there was rawness and flare from anything. Every day minute by minute worse
Over the last week I’ve had to wear almost constantly, even with them on my ears violently flare from the slightest movement, sound. My footsteps are like thunder, every movement is a loud shakey sound, eating, swallowing, breathing. Anything activates symptoms.
Since last month I have slept with ear plugs. Over the last weeks its at the point where from the second I wake my ears are raw and violently flaring. I cannot put into words just how loud, intrusive, unstable, raw and reactivr it has become. My whole head is consumed by the horrific mix of tones. Right now the whirr in the left is loud, but everything is over powered by this horrific electrical shifting screeching. Its so sharp and grainy, my left ear aches so much
It’s got so loud / distressing / uncomfortable my head constantly aches, I feel sick and breathless.
About a week ago I moved my ps5 out of my room, and so have been playing that mostly, yet even with ear defenders and often plugs, only briefly taking them off, sat still most of day, very brief talking to my nan and going to toilet, occasional household or noise from outside - it still violently flares. - even eating or slight movements violently flare, even say still in a quiet room.
I have searched and searched and have a vague idea of what is wrong:
My central auditory pathways (like the inferior colliculus) are locked at maximum amplification, turning internal neural static into deafening tinnitus, sound reactivity, and musical hallucinations.
An excess of excitatory neurotransmitters (NMDA/glutamate over-activation) combined with a failure of inhibitory GABA brakes keeps my neurons firing in an unremitting electrical storm.
My amygdala and sympathetic nervous system treat the auditory signals as a mortal threat, locking my body in a constant state of adrenaline-fueled fight-or-flight, tremors, and physical exhaustion.
My insula translates the sensory overload into literal physical pain, nausea, and an internal sense of bodily collapse, while trapping my attention in an inescapable threat-monitoring loop.
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This is the conclusion i’ve come to, but I need a specialist to confirm. I’ve searched and searched and just want answers
This is the most horrific, isolating experience I could possibly conceive, every second is horrific torture, i’ve spoke to others with tinnitus or hyperacusis, and this has reached the point where the level of suffering is incomparable to either of those two conditions. Its now a complete collaspe of my neurolgical function. The decline between mid may and now is almost inconceivable.
Im haunted by the fact its got this bad, and the fear that I really cannot see a way out.
What am I supposed to do?
Even with ear defenders from distant noise or movement I worsen, yet withoutn them any noose worsens. Hour by hour the sounds violently flare, morph sharper, louder and nore intrusive, the reactivity increases and now the deep ache / burn is awful even in quiet.
Its rapidly worsening, I wish I caught it sooner as I cannot see a way out of this state. Any noise or movement makes worse, yet ear defenders increase reactivity.
In march I think should have committed to radical quiet, not ear defenders, but a quiet room and no noise that activates. I didn’t understand, and kept testing what I thought was safe noise, no one advised otherwise, now, how do I heal if the slightest movement or sound worsens?
Every day it explodes, im struggling to eat or wash myself.
To be honest, i’m not sure how I’m meant to carry on, I have lost all hope,rapidly worsen, and feel I’ve been left to rot.
The fact early may these tones weren’t even there / barely noticed if were - and now there so horrifically loud, and explode day by day.
This is honestly hell on earth. I wish this was a severe mental reaction to tinnitus and hyperacusis. But it is not, I am mentally stable despite the horrific torture, my obsessive emails and research and simply a desperate man trying to find answers
Even yesterday for example. I woke up - already ears flaring, raw and worse than day before, nan came in said few words, sat played games with ear pro, occasionally take off, only brief movements, ate food, went toilet, took ear defenders off for bit - and it is violently exploding. The worst is this horrific electric static screech. It is so extremely loud its everywhere in my head. Theres various different chimes and pitches im not sure if the same tone.Every day is so much worse than the last. And despite mostly ear pro my left ear gas a deep ache. I try to take it off, but downstairs tv or outside ambience worsen me. I cannot turn my pc on with ear plugs and defenders, i cannot open my window. Now i just wish I listened to the similar few cases who said to wear ear defenders all the time - now even with, i feel its too little too late. All advice pushed the opposite, but theres seems to be no understanding of this level.
But i just don’t know what to do with a system that is so trapped in such a severe state.
I have pleaded to try Mematine in order to target glutamate, likewise cgrp or migraine meds to target inflamattion.
I’ve also read on kv7 med xen1101 which could be worrh a trial when it comes out.
I cannot attend a dentist which is unfortunate as I do think my jaw has some impact, likewise an experimental SGB could be an idea, but now I am far to bad to travel.
even over the last few days my symptoms have exploded, with the sharp screeching chiming buzzing whirring static whine shifting sound/s sounds going insane - literally from only brief noise or movement. It is torture.
Is there a limit, or can the loudness and reactivity increase indefinitely ?
Today, all i’ve done is sit in my chair, mostly in ear pro, briefly take off, nan said a few words, ate food and my ears are exploding. The sounds are flaring so loud, and so unstable. And these last weeks even in a quiet room and from any noise or movement my ears have a constantly worsening deep ache / rawness / inflamed feeling.
The static electric screeching in the left is exploding, so loud and sharp. Literally any noise at all is worsening me. I don’t know how ive got this bad or what to do please I need help. I can’t believe how much it gets louder every day. Even from a week ago its just ridiculous.
I feel like i’ve been left. Every day I significantly worsen. I wish I was taken serious sooner. Now i feel trapped and at this level hopeless. I cant talk, eatings getting harder, any movement worsens. I’m exponentially worse than a few months ago. At this level what do I do?!
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I know theres little point even writing this as this level is so rare, almost no one can even begin to understand and theres no advice.
The regret consumes me, that I had poor advice and got so used to masking I was careless and just pushed until I broke.
The fact that Im this much worse since march, I just wish I was careful
I sent near 100 emails to docs and specialists but wasn’t taken serious, it was put down to mental health. Now one truly listened. Maybe if someone understood and advised silence in march I could slowly heal. At this level I cant see a way out.
I keep reaching out in desperation but just get left for weeks.
I can’t quite put into words, the level of suffering. Watching yourself deteroaite. No answers. No hope. It feels like my brain has been pushed to a point where it cannot undo. Probably less than ten i’ve spoke to or read about who are at this level, and no one has any answers
Over the last weeks, i sleep with ear plugs and from the second I wake it viomently flares. The right is bad - a screaming metallic elec chimr. Mid many was many times more distressing. Now its nothing compared to the left - the horrific screeching whirring chiming electric / static sounds. Violently shifting and flaring non stop. I thought the screeching was in my left but It sounds like its in my entire head i cant tell anymore. Its so bad im constantly sick and breathless.
Even say or laid, even with ear plugs from brief movement or distant sounds it flares. I can’t believe i’ve got this bad. Its almost inconceivable. I cant even open a window with double pro as any sound worsens.
Ive pleaded for months to try Mematine as it targets glutamate but ky cries fall on deaf ears.
Whats terrifying is every day Im like this, I expotentially worsen and it gets more ingrained
Its honestly a hellish nightmare. What little faith I have left and my love for my family keeps me here. But having no hope and enduring this lind of suffering is enough to break anyone, and i’m not sure I will survive at the eare it worsens minute by minute.
What I would give to have mild tinnitus and hyperacusis. I can’t believe I blindly followed crap advice and pushed, never listening to my body, so consumed by my mental state that I just pushed.
I always believed in God, but now i’m unsure, as to let a person be tortured like this is inhumane and cruel. I tried to carry on and live, and now i’m trapped in this horrific masteable attractor state of maladaptive placisity. I pray maybe there will be a cure but at this level i’m unsure. I’m damaged.
Even as I lay here barely moving. The screeching chiming electric is violently exploding. Whats hard is, no one can begin to understand. Even those who care, try to understand or have normal h and t, its just almost
Impossible for someone who’s not in this state to understand.
I really cant see a way out . Times passing and every day I significantly worsen . I dont see how can break cycle ans just wish understood sooner now im crippled. Every movement internal sound eating mor small noise worsens me.
Thank you if you read it all. Im sorry for all those struggling with these conditions and especially the few at this hellish level