u/Afraid_Departure_817

3 weeks waiting for mama kana think like a half, been stuck at coventry hub since 22nd with no updates.

Am i getting a certain letter in the post 😂 hope my beleafer makes it.

Im guessing if customs has got it will be flagged, but would it be overseas orders or all orders even through royal mail?

Might have to stick to usa from uk vendors if not arrives.

Ive tried so much lately, and i’ve come to the conclusion, eu flower is simply not worth it.

It is all grown via a controlled list of hemp whereas the ys market is unrestricted.

My beleafer beats every vendor i’be tried except for cbdboyz zushi (usa). Compared to the blue sherb it was level above. I was a bit disappointed by it tbh.

But not all us flower is equal. Many shops like cbd flower shop sell old batches or stores like greenbudz have more mid us.

So in my opinion, the only places worth getting from are cbdboyz, beleafer, h towm hemp (wanna try the french stuff) and zellow.

Trying to keep an eye out, zellow and cbdboyz sometimes stock flow gardens and cbdboyz sometimes lost oak.

What do you think?

I went a bit crazy and ordered loads from various vendors

So far been some standout strains and a fair few average / poor ones.

I’ve compiled a list of various strains i haven’t tried yet from different vendors which look like they have potential.

Let me know if any strains / vendors ive missed

Cbdboyz - blue sherb / zushi

Forbidden fruit / cheese - hemp hash

Cbdflowershop - bubbkegum runtz / after 8 / blue pancakes / platinum gas / ak47 / guava dawg

Greenbudz - wed cake / candey fumez / rs11

Solero cream / candy kush / super silver- bud bros

Cannatonic / sweet candy / blue kush - strain station

Purple kush / urkle / orange cookies / milkshake/ legendary og / cali haze - hemp elf

htown - super sour space candy

Originals - royal og

Biscotti / cookie monster fortune flavours

Clever botanics - Royal Gelato

Bubble gum - get hemp

Blue muffin - aunt marrys

Northern lights / gorilla glue / guava dawg - easy green

Loud co - legendary (bloody expensive)

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So far, its been a mixed bag

The first lot of bubba kush from orginals was amazing, the recent drops a bit of a let down

Budbros / hemp hash - pretty good - the swiss cheese and drizzle were standout to me, plutonium, legendary skunk also very nice

Hemp elf - good prices, tried a shit ton, id say 75% a bit average / weak - but 25% pretty good - from memory as an example the platinum og was lovely

Waiting on strain station / beleafer / mamakana

Cbdboyz dublin lava was incredible

Cbd flower shop lemon octane bit of a let down

My ocd went a bit crazy lol I wanna try them all.

Out of my list of potentials, have any of you tried any or would advise against any vendors or any strains or vendors missed?

Not sure about bud mother / highnsupply / calibudz

Also a bit dubious about easy green / aunt marys / get hemp / cbd flower shop / clever bot botnaics - can any one vouch for these

From what ive read and my experience so far the best quality is in order:

1 Beleafer
2 Cbdboyz / loudco
3 Ss / bud bros / hemp hash all on same level
4 greenbudz got decent feedback
5 originals amazing sometimes but sometimes hit miss
6 hemp elf good value but hit or miss / mamakana probs similar level to hemp elf
7 cbd flower shop - only tried one strain but let me down / another post said lacking although a separate one commended the bubblegum

And not to sure about fortune flavours / clever botanics // highnsupply / aunt marys / get hemp- out of these aunt marys seems best - seen a few mentions for highnsupply and not mant for cb or ff - get the feeling most just mid renamed eu greenhouse flowers / old batches / expensive.

Seen a negative post about cali buds, although reviews okay, likewise with budmother seen some bad feeback.

Zellow / astroclub very limited / nothing too interesting

Also 123/ collins cbd in IE and BeanNbud in Ne (limited selection) - tho from now i might avoid eu / usa imports as seems to be getting riskier.

Anyway, are there any strains you’d recommend from this list or elsewhere? What would your top 3 current picks be?

I have an insanely rare horrific condition, every day I worsen, there seems to be no hope or chance of healing, no one understands, every moment is horrific torture.

Even before this started I had years of trauma, stress and struggle.

People say “use to teach” or “not gods fault fallen world”

But if God is all powerful, and sees our stories before we’re even born and how the power to do anything, why would he choose to let people duffer, even when they call out.

I’m far from perfect, i’ve done and still do a lot of wrong, and I know perhaps none are worthy of gods salvation, but how can he let others have an easy life by comparison.

We all struggle, but what i’m enduring is the actual peak of human suffering, truly, I know we are all bias, but what im going through is hell on earth.

How is it fair that some sail through life whilst others are tortured and broken.

I know people say it only matters about the next life, but its easy to say while you still have joy and some peace in this world.

I am tired, broken, watching myself decay and most nights I cry and cry out to God.

I cannot feel his presence, i’m unsure if he’s even there or if he’s just not listening.

If he truly feels our pain and can feel what I feel and has left me here alone, how can that be love?

I’ve always believed, although there is a lot of doubt in my heart, but this last year I just feel so lost and alone.

How can God leave me here?

Why does every snapchat i make get banned for violating terms. It never says why. All i do is add all my friends and within 1-3 days im banned.

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:

1. 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.

2. 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.

3. 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.

4. 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

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.

-

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.

-

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:

1. 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.

2. 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.

3. 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.

4. 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.

-

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?!

-

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

For those that had a tmj splint which helped H / T, was it a stabilisation or repositioning splint ?

For those who got a TMJ splint which helped your tinnitus or hyperacusis , is it a stabilisation splint or repositioning splint that helped?

Trobalt

Was anyone about back when trobalt was a thing

For tinnitus it seemed to have mixed results and of course many side effects

Im wondering if anyone heard of it helping reactive tinnitus

Surely it would work better for reactive tinnitus vs regular ?

Was anyone about back when trobalt was a thing

For tinnitus it seemed to have mixed results and of course many side effects

Im wondering if anyone heard of it helping reactive tinnitus

Surely it would work better for reactive tinnitus vs regular ?

Understanding Clomipramine

Here is how Clomipramine might target the diverse layers of our conditions, including the nervous system and mental state and its use cases for reactive tinnitus, hyperacusis and noxacusis**

**Short overview**
**- noxacusis - highest likelyhood to help**
**- hyperacusis - moderate likelyhood to help**
**- severe reactive tinnitus - lowest likely hood to help and huge risk**

**The Auditory & Nervous System Hardware**

**Clomipramine is unique among antidepressants because it acts like a "shotgun" drug, hitting multiple receptors that directly govern your electrical firing.**

**Thalamic Gating (The Filter): By significantly boosting Serotonin, Clomi attempts to re-engage the Thalamus (the brain's switchboard). If your Subcallosal Gate has collapsed, Clomi acts as a chemical reinforcement to help the Thalamus filter out "junk" signals before they reach your conscious mind.**

**Sodium Channel Blockade (The Nerve Source): Clomi has properties similar to local anesthetics. It can stabilize the membranes of the Auditory Nerve and the Trigeminal Nerve. This is why it may help that "raw," aching feeling—it's physically quietening the "sparking" wires at the periphery.**

**Glutamate Damping (The Brakes): While XEN-1101 may eventually fix the Potassium channels, Clomi works on the other side by dampening Glutamate (the gas pedal). By lowering the excitatory "heat," it tries to slow down the Neural Synchrony that occurs when your neurons are locked in a firing loop.**

**2. The Limbic & Autonomic Impact (Mental State)**

**Catastrophic levels of tinnitus / hyperacusis create a biological feedback loop. The sound triggers the Amygdala (fear center), and the Amygdala physically tells the Auditory Cortex to turn up the gain.**

**The "Volume-Distress" Decoupler: Clomipramine is one of the most powerful anti-obsessional tools in medicine. It can physically "mute" the Amygdala’s alarm.**

**The Result: You may still hear the sound, but the Limbic System stops treating it as a life-threatening emergency. This lowers the "Systemic Voltage" and can stop the Kindling Effect (the daily worsening).**

**Vagal Tone and Fight-or-Flight: when in severe distress you are in a state of Sympathetic Dominance. Your body is constantly dumping adrenaline. Clomi can help shift the nervous system toward a more stable baseline, though it requires a careful "on-boarding" period to avoid initial heart-rate spikes.**

**3. The Risks: The "Paradoxical Surge"**
**For someone who’s system is already "redlining" at 11/10, the risks are strictly mechanical:**

**Adjustment Surge: During the first 7–14 days, the sudden increase in Serotonin can temporarily cause Hyper-Excitability. In a "broken gate" scenario, this can feel like the drilling is getting sharper before the stabilization kicks in. - some people, especially those in severe states have reported permanent worsening**

**Here is a concise summary of how Clomipramine (Clomi) might interact with the three main pillars of our auditory distress.**

**1. Noxacusis (Sound-Induced Pain)**
**• Target: The Trigeminal and Auditory nerves.
**• Mechanic: Acts as a sodium channel stabilizer (similar to a long-acting local anesthetic).
**• Evidence: Generally considered the most effective for pain; it physically desensitizes the "raw" sensation and prevents burning/stabbing triggers.**

**2. Loudness Hyperacusis (Collapsed Tolerance)**
**• Target: The Subcallosal Gate and Thalamus.**
**• Mechanic: Massive Serotonin boost to reinforce the brain's internal "Mute Button."** 
**• Evidence: Helps tighten the sensory filter, allowing the brain to better ignore background noise and increasing your overall "Tolerance Threshold."**

**3. Reactive Tinnitus (Volume Spikes)**
**• Target: The Brakes (Neural gain and inhibitory systems).**
**• Mechanic: Dampens Glutamate (the gas pedal) to slow down runaway electrical firing.**
**• Evidence: Serves as a Stabilizer. It doesn't silence the tone, but it can stop the "Kindling Effect" (where every sound makes the tinnitus permanently louder).**

**Critical Risk Summary**
**• The Adjustment Phase: High risk of a temporary "excitability spike" in the first 7–14 days.**

**• Protocol: Must start at ultra-low doses (5mg–10mg) to "sneak" it past the broken gate.**

**• The Bridge: It is a chemical stabilizer to buy time for the Summer 2026 XEN-1101 filing and 2027 tFUS protocols.**

**Fact vs theory?**

**The Hard Facts (Medical Science)**
**• FDA Status: Clomipramine is NOT FDA-approved for tinnitus or hyperacusis. It is approved for OCD. Use for auditory issues is "off-label."** 

**• Pharmacology: It is a proven Serotonin-Norepinephrine Reuptake Inhibitor (SNRI) and has known Sodium Channel blocking properties (similar to local anesthetics).**

**• Ototoxicity: In rare clinical cases, Clomipramine is documented as a cause of tinnitus (side effect). This makes it a "paradoxical" drug.** 

**• Neuropathic Pain: It is an established fact that TCAs (the drug class Clomi belongs to) are effective for Central Sensitization and nerve-related pain.**

**2. The Clinical Theories (Auditory Models)**

**• The "Gate" Theory: The idea that Clomi "tightens" a broken filter in the Subcallosal Area is a leading scientific model (Rauschecker’s Model), but it is not 100% proven that the drug fixes this specific hardware point.**

**• The "Brakes" Theory: The theory that Clomi dampens Glutamate to stop "Kindling" is a logical biological inference based on its chemistry, but there are no large-scale trials confirming it stops tinnitus spikes.**

**• Noxacusis Relief: The belief that Clomi is the "Gold Standard" for sound-induced pain is based on patient community reports and clinical observations, not a dedicated pharmaceutical "pain-hyperacusis" trial.**

**-**

Now, my dillema. I am in a state of neurological crisis, it feels as if the parts of my brain and auditory system that produce, filter and transport the electrical signals for tinnitus are malfunctioning. I’m suffering severe multi tonal, intrusive tinnitus, increasing reactivity which worsens daily, to the point i cant speak or shower, cannot focus and am in constant distress.

Many have suggested clomi, however almost none of those seem to be on this level of neurological collapse and the few I have spoke to who are tell me to avoid it. A system this fragile could be permanently worsened, I already attempted amitriplyine, and it may be a coincidence but after that period, also with continued stress and noise, that is when i seemed to “snap” and the reactivity increased, sound tolerance crashed and each day worsens.

At the end of the day, it is a gamble. It may help stabilise my system, but being in an already catastrophic state and not being able to function, it could offer relief, or it could push me over the edge

-

So what are your opinions on clomi? A lifesaver or a huge gamble ?

Let me know your thoughts, I’m in a tricky spot as my mind is falling apart and the idea that it might calm my system and help raise tolerance is appealing however the risk almost seems to outweigh the reward and theres almost no cases at this level of severity who have trialled it, and those who have it seems to worsen.

Here is how Clomipramine might target the diverse layers of our conditions, including the nervous system and mental state and its use cases for reactive tinnitus, hyperacusis and noxacusis

Short overview
- noxacusis - highest likelyhood to help
- hyperacusis - moderate likelyhood to help
- severe reactive tinnitus - lowest likely hood to help and huge risk

The Auditory & Nervous System Hardware

Clomipramine is unique among antidepressants because it acts like a "shotgun" drug, hitting multiple receptors that directly govern your electrical firing.

Thalamic Gating (The Filter): By significantly boosting Serotonin, Clomi attempts to re-engage the Thalamus (the brain's switchboard). If your Subcallosal Gate has collapsed, Clomi acts as a chemical reinforcement to help the Thalamus filter out "junk" signals before they reach your conscious mind.

Sodium Channel Blockade (The Nerve Source): Clomi has properties similar to local anesthetics. It can stabilize the membranes of the Auditory Nerve and the Trigeminal Nerve. This is why it may help that "raw," aching feeling—it's physically quietening the "sparking" wires at the periphery.

Glutamate Damping (The Brakes): While XEN-1101 may eventually fix the Potassium channels, Clomi works on the other side by dampening Glutamate (the gas pedal). By lowering the excitatory "heat," it tries to slow down the Neural Synchrony that occurs when your neurons are locked in a firing loop.

2. The Limbic & Autonomic Impact (Mental State)

Catastrophic levels of tinnitus / hyperacusis create a biological feedback loop. The sound triggers the Amygdala (fear center), and the Amygdala physically tells the Auditory Cortex to turn up the gain.

The "Volume-Distress" Decoupler: Clomipramine is one of the most powerful anti-obsessional tools in medicine. It can physically "mute" the Amygdala’s alarm.

The Result: You may still hear the sound, but the Limbic System stops treating it as a life-threatening emergency. This lowers the "Systemic Voltage" and can stop the Kindling Effect (the daily worsening).

Vagal Tone and Fight-or-Flight: when in severe distress you are in a state of Sympathetic Dominance. Your body is constantly dumping adrenaline. Clomi can help shift the nervous system toward a more stable baseline, though it requires a careful "on-boarding" period to avoid initial heart-rate spikes.

3. The Risks: The "Paradoxical Surge"
For someone who’s system is already "redlining" at 11/10, the risks are strictly mechanical:

Adjustment Surge: During the first 7–14 days, the sudden increase in Serotonin can temporarily cause Hyper-Excitability. In a "broken gate" scenario, this can feel like the drilling is getting sharper before the stabilization kicks in. - some people, especially those in severe states have reported permanent worsening

-

Here is a concise summary of how Clomipramine (Clomi) might interact with the three main pillars of our auditory distress.

1. Noxacusis (Sound-Induced Pain)
• Target: The Trigeminal and Auditory nerves.
• Mechanic: Acts as a sodium channel stabilizer (similar to a long-acting local anesthetic).
• Evidence: Generally considered the most effective for pain; it physically desensitizes the "raw" sensation and prevents burning/stabbing triggers.

2. Loudness Hyperacusis (Collapsed Tolerance)
• Target: The Subcallosal Gate and Thalamus.
• Mechanic: Massive Serotonin boost to reinforce the brain's internal "Mute Button." 
• Evidence: Helps tighten the sensory filter, allowing the brain to better ignore background noise and increasing your overall "Tolerance Threshold."

3. Reactive Tinnitus (Volume Spikes)
• Target: The Brakes (Neural gain and inhibitory systems).
• Mechanic: Dampens Glutamate (the gas pedal) to slow down runaway electrical firing.
• Evidence: Serves as a Stabilizer. It doesn't silence the tone, but it can stop the "Kindling Effect" (where every sound makes the tinnitus permanently louder).

Critical Risk Summary
• The Adjustment Phase: High risk of a temporary "excitability spike" in the first 7–14 days.

• Protocol: Must start at ultra-low doses (5mg–10mg) to "sneak" it past the broken gate.

• The Bridge: It is a chemical stabilizer to buy time for the Summer 2026 XEN-1101 filing and 2027 tFUS protocols.

-

Fact vs theory?

The Hard Facts (Medical Science)
• FDA Status: Clomipramine is NOT FDA-approved for tinnitus or hyperacusis. It is approved for OCD. Use for auditory issues is "off-label." 

• Pharmacology: It is a proven Serotonin-Norepinephrine Reuptake Inhibitor (SNRI) and has known Sodium Channel blocking properties (similar to local anesthetics).

• Ototoxicity: In rare clinical cases, Clomipramine is documented as a cause of tinnitus (side effect). This makes it a "paradoxical" drug. 

• Neuropathic Pain: It is an established fact that TCAs (the drug class Clomi belongs to) are effective for Central Sensitization and nerve-related pain.

2. The Clinical Theories (Auditory Models)

• The "Gate" Theory: The idea that Clomi "tightens" a broken filter in the Subcallosal Area is a leading scientific model (Rauschecker’s Model), but it is not 100% proven that the drug fixes this specific hardware point.

• The "Brakes" Theory: The theory that Clomi dampens Glutamate to stop "Kindling" is a logical biological inference based on its chemistry, but there are no large-scale trials confirming it stops tinnitus spikes.

• Noxacusis Relief: The belief that Clomi is the "Gold Standard" for sound-induced pain is based on patient community reports and clinical observations, not a dedicated pharmaceutical "pain-hyperacusis" trial.

-

Now, my dillema. I am in a state of neurological crisis, it feels as if the parts of my brain and auditory system that produce, filter and transport the electrical signals for tinnitus are malfunctioning. I’m suffering severe multi tonal, intrusive tinnitus, increasing reactivity which worsens daily, to the point i cant speak or shower, cannot focus and am in constant distress.

Many have suggested clomi, however almost none of those seem to be on this level of neurological collapse and the few I have spoke to tell me to avoid it. A system this fragile could be permanently worsened, I already attempted amitriplyine, and it may be a coincidence but after that period, also with continued stress and noise, that is when i seemed to “snap” and the reactivity increased, sound tolerance crashed and each day worsens.

At the end of the day, it is a gamble. It may help stabilise my system, but being in an already catastrophic state and not being able to function, it could offer relief, or it could push me over the edge

-

So what are your opinions on clomi? A lifesaver or a huge gamble ?

Let me know your thoughts, I’m in a tricky spot as my mind is falling apart and the idea that it might calm my system and help raise tolerance is appealing however the risk almost seems to outweigh the reward and theres almost no cases at this level of severity who have trialled it, and those who have it seems to worsen.

Introduction: The Current State (May 2026)

I am writing this from a state of Total Auditory System Collapse. I am no longer experiencing tinnitus / hyperacusis in the traditional sense; I am experiencing a high-voltage mechanical failure across four distinct layers of my neurological hardware. I am housebound, unable to shower, and flaring from the sound of my own breathing. This is a level of suffering that exists in a medical dark zone.

1. The History: How I Got Here
2. My journey to this collapse was built on years of "unseen" damage and following well-intentioned but disastrous medical advice.

The Foundation : 8 years of excessive headphone use, max-volume music, and loud environments. This created a hidden state of Cochlear Synaptopathy—the bridges between my ear and brain were snapping, but my brain was compensating by cranking the volume. Also past head injury, stress, trauma and drug use likely weakened my system.**

The Trigger (March 2024): Following a loud concert, a period of high stress, and another loud exposure, the tinnitus became permanent and hyperacusis began.

The Error: I followed the standard advice: "Don't use ear protection, don't avoid noise, just habituate." I pushed through more noise than any other case i can find anywhere. Every single day pushing through the distress, living in survival mode, constant headphones, driving a loud car, loud situations and countless noise traumas. Never without noise, never a minute to heal. I even used headphones to sleep and I used "Sound Therapy" devices non-stop for over a year, forcing sound into a system that was already redlining.

The Snap: By early 2026, after multiple acoustic traumas and other factors (MRI, fireworks, loud speakers, stress, meds etc ), my system lost its ability to reset. I reached a state of Excitotoxicity, where my neurons are now firing to the point of physical inflammation. I pushed until i broke.

2. The Research: A Map of the Failure
   My condition is the result of four specific hardware components breaking down simultaneously:

The Source (Peripheral Nerve Leaking): Years of trauma caused "snapped synapses." My auditory nerves are now damaged and "leaking" unauthorized electricity. This creates the static, buzzing, and raw electrical whirring.**

The Gate (Subcallosal Failure): The brain’s internal "mute button" (the Subcallosal Gate) has physically collapsed. Because this filter is gone, my brain treats every vibration—a bathroom fan or a distant voice—as a high-voltage emergency.**

The Brakes (Ion Channel Dysfunction): My Potassium (Kv7) Channels are stuck. These are the "reset switches" that tell a neuron to stop firing. Because they are leaky, my neurons fire at a million miles an hour in a permanent Kindling Loop.**

The Amplifier (Central Gain Runaway): My brain perceives the corrupted signal from my ears as "silence" and has turned the internal volume knob to 11/10.**

3. The Symptoms: The Hellish Orchestra

Right Ear: A hellish, shifting, unstable metallic grind and chime tones (Neural Synchrony).

Left Ear: A heavy, low-pitched drone (Central Gain).

Both Ears: Electric static, high-frequency drilling, and constant buzzing.

Physical Sensation: A "raw" burning in the face and ears (Trigeminal Nerve Inflammation) and extreme ear fullness (Cochlear Hydrops).

Extreme reactivity to any noise, no tolerance to sound, even from a whisper my tinnitus flares up and permanently stays louder. Noises seem loud and distressing.

4. Why I Am "Stuck" (The Threshold Trap)

I am trapped in Maladaptive Plasticity. Because my system is so hyper-excitable, even a "quiet room" is above my Tolerance Threshold. Every tiny flare acts as a blueprint that my brain immediately "learns" and adds to the permanent map. This is why it gets louder every single day—there is no floor.

5. The Potential Hope (The 2026/27 Exit Ramps)

Traditional "therapy" cannot fix a hardware failure. My hope lies in Biophysical Intervention:
XEN-1101 (The Grounding Wire): As of May 2026, Xenon Pharmaceuticals has confirmed a Q3 2026 NDA filing for Azetukalner. This is a highly selective Potassium (Kv7) Channel Opener. It is designed to physically "plug" the leaky ion channels that cause the screeching and grinding.
tFUS (The Gate Reset): Transcranial Focused Ultrasound is emerging as a way to reach deep into the Subcallosal Gate and manually force a reset. Private clinics are expected to begin "off-label" protocols for severe cases in 2027.**

Since I hit breaking point in mid feb and became mostly homebound, likely due noise exposure and potentially upping adhd meds, it has been a downwards spiral. even in march I followed medical advice and would: watch tv, phone audio, brief talking, low brown noise, fan on however after a period of continued noise and a few attempted walks and other exposures, it felt like something snapped in me (the “gate”?)

From mid march I lost all tolerance, I kept telling myself it’s because I’m stressed and fixated and the noise isn’t really louder. I kept following advice to maintain low exposure. I also tried amitriptyline but am unsure as to whether this was a factor.

Well, from then, just from brief noise, the tinnitus became louder, more tones, intrusive, physically unable to stop fixating, one tone is the most hellish shifting metallic screech its so intrusive and feels physical. over the last few weeks I have progressed to the point I am bed bound and can no longer shower, speak, tolerate noise even with protection.

Each day the tones grow significantly louder, my ears more sensitive, and I fear at such a level of damage / low tolerance its very difficult for the body to settle. I’m losing my mind, non stop distress and misery with no relief or hope. Since march the metallic ring has gone from any annoyance to 4x as loud, sharper, intrusive, screaming, the electric static is massively louder, I have new drone and whirr tones and each day they get louder and more tones.

Literally every second is hell, there are so many tones, so loud unstable and intrusive, I can no longer think, and any noise worsens me and each day it becomes harder. They’ve become so loud, screeching, screaming that its hard to even make out or tell which ear they’re coking from

I’ve searched and searched, looked at every forum, spoke to doctors, researched and I can only find a few similar cases anywhere online. Their advice is at this stage you must avoid all noise however i’m at the point even my quiet room any distant sounds activate symptom’s, and the tinnitus is so unbearable I cannot think, feel sick and breathless and makes my head physically ache and physical and mental distress. it’s awful regardless, but with ear pro its insane. Even with H and T communities there is only a tiny percent who understand this level of complete auditory, nervous system and neurological failure. This is a collapse in multiple areas of the brain and auditory system. Others I spoke to are either stuck or say it takes years of silence just to not worsen and maybe see slight improvement. It is pure terror.

I tried to stay hopefully, but the more I researched and the worse i got, it really seems like this level of severity is a medical black hole. Almost know one understands, general advice fails you and for someone not going through it, it’s almost an inconceivable level of suffering to understand. Any potential treatments are years away and no guarantee of helping.

I want to have hope but i truly feel like something in me is damaged or broken. I just wonder if I took a step back even in march I could have prevented this collapse or if my system was primed for collapse long before

So please, understand, that for most, hyperacusis and tinnitus are a mild annoyance, however it can turn into one of the most hellish experiences possible.

If you are a mild case, general exposure, avoiding loud noise and sound therapy may be helpful however for more serious cases and reactive tinnitus, it is a death sentence.

I kept going back to doctors, concerned that I was worsening and kept getting told, “reactive tinnitus isn’t real” “need to keep busy” “sort sleep” “not use ear pro” “headphones are fine” “normal noise can’t damage you” I was living in fight and flight, I wish i listened to my body and stopped.

I wasn’t taken seriously by anyone and so was careless, never used ear pro, had so many loud traumas without protection, kept pushing and using ear generators, loud car, headphones, loud places every day for 2 years even as extremely distressed and reactive reactive, until i broke.

The few things I’ve looked into, Tmj orthotic, surgery for ttts or hyperacusis are unlikely to help at this level and even if they could i cannot leave my house and clomi has been suggested however it carries a significant risk of worsening someone at this level of reactive t. For so long i was so focused on H i didn’t see the demon that was reactive tinnitus creeping up on me.

Please be careful with noise exposure, stress and meds, and please pray for me that somehow i might heal or a treatment might come along. I’m not sure how to survive, especially with the rate I’m worsening and the distress.

I’m only 23 and can’t see friends or family, go out and even in my prison i’m trapped in non stop distress, with unbearably loud awful tinnitus that worsens daily

Disclaimer - whilst all of my research is rooted in science and to me seems fairly likely, I cannot of course prove with certainty the terms mentioned are fully accurate to my state, and if anything, I pray that I am wrong as failure in multiple areas of the brain and being stuck is terrifying

Introduction: The Current State (May 2026)
I am writing this from a state of Total Auditory System Collapse. I am no longer experiencing tinnitus / hyperacusis in the traditional sense; I am experiencing a high-voltage mechanical failure across four distinct layers of my neurological hardware. I am housebound, unable to shower, and flaring from the sound of my own breathing. This is a level of suffering that exists in a medical dark zone.

1. The History: How I Got Here
My journey to this collapse was built on years of "unseen" damage and following well-intentioned but disastrous medical advice.

• The Foundation : 8 years of excessive headphone use, max-volume music, and loud environments. This created a hidden state of Cochlear Synaptopathy—the bridges between my ear and brain were snapping, but my brain was compensating by cranking the volume. Also past head injury, stress, trauma and drug use likely weakened my system.

• The Trigger (March 2024): Following a loud concert, a period of high stress, and another loud exposure, the tinnitus became permanent and hyperacusis began.

• The Error: I followed the standard advice: "Don't use ear protection, don't avoid noise, just habituate." I pushed through more noise than any other case i can find anywhere. Every single day pushing through the distress, living in survival mode, constant headphones, driving a loud car, loud situations and countless noise traumas. Never without noise, never a minute to heal. I even used headphones to sleep and I used "Sound Therapy" devices non-stop for over a year, forcing sound into a system that was already redlining.

• The Snap: By early 2026, after multiple acoustic traumas and other factors (MRI, fireworks, loud speakers, stress, meds etc ), my system lost its ability to reset. I reached a state of Excitotoxicity, where my neurons are now firing to the point of physical inflammation. I pushed until i broke.

2. The Research: A Map of the Failure
My condition is the result of four specific hardware components breaking down simultaneously:

• The Source (Peripheral Nerve Leaking): Years of trauma caused "snapped synapses." My auditory nerves are now damaged and "leaking" unauthorized electricity. This creates the static, buzzing, and raw electrical whirring.

• The Gate (Subcallosal Failure): The brain’s internal "mute button" (the Subcallosal Gate) has physically collapsed. Because this filter is gone, my brain treats every vibration—a bathroom fan or a distant voice—as a high-voltage emergency.

• The Brakes (Ion Channel Dysfunction): My Potassium (Kv7) Channels are stuck. These are the "reset switches" that tell a neuron to stop firing. Because they are leaky, my neurons fire at a million miles an hour in a permanent Kindling Loop.

• The Amplifier (Central Gain Runaway): My brain perceives the corrupted signal from my ears as "silence" and has turned the internal volume knob to 11/10.

3. The Symptoms: The Hellish Orchestra

• Right Ear: A hellish, shifting, unstable metallic grind and chime tones (Neural Synchrony).

• Left Ear: A heavy, low-pitched drone (Central Gain).

• Both Ears: Electric static, high-frequency drilling, and constant buzzing.

• Physical Sensation: A "raw" burning in the face and ears (Trigeminal Nerve Inflammation) and extreme ear fullness (Cochlear Hydrops).

Extreme reactivity to any noise, no tolerance to sound, even from a whisper my tinnitus flares up and permanently stays louder. Noises seem loud and distressing.

4. Why I Am "Stuck" (The Threshold Trap)

I am trapped in Maladaptive Plasticity. Because my system is so hyper-excitable, even a "quiet room" is above my Tolerance Threshold. Every tiny flare acts as a blueprint that my brain immediately "learns" and adds to the permanent map. This is why it gets louder every single day—there is no floor.

5. The Potential Hope (The 2026/27 Exit Ramps)

Traditional "therapy" cannot fix a hardware failure. My hope lies in Biophysical Intervention:
• XEN-1101 (The Grounding Wire): As of May 2026, Xenon Pharmaceuticals has confirmed a Q3 2026 NDA filing for Azetukalner. This is a highly selective Potassium (Kv7) Channel Opener. It is designed to physically "plug" the leaky ion channels that cause the screeching and grinding.
• tFUS (The Gate Reset): Transcranial Focused Ultrasound is emerging as a way to reach deep into the Subcallosal Gate and manually force a reset. Private clinics are expected to begin "off-label" protocols for severe cases in 2027.

-

Since I hit breaking point in mid feb and became mostly homebound, likely due noise exposure and potentially upping adhd meds, it has been a downwards spiral. even in march I followed medical advice and would: watch tv, phone audio, brief talking, low brown noise, fan on however after a period of continued noise and a few attempted walks and other exposures, it felt like something snapped in me (the “gate”?)

From mid march I lost all tolerance, I kept telling myself it’s because I’m stressed and fixated and the noise isn’t really louder. I kept following advice to maintain low exposure. I also tried amitriptyline but am unsure as to whether this was a factor.

Well, from then, just from brief noise, the tinnitus became louder, more tones, intrusive, physically unable to stop fixating, one tone is the most hellish shifting metallic screech its so intrusive and feels physical. over the last few weeks I have progressed to the point I am bed bound and can no longer shower, speak, tolerate noise even with protection.

Each day the tones grow significantly louder, my ears more sensitive, and I fear at such a level of damage / low tolerance its very difficult for the body to settle. I’m losing my mind, non stop distress and misery with no relief or hope. Since march the metallic ring has gone from any annoyance to 4x as loud, sharper, intrusive, screaming, the electric static is massively louder, I have new drone and whirr tones and each day they get louder and more tones.

Literally every second is hell, there are so many tones, so loud unstable and intrusive, I can no longer think, and any noise worsens me and each day it becomes harder. They’ve become so loud, screeching, screaming that its hard to even make out or tell which ear they’re coking from

I’ve searched and searched, looked at every forum, spoke to doctors, researched and I can only find a few similar cases anywhere online. Their advice is at this stage you must avoid all noise however i’m at the point even my quiet room any distant sounds activate symptom’s, and the tinnitus is so unbearable I cannot think, feel sick and breathless and makes my head physically ache and physical and mental distress. it’s awful regardless, but with ear pro its insane. Even with H and T communities there is only a tiny percent who understand this level of complete auditory, nervous system and neurological failure. This is a collapse in multiple areas of the brain and auditory system. Others I spoke to are either stuck or say it takes years of silence just to not worsen and maybe see slight improvement. It is pure terror.

I tried to stay hopefully, but the more I researched and the worse i got, it really seems like this level of severity is a medical black hole. Almost know one understands, general advice fails you and for someone not going through it, it’s almost an inconceivable level of suffering to understand. Any potential treatments are years away and no guarantee of helping.

I want to have hope but i truly feel like something in me is damaged or broken. I just wonder if I took a step back even in march I could have prevented this collapse or if my system was primed for collapse long before

So please, understand, that for most, hyperacusis and tinnitus are a mild annoyance, however it can turn into one of the most hellish experiences possible.

If you are a mild case, general exposure, avoiding loud noise and sound therapy may be helpful however for more serious cases and reactive tinnitus, it is a death sentence.

I kept going back to doctors, concerned that I was worsening and kept getting told, “reactive tinnitus isn’t real” “need to keep busy” “sort sleep” “not use ear pro” “headphones are fine” “normal noise can’t damage you” I was living in fight and flight, I wish i listened to my body and stopped.

I wasn’t taken seriously by anyone and so was careless, never used ear pro, had so many loud traumas without protection, kept pushing and using ear generators, loud car, headphones, loud places every day for 2 years even as extremely distressed and reactive reactive, until i broke.

The few things I’ve looked into, Tmj orthotic, surgery for ttts or hyperacusis are unlikely to help at this level and even if they could i cannot leave my house and clomi has been suggested however it carries a significant risk of worsening someone at this level of reactive t. For so long i was so focused on H i didn’t see the demon that was reactive tinnitus creeping up on me.

Please be careful with noise exposure, stress and meds, and please pray for me that somehow i might heal or a treatment might come along. I’m not sure how to survive, especially with the rate I’m worsening and the distress.

I’m only 23 and can’t see friends or family, go out and even in my prison i’m trapped in non stop distress, with unbearably loud awful tinnitus that worsens daily

please let me know if you have knowledge or understanding of very severe reactive tinnitus and hyperacusis - this level is rare and complex so I understand most will not have ant applicable advice

Since I first had mild fullness, distortion and then tinnitus around march 2024, likely from past excessive headphone use and then a loud concert. Also past head injury, ptsd and plenty of stress and substance use. through continued exposure it progressed to more severe hyperacusis though still mild at start of 2025

By 2025 the tinnitus was a bit worse but still not catastrophic. From there I saw doctors who gave me ear noise generators, told me to carry on, not wear ear protectors unless something very loud and should improve. Even said headphone use was fine

Anyway through 2025 I had countless noise exposures - significant exposure in Jan as went on holiday, definitely noticed tinnitus much louder

after that then in feb got driving and my car was pretty loud and i’d drive for hours using ear generators as a crutch never ear protection, then all evening at home would have headphones on, even music to sleep.

Also tried sertaline around this period but can’t remember if it worsened. And i tried a breathing method called wim hoff many times which i felt worsened me although may of been a coincidence

As the year progressed I carried on trying to live, hoping by pushing through like i’d been told i would adjusr

Went back to doctors numerous times and even though felt like was getting worse was made to feel normal noise can’t worsen me and basically just to carry on - continued to try live - around loud speakers, went out with friends, pubs - barely used ear plugs as relied on ear devices and fought through discomfort, every single day grit teeth and pushed through. So many loud exposures i pushed through.

I feel like such a fool. I didn’t understand tinnitus and hyperacusis. No one made me aware how bad it could become or how you need to he careful, i was led to believe just carrying on and getting used to it was the way forward and as no one took me serious i feel i didn’t take myself serious and pushed day in day out - non stop car, headphones, loud places and noise traumas. I wish i listened to my gut and stopped but tried to carry on.

By oct i remember i lost my sound devices and remember being very distressed. Without them the tinnitus was loud and ears felt very sensitive and i suppose reactive. Like a fool i got them replaced and went back to the same things . I was under such stress, sleeping poorly and just trying to survive. Also tried zopiclone around this time

By nov i remember just talking made ears pretty full and ache, hard to tell how reactive or loud t had become driving was difficult. Still carried on though. Then nov was exposed to fireworks and like a fool watched even without ear protector. I don’t know why i’d do something so stupid. Also then had exposure to more things - driving car, socialising, headphones, loud Christmas light show and market . Never had any time to heal.

Then December started adhd meds. By mid December was pretty bad way. Remember talking was hard, a lot of discomfort from most things. Even at this point didn’t truly understand how bad had become. Its like i was running on pure adrenaline for more than a year.

Then exposed more fireworks, had ear defenders on but still i can’t fathom why i would even take that risk. Its like i thought forcing normal things will somehow let me adjust

Also around dec jan had mri. Double pro but still couldn’t of done any good. Also saw more doctors my gp said “need a hobby or focus” despite me telling him literally any noise is worsening me. I saw my audiolgist who is a caring guy and tried to help but even in jan told me reactive t and nox weren’t really things, then did reflux test where played loud noise think that really fucked me up.

Anyway from jan to feb stopped driving much as every attempt worsened still a few times without ear defenders with people which was very foolish. Used ear generators less and mostly stopped headphones.

Had taken a step back but still occasionaly saw gf, in her car, some headphones to sleep, still use ear devices, tried sometimes go walks. By mid/late feb i tried higher dose of vynase for 3 days after only briefly trying lower dose few weeks before Barely slept, felt so wired and stiff jaw, literally made feel horrible. Hope that hadn’t permanently worsened me.

Tried baclofen and clonezpam after that for 1 week but no help. Then from early march started amitriplyine which didn’t help and made me worried worsened, tapering off now

After that i felt awful, even going for a walk with ear defenders was hard. The tinnitus was so loud and roaring, multi tonal and so sharp and raw, any noise caused ears to ache and feel full, and i suppose flare up. At this point stopped using ear generators. Even now didn’t full process just how bad had become. I wish i was careful.

From there pretty much housebound, tried to not use ear protection and through march mostly on phone with low vol, tv or brief talking. Attempted a few walks but always made worse even with double pro. Also ocd spiralled from stress every day write notes non stop research trying to understand

Not sure if was from the quiet noise, or from stress but just seem to of got worse. I don’t remember being this awful even in march. My ears are so much more reactive. Perhaps years of stress and noise exposure are all coming out

Silence or quiet is hell, theres so many tones, the most prominent are these unstable electric / static frequencies in my left and right as well as a lower pitch drone in left. But the worst is this horrendous unstable metallic ring / alarm / bell / grinding sound in my right. I’m not sure if its in my head but it seems so much louder than even a month ago. Its so loud i cant think, all day fixating. Cant relax. I’m unsure whether its really got louder maybe from quiet noise. I do remember feeling bit worse after period of watching tv and attempted walk but its hard to know is it the fixation on it, the meds i tried.

Also have ttts / mem - could related to ear fullness, and tmj issues

Perhaps it was loud before but as have got more sesntive / use ear defender more now cant tolerate any noise. Even talking, tv on 1, sat in garden. All flare me, the electric static gets louder / diff pitched and week by week seems more reactive and louder. Hard to tell if the metallic ring has really got that much louder but its unbearable, i can’t distract with anything just trapped with it. I’m so worried im damaged and that is baseline tone and so loud and distressing cant heal or habituate. Just want it to settle. Afraid am stuck.

Literally constantly being sick as under such distress and feel breathless. Even yesterday, had brief convo, had to take short phone call, trued play ps5 without ear defender and then accidentally dropped metal pot and just from any noise ears feel so raw and full, elec static flares much louder and metallic ring seemed so loud couldn’t sleep its like a drill or alarm and im so afraid its getting worse or unsure if its from the fixation. Was hell took hours to sleep such a state of panic and anxiety

I can’t do anything. Quiet is unbearable, any noise worsens me. I don’t know how i’ve got so bad and have reached out everywhere. Theres no real advice. This level is so rare it seems theres very few like this and most are stuck. Some advice months or years of silence but how when in quiet room im under such distress. Its so isolating. I’ve researched everything, looked everywhere and still no real anwsers. Theres no understanding and feels like my brain is stuck like this

Every day trapped, no stop distress, noise, discomfort. The metallic ring is unbearable.

Im so afraid pushing for 2 long has damaged my ears or sensitised my brain to the point it can no longer adjust and will just get worse. Its terrifying when even docotors are unsure and no one knows what to say. I tried quiet sound exposure but now even the quietest flares me. So trapped. I just wish i was careful and now so afraid stuck and could of healed if given advice. So afraid im stuck. So young and life feels ruined and just getting worse despite being careful, unsure how much is actually from noise or from such severe stress

Literally every second is a nightmare, even to sit in garden need ear defenders but the noise is insane. Feel so trapped in a cycle stress and worsening its just going on and on. So much time had passed, i miss my friends and family and am so afraid i wont heal. I just want to be free. Feel so suffocated just constantly bombarded by the noise and discomfort. My whole system is fried and just living is so difficult. Even cooking and showering are difficult. Even breathing. Can’t go out. Just trapped with this distress and no relief.

Im looking into everything: Tmj issues, clomi, ganglion block surgery for ttts etc but rn seems only time and quiet can help but not sure how survive like this or if will even get better as had such excessice exposure. Especially when seems worse daily. Truly is suffering beyond what humans were built to withstand.

Praying that TUS or XEN-1101 could offer relief but they are years away and no guarantee at all

Im trying to stay strong but rn feel so far gone, almost none at this level an fewer success stories. Such regret for pushing through. So much time is passing and feel so trapped. Just want hope. Rn no relief, constant stress and terrified seem to keep worsen, can’t do anything. All stop fixating, so intrusive cant even read a book in quiet. Every time i try anything seems worse

I just wish i could tolerate any noise and not fixate non stop idk how its got this reactive and rn feel trapped. Not sure if its the stress, from noise or something else but seems got so bad cant break cycle. Seems like my ears are damaged or my brain is stuck. Im so tired

If you read this far thank you, i know most people don’t even understand reactive t or this level of h as its so rare but if you have ant advice or hope i’d appreciate it. Feels like my mind is falling apart.

please let me know if you have knowledge or understanding of very severe reactive tinnitus and hyperacusis - this level is rare and complex so I understand most will not have ant applicable advice

Since I first had mild fullness, distortion and then tinnitus around march 2024, likely from past excessive headphone use and then a loud concert. Also past head injury, ptsd and plenty of stress and substance use. through continued exposure it progressed to more severe hyperacusis though still mild at start of 2025

By 2025 the tinnitus was a bit worse but still not catastrophic. From there I saw doctors who gave me ear noise generators, told me to carry on, not wear ear protectors unless something very loud and should improve. Even said headphone use was fine

Anyway through 2025 I had countless noise exposures - significant exposure in Jan as went on holiday, definitely noticed tinnitus much louder

after that then in feb got driving and my car was pretty loud and i’d drive for hours using ear generators as a crutch never ear protection, then all evening at home would have headphones on, even music to sleep.

Also tried sertaline around this period but can’t remember if it worsened. And i tried a breathing method called wim hoff many times which i felt worsened me although may of been a coincidence

As the year progressed I carried on trying to live, hoping by pushing through like i’d been told i would adjusr

Went back to doctors numerous times and even though felt like was getting worse was made to feel normal noise can’t worsen me and basically just to carry on - continued to try live - around loud speakers, went out with friends, pubs - barely used ear plugs as relied on ear devices and fought through discomfort, every single day grit teeth and pushed through. So many loud exposures i pushed through.

I feel like such a fool. I didn’t understand tinnitus and hyperacusis. No one made me aware how bad it could become or how you need to he careful, i was led to believe just carrying on and getting used to it was the way forward and as no one took me serious i feel i didn’t take myself serious and pushed day in day out - non stop car, headphones, loud places and noise traumas. I wish i listened to my gut and stopped but tried to carry on.

By oct i remember i lost my sound devices and remember being very distressed. Without them the tinnitus was loud and ears felt very sensitive and i suppose reactive. Like a fool i got them replaced and went back to the same things . I was under such stress, sleeping poorly and just trying to survive. Also tried zopiclone around this time

By nov i remember just talking made ears pretty full and ache, hard to tell how reactive or loud t had become driving was difficult. Still carried on though. Then nov was exposed to fireworks and like a fool watched even without ear protector. I don’t know why i’d do something so stupid. Also then had exposure to more things - driving car, socialising, headphones, loud Christmas light show and market . Never had any time to heal.

Then December started adhd meds. By mid December was pretty bad way. Remember talking was hard, a lot of discomfort from most things. Even at this point didn’t truly understand how bad had become. Its like i was running on pure adrenaline for more than a year.

Then exposed more fireworks, had ear defenders on but still i can’t fathom why i would even take that risk. Its like i thought forcing normal things will somehow let me adjust

Also around dec jan had mri. Double pro but still couldn’t of done any good. Also saw more doctors my gp said “need a hobby or focus” despite me telling him literally any noise is worsening me. I saw my audiolgist who is a caring guy and tried to help but even in jan told me reactive t and nox weren’t really things, then did reflux test where played loud noise think that really fucked me up.

Anyway from jan to feb stopped driving much as every attempt worsened still a few times without ear defenders with people which was very foolish. Used ear generators less and mostly stopped headphones.

Had taken a step back but still occasionaly saw gf, in her car, some headphones to sleep, still use ear devices, tried sometimes go walks. By mid/late feb i tried higher dose of vynase for 3 days after only briefly trying lower dose few weeks before Barely slept, felt so wired and stiff jaw, literally made feel horrible. Hope that hadn’t permanently worsened me.

Tried baclofen and clonezpam after that for 1 week but no help. Then from early march started amitriplyine which didn’t help and made me worried worsened, tapering off now

After that i felt awful, even going for a walk with ear defenders was hard. The tinnitus was so loud and roaring, multi tonal and so sharp and raw, any noise caused ears to ache and feel full, and i suppose flare up. At this point stopped using ear generators. Even now didn’t full process just how bad had become. I wish i was careful.

From there pretty much housebound, tried to not use ear protection and through march mostly on phone with low vol, tv or brief talking. Attempted a few walks but always made worse even with double pro. Also ocd spiralled from stress every day write notes non stop research trying to understand

Not sure if was from the quiet noise, or from stress but just seem to of got worse. I don’t remember being this awful even in march. My ears are so much more reactive. Perhaps years of stress and noise exposure are all coming out

Silence or quiet is hell, theres so many tones, the most prominent are these unstable electric / static frequencies in my left and right as well as a lower pitch drone in left. But the worst is this horrendous unstable metallic ring / alarm / bell / grinding sound in my right. I’m not sure if its in my head but it seems so much louder than even a month ago. Its so loud i cant think, all day fixating. Cant relax. I’m unsure whether its really got louder maybe from quiet noise. I do remember feeling bit worse after period of watching tv and attempted walk but its hard to know is it the fixation on it, the meds i tried.

Also have ttts / mem - could related to ear fullness, and tmj issues

Perhaps it was loud before but as have got more sesntive / use ear defender more now cant tolerate any noise. Even talking, tv on 1, sat in garden. All flare me, the electric static gets louder / diff pitched and week by week seems more reactive and louder. Hard to tell if the metallic ring has really got that much louder but its unbearable, i can’t distract with anything just trapped with it. I’m so worried im damaged and that is baseline tone and so loud and distressing cant heal or habituate. Just want it to settle. Afraid am stuck.

Literally constantly being sick as under such distress and feel breathless. Even yesterday, had brief convo, had to take short phone call, trued play ps5 without ear defender and then accidentally dropped metal pot and just from any noise ears feel so raw and full, elec static flares much louder and metallic ring seemed so loud couldn’t sleep its like a drill or alarm and im so afraid its getting worse or unsure if its from the fixation. Was hell took hours to sleep such a state of panic and anxiety

I can’t do anything. Quiet is unbearable, any noise worsens me. I don’t know how i’ve got so bad and have reached out everywhere. Theres no real advice. This level is so rare it seems theres very few like this and most are stuck. Some advice months or years of silence but how when in quiet room im under such distress. Its so isolating. I’ve researched everything, looked everywhere and still no real anwsers. Theres no understanding and feels like my brain is stuck like this

Every day trapped, no stop distress, noise, discomfort. The metallic ring is unbearable.

Im so afraid pushing for 2 long has damaged my ears or sensitised my brain to the point it can no longer adjust and will just get worse. Its terrifying when even docotors are unsure and no one knows what to say. I tried quiet sound exposure but now even the quietest flares me. So trapped. I just wish i was careful and now so afraid stuck and could of healed if given advice. So afraid im stuck. So young and life feels ruined and just getting worse despite being careful, unsure how much is actually from noise or from such severe stress

Literally every second is a nightmare, even to sit in garden need ear defenders but the noise is insane. Feel so trapped in a cycle stress and worsening its just going on and on. So much time had passed, i miss my friends and family and am so afraid i wont heal. I just want to be free. Feel so suffocated just constantly bombarded by the noise and discomfort. My whole system is fried and just living is so difficult. Even cooking and showering are difficult. Even breathing. Can’t go out. Just trapped with this distress and no relief.

Im looking into everything: Tmj issues, clomi, ganglion block surgery for ttts etc but rn seems only time and quiet can help but not sure how survive like this or if will even get better as had such excessice exposure. Especially when seems worse daily. Truly is suffering beyond what humans were built to withstand.

Praying that TUS or XEN-1101 could offer relief but they are years away and no guarantee at all

Im trying to stay strong but rn feel so far gone, almost none at this level an fewer success stories. Such regret for pushing through. So much time is passing and feel so trapped. Just want hope. Rn no relief, constant stress and terrified seem to keep worsen, can’t do anything. All stop fixating, so intrusive cant even read a book in quiet. Every time i try anything seems worse

I just wish i could tolerate any noise and not fixate non stop idk how its got this reactive and rn feel trapped. Not sure if its the stress, from noise or something else but seems got so bad cant break cycle. Seems like my ears are damaged or my brain is stuck. Im so tired

If you read this far thank you, i know most people don’t even understand reactive t or this level of h as its so rare but if you have ant advice or hope i’d appreciate it. Feels like my mind is falling apart.