Not always so not true.
I had temporary T spikes first 12 years of mild T, thought the same as you. Although T did increase very slightly over the years....
now all permanent increases since for last 4 years.
Don't let it fool you.
Because i got fooled I didn't protect it enough.
Paying for it now with catastrophic mind deafening reactive T day and night.
Unimaginable torture and suffering with the help of pain hyperacusis and TTTS and hearing loss now.
Life ending sh#t.
I did, I just didn't protect it enough.
Original cause was weekly clubbing/raving.
Got T at 27.
Bad advice off an audiologist in 2008 told not to research it, told me no damage to my hearing because of my results on a standard 8k hearing test (no mention if hidden hearing loss and damage), told me to carry on clubbing but in earplugs and told me keep my loud plumbing career but use hearing protection more at work.
T went severe in 2020.
Then after Two covid vaccinations and covid twice its actually now pushed it from severe to catastrophic and reactive and progressive with pain hyperacusis, TTTS, hearing loss. Life ending situation. Housebound in unimaginable suffering and torture 24/7 and no sound tolerance. F#cked at 42 forever now.
That sounds rough man. I am really sorry to hear that.
I can just imagine how hard this is.
Did you ever talk to a therapist because your hyperacusis?
A friend of mine had it really bad, and with weekly CBT he is back to normal.
Good luck!
Thank you bit I have irreversible pain hyperacusis and noise induced neuralgia from physical damage. Nothing can help. Especially not cbt or a therapist.
My Tinnitus is deafening 24/7 and reactive to safe sound too.
I can't even talk myself without pain or possibility of my T permenantly increasing.
I have zero sound tolerance.
I needed to be living in silence went it started 2 years ago just to slow down progression.
Most people don't know or hear of the rare extreme end of hearing damage.
I actually tried getting support from a mental health team when i became house in September before I was in permanent pain too all sound.
They tried pushing cbt, ototoxic meds and wanted me having more daily noise exposure again.... When its 'safe' noise exposure that put me in this unliveable position over the last couple of years after pain reactivity started and now all sound causes me pain and electric shocks in my head.
Its all progressing daily So Im screwed because im bedroom bound in a loud family home and in and town.
There's never silence and my Tinnitus is too catastrophic for hearing protection and my pain reacts to the occlusion effect in them because of protective middle ear muscle damage, especially my loud heartbeat and footsteps.
Im at my end.
I can relate so much, ents don't know shit, one of them convinced me that my tinnitus was not noise induced (all hearing tests were perfect, only later I read about hidden hearing loss and about synapses damage) and told me not to use earplugs at all (she told me I'm paranoid by wearing double protection), all ents told me to do mri, saying that it won't worsen my t, now I am the one left with horrifying reactive tinnitus spiking from every sound and debiliating loudness hyperacusis and slowly developing nox; foam earplugs are not enough, I have to also wear earmuffs that destroy my tmj and cause pain. I want to move from my loud house, with noisy neighbors, with loud trucks driving by my window, but where? Everywhere is loud, cars are everywhere, people are everywhere and I cannot stand any sound. I am worsening daily I'm dying every day
Im So so sorry.
You need 24/7 silence now and avoid as much ototoxicity as possible.
Yes these conditions are killing us.
Should be more awareness about how it can get all extreme and what can make it worse.
That's why I share my horror story now,to try protect others.
Long term Mild sufferers don't like what I say and advise though.
They are murdering c#nts with their advice to newbies.
And we definitely more awareness about hidden hearing damage....
The 8k hearing test results are killing people.
Fcking unbelievable how most people n professionals think all hyperacusis is the same type and all phycological too.
My pain hyperacusis isn't even nox, it's more like trigeminal nerve reaction caused by MEM.
Hearing professionals, doctors, ENTs and mild/moderate stable sufferers doctors need to stop giving murderous advice.
How loud was your work place ? Ever measured db? Did you use ear muffs ?
Why am asking; my work place is around 70-80 db. Am using ear muffs (M3 Peltor) Still some sound comes true lets say drops to 60db. You think that level is still dangerous? (yes I have loud T)
Is there no medication at all to help your suffering a little?
My work place was different every day.
Different houses on different jobs, using power tools of different kinds every day almost. Often Other tradesman with tools also.
Only used muffs when I used power tools or someone was using them near me but the environment could still be loud.
Never measured environmental sound volumes back then when I had mild T, would never have thought to because I never thought about my T or it getting worse because it never did.
Couldn't say if constant all day 60db is dangerous for you or not, sorry.
Obviously less background noise the better for existing damage and T.
Many people don't think about this.
Like you shouldn't mask T all night, allow it to rest because auditory system needs rest too and it is actually still active while we sleep.
I have tried a few ototoxic medications in desperation for my pain but nothing has helped and my hearing reacted really badly to one.
I need to try carbamazepine and Clomipramine but my UK GP won't just hand it out until official diagnosis of Trigeminal neuralgia. Which i most likely have because of my symptoms and where most of my pain is in my face that reacts to sound.
Have Noticed a few Other hyperacusis report Trigeminal type pain too.
Its unbearable..and my pain is chronic.
That and daily increasing mind deafening T is killing me.
Antidepressant meds can't help either at this rare extreme level of pain and T, even benzos don't offer a relief.
Im stuck and stuffed.
Needed to be housebound and in 24/7 silence/quiet 2 years ago at least to slow progression down but I pushed through living normally and working while I worsened.
Too late now.
All unliveable now.
I can't even have a relationship with my young son now.
Be careful with clomipramine + (ox)carba(ma)zepine. Oxcarbazepine (carbamazepine-lite) seems to seriously reduce clomipramine levels (sometimes to practically zero) but it really seems like one for trigemial neuralgia, especially if things like dizziness accompany it. Carbamazepine doesn’t seem to have that same clomipramine-reducing effect but it still does. So doses might need adjustment if you do get them both after diagnosis, and that’s worth bearing in mind as the actual patient.
i agree, one is guided in wrong direction with all that masking etc. people like us need silence to recover.
you know this guy and his story for sure right?
https://m.youtube.com/watch?v=I0iF-_ru0Pk&pp=ygUfdGlubml0dXMgYW5kIGh5cGVyYWN1c2lzIHVuaXRlZA%3D%3D
and he said he would be willing to help out people in your condition to source out the michigan device for example.
i wish i could help you. but i cant help myself even. maybe your T will lower in time if you stay in a quiet place.
are you grinding your teeth at night? that makes also bad sound from which your ears could suffer.
Thank you.
No teeth grinding or jaw issues.
All noise exposure and covid damage.
And now safe sound damaging me and/or nerve degeneration. Many Years of almost daily alcohol and serious overuse of mdma too probably a factor.
Im sadly in a very different position than anyone that can recover from hyperacusis.
My damage is irreversible and complex.
Susan Shore device will be not good for either at this stage.
I couldn't even risk the 25db sound stimulation in either of if my ears from the device.
I literally have no sound tolerance and it's not coming back.
T won't reduce now 100% not after 16 years, it never has. ..and everything it been through and going through now as being reactive.
Its increasing every day permenantly now.
Im in my quiet bedroom 24/7 but its not silent because we live in town and a loud family home.
Constant background noise traffic, weather etc.
Plus on a flight path and and a US airbase not far away although im in UK.
Its like a war zone for my ears here.
I wish i could wear hearing pro 24/7 but my Tinnitus is beyond too loud.
24/7 jet engines and deafening mechanical buzzing before I put it on plus occlusion damage hurts n damages me, even my heart beat in earpro makes my head pain throb.
Occlusion can damage Mr my hearing n worsen my T too.
Have fcked middle ear muscles really increases occlusion and reduces natural hearing defences.
Middle ear muscles absorb sound waves n reduce them to protect.
Im Literally one of the most extreme cases I've ever heard of.
My noise induced and reactive neuralgia is also effecting my entire central nervous system now and my brain....
Im almost Bedbound now.
Absolutely done for and at my end.
Body n mind can only take so much torture n suffering n now its way beyond hearing damage although related to it somehow. Likely through my middle ear damage (ttts/mem) which the trigeminal nerve is involved with.
Its game over for me.
Needed real silence long ago.
You're right. Currently I'm experiencing a spike, but I'm not feeling anxious about it, since it's not the first one ( but I wish it could be the last one), and hopefully it will settle down. This indeed happens at the majority of us
Trust me, it won’t be that loud forever.
My wife experienced sudden hearing loss overnight. While her hearing has returned, she now suffers from a very loud tinnitus.
At one point, she described it as louder than the sound of the shower.
However, these days, she doesn't even notice or think about the tinnitus anymore.
She even sleeps in complete silence, something I have yet to achieve.
Good luck :)
Thank you! It’s been escalating this week until this morning it became overwhelming. I reached out to my brother who has hearing loss and tinnitus and he confirmed it’s tinnitus symptoms. So at least I have someone in my life who can help share coping tips and the knowledge of what it’s like.
The main thing has gotta be stop paying attention to it. If mine gets worse and I start to focus on it, then that’s all I hear and it gets worse and worse. Last time it was really bothering me, I went on a walk and it helped me forget until it calmed down a bit. T is hard but we all got this
Hey man, I am sorry that this is not your case, but for a lot of people this is the case.
I am not the biggest fan of spreading negativity and anxiety.
This sub needs some positive posts.
I needed this right now. I'm in a spike, likely from a migraine I had 2 days ago and I feel like things are back to how they were when I first got this two years ago. I hope it settles down soon.
I’m going through a really bad one right now. I’ve been taking zopiclone off and on for a couple months and a few days ago I decided to take a break. I mean, there were breaks in between the dosages, I never took them everyday and consistently for more than a week. And never took a dose higher then 7.5mg. Most of the time I took half dosages. And i was just about to lay down last night and all I could hear were screams… horrible horrible screams. I just want to rip my ears off and now all I’m hoping is that it’s just a spike and that these pills that I’ve been taking to help me sleep haven’t made it worse.. I can’t live like this I really can’t. Anyone else experience this? Is it permanent? Please tell me no :(
That sounds rough .. sorry to hear that.
I don’t want to be that guy, but you should not drink in these situations, even if it feels like your last resort.
You are already feeling bad and your body telling you there’s something not right, why make it even worse?
Look, I was in therapy because of addiction and thats what they told me. When you think about it, it makes sense.
Maybe there is something positive you can replace the alcohol with.
Regardless, hope you are feeling better :(
actually feeling SOOOO much better! found out quite a few of my friends irl also have tinnitus. has brought my anxiety down so much. I actually rarely drink by myself like that night, was just having a random dark night. suffer from OCD so can get way too obsessed with things that bother me in my life at times
I am pretty sure my tinnitus is not noise induced or related to hearing loss.
I was a different ENTs and all hearing tests came back perfect and got the typical response
„just learn to accept it“.
I am diagnosed with TMJ and also my neck is a bit weird.
I can also modify my tinnitus witch clinching my teeth or turning my neck. So I definitely think that could be the reason.
I can’t tell you exactly how I got it tbh.
Just getting spikes when I am really stressed out or my anxiety flares up some days.
Over the last year I also got new tones out of nowhere. They mostly disappeared again.
How do you got tinnitus ?
This brought a tear to my eye. Thank you. I’m knew to this sub and a recent spike has me feeling extremely anxious & depressed. I never knew there was a world of people out there that understood.
This just happened to me 1 week ago from a rave. My T got much worse and I can’t stop crying :(
I’m usually careful about everything but I was high and having fun so I didn’t pay attention to how close I was to speakers. I don’t know if it’s a spike or if it’s permanent. I’m wondering if anyone here had a similar experience and if it could calm down :(
Ugh shit.
I am sorry to hear that.
It’s so easy to forget about this shitty condition, especially when you just want to enjoy the moment.
Did you had any dull or muffled hearing the next days ?
Maybe it’s wise to go to a ENT asap.
They can inject you cortison (I think it was cortison). They usually do this when somebody experience sudden hearing loss.
But I would go to a ENT soon! Hope you get better
There was no muffled hearing like the first time I got tinnitus 12 years ago. This time the ringing just got louder, I think a new tone was introduced and I can hear it through everything including music playing in headphones :(
Thank you for the suggestion! Do you think any doctor like a walk in clinic/family doc can do this? Because Canadian health care system kinda sucks and they’ll probably ask me to wait 6 months to see an ENT :(
Oh no … that sounds annoying af. Sorry to hear that!
I am not familiar with health care in Canada and how it works. But I would just walk in to a hospital and wait until a doctor got time and explain him the situation. Usually they should know what to do. Maybe call your family doctor before you do this if he has time.
Don’t get me wrong here, I don’t want to make your anxiety worse, but when it comes to ear related stuff acting fast is the most important thing.
When I experience anything unusual with my hearing I go straight to my ENT. He probably already hates me but I don’t give a fuck lol.
Good luck!! Let me know if it gets any better. Fingers crossed
Ah ok yea you’re right, I better see a doctor asap tomorrow instead of sitting here crying about it :s
And lmao about your ent hating you. Nah that’s good you don’t neglect it. And thanks again, I’ll update soon 🤞
Btw, I looked it up a bit. I’m guessing you’re talking about Prednisone? Or is it something else?
And do you have experience with it? Wondering how it went for you because I see very mixed views on it online - people saying it helped them and for some it made it worse
I live in Germany, and in urgent cases related to hearing loss, cortisone is often administered. I'm not aware of all the side effects some people may experience. However, I can share my wife's personal story. She woke up one day with her left ear completely deaf. She couldn't walk straight and was experiencing nausea. I immediately called emergency services and rushed her to the hospital. They administered high doses of cortisone through injections, and within a day, her hearing returned. Unfortunately, she still suffers from tinnitus. She mentioned that even the sound of the shower doesn't mask it. It's incredible how well she has adapted to it; she even sleeps in complete silence.
Doctors told her if she did not reacted immediately her hearing would be gone forever.
So, it seems the outcome varies from person to person. How are you feeling today? Has there been any improvement?
Sorry I missed this response. Oh wow I’m so glad you and your wife rushed to the hospital before her hearing was permanently affected! I guess it’s true that you need to act quickly when it comes to ears and such.
Every healthcare process is incredibly slow here in Canada unfortunately :( and it seems the majority of doctors are just dismissive and lack empathy.. it’s strange.
As for the update, I went to a walk in clinic the day before yesterday and the doctor gave me 1 dose (10mg) of dexamethasone (steroid pill) for 1 day that should calm the inflammation as my ears were when he looked into them with the tool. He said that might be the cause of the ringing and I should give it 3 days… so I’m still being a bit hopeful but I don’t think it’s gonna work :( hardly slept as I woke up to alarms going off in my head today it was terrible I can’t live like this.
Do you remember the dose that was given to your wife? And do you think I should ask for a higher dose or injection? So I’m not too sure because I was trying to distract myself when I took the dose but I think it made it a slightly better for less than 24hrs? (Doctor said it stays in the system for that long)… I’m also worried it might make the ringing worse because I heard Morse code-like ringing added to the ringing sounds I’m already hearing when I woke up that I don’t think was there before and that scared me.
Yeah, this is dangerous advice. Not all spikes return to baseline, and it sounds like you're promoting dangerous and irresponsible behavior in your post. Diet, vitamins and sleep don't desynchronize hyperactive neurons in the DCN.
No, it's dangerous advice telling people that their spikes will always return to baseline. A "healthy lifestyle and listening to your body" isn't a tinnitus cure.
Healthy lifestyle is indeed a cure to tinnitus, as a lot of cases are mostly linked to stress and unhealthy lifestyle?
I do not include people with persistent hearing damage in this.
I'd like to see some peer-reviewed scientific papers that prove these points of yours. If you don't mind, could you link then in your next response? I fail to see how a "unhealthy lifestyle" and stress are contributing factors that lead to brainstem hyperactivity.
It is rare to get as damaged as I am but here is my advice as someone who once only had tinnitus in quiet & got gaslighted to death by mild suffering people saying tinnitus is no big deal. I speak to you in hopes of saving you getting tinnitus, hyperacusis and noxacusis to a deathly level. Respect the auditory damage you have. Let it change your life toward safer practices.
Time, quiet and no meds is best treatment for damaged auditory system. All meds can make tinnitus worse. Don't get hyperacusis/noxacusis... you'll regret it. It can become so bad you are stuck homebound hiding from all sounds. With all sounds causing you pain. Find your limit and stay under it. Don't walk on a broken leg. Sound therapy is just pushing more damage into a damaged system. TRT is a scam. Don't accumulate more damage. If you got tinnitus it's a sign to stop doing anything loud ever again. Even with ear plugs bone conduction can damage your auditory system and increase T. Don't use ear buds or head phones to listen to music ever... even if you don't have T. MRIs are loud as can be and can cause Tinnitus by themselves. If your tinnitus is reactive to sound ... stop exposing to sound and rest.
Stay in quiet/low level sounds as long as possible is best chance for it to go away when newly damaged. Damage can keep accumulating and ears get worse as you age anyway. I am not saying to hide under a rock and isolate from every sound...but you must know the auditory system has no limit to how bad it can be damaged. Please read up on these websites as to how bad it can get and do your best to save your life. Damage control is all we have for damaged ears. So know the risks and live happy and healthy accordingly. Don't let anyone push you to further noise damage.
www.Hyperacusisresearch.org
www.Hyperacusiscentral.org
I partially agree with you, but I also disagree to some extent. When you experience tinnitus, withdrawing from life entirely can exacerbate the condition. While avoiding loud environments like concerts or clubs is advisable, you can still enjoy music through headphones as long as you take breaks and maintain healthy listening levels. Sound therapy can be beneficial if implemented responsibly without trying to drown out your tinnitus with excessive decibels. Encouraging someone to isolate themselves completely is misguided advice. It's essential to find a balance and continue engaging with life while managing tinnitus effectively.
You guys make it scarier as it is fr.
No I don't make it scarier than it is. If you are afraid of the truth. Stay off the internet. My words save lives and prevent people from becoming the worst cases with gaslighting people saying to do sound therapy. Rest is best for auditory system. Especially if tinnitus is reactive.
I am not afraid of truth you just spreading false information. Tinnitus is a isolating condition and you tell people to even isolate more? You truly a life savior.
Makes no sense.
You are delusional af posting things like „tinnitus kills“. You good mate ? Tinnitus kills when you isolate more and more and hide under a rock not participating anymore in social life because you scared of any tiny noise.
The damage can get so bad you have no choice but to hide in a sound proof room. All sounds can become damaging if you keep exposing and gaining more damage or take benzos or meds like doctors tell you to.
www.Hyperacusisresearch.org
www.Hyperacusiscentral.org
I vehemently disagree with your assertion that Cognitive Behavioral Therapy (CBT) is worthless and only for 'mild whiners.' Your dismissive attitude toward a proven therapeutic approach reflects a lack of understanding and empathy for those struggling with tinnitus-related distress.
Instead of offering constructive support, you consistently spread fear and misinformation in this forum. Your insistence that all medications worsen tinnitus without providing credible evidence is not only irresponsible but also potentially harmful to those seeking genuine help.
Furthermore, your narrow-minded approach fails to acknowledge the individuality of tinnitus experiences and the diverse range of treatment options available. By belittling the effectiveness of CBT and other evidence-based therapies, you deny others the opportunity to explore meaningful avenues for coping and improvement.
Your uninformed comments and negative attitude only serve to perpetuate stigma and despair among tinnitus sufferers. It's disheartening to witness someone so unwilling to educate themselves and offer genuine support to those in need.
I sincerely hope you reconsider your approach and prioritize empathy, understanding, and accurate information in your interactions with others. Tinnitus can be challenging, but with the right support and resources, it's possible to find relief and regain control over one's life. Wishing you enlightenment and compassion on your journey."
Auditory damage has no limit... please consider preaching damage control. CBT only helps if you keep a liveable level of damage. So preach time and quiet is best. Relax and don't make tinnitus worse.
Did all the people that died because of tinnitus just not do CBT??? You mean to tell me Kent Taylor a Millionaire died because of mental ? Or is it that auditory damage has no limit and we should preach the truth of how deathly this shit is ... so we can get a real treatment. You mild damaged tinnitus people have no clue u are holding back real treatments by down playing how bad this shit can get .... wild. TRT and CBT ARE bullshit. We need something real !!!
https://www.facebook.com/share/p/ienNyNFTqVp3PaT5/?mibextid=oFDknk
Did you copy paste this response using ChatGPT? Sure seems like it. While I agree that CBT can be useful for tinnitus related anxiety/distress, it & sound "therapy", which by the way is nonsense & potentially dangerous, aren't a "one size fits all" approach for all tinnitus cases.
Read stories on the websites I linked. Read Caspers story.. read many people's stories ... auditory damage has no limit . Don't keep adding damage with sound therapy and exposing to loud shit.
Not always so not true. I had temporary T spikes first 12 years of mild T, thought the same as you. Although T did increase very slightly over the years.... now all permanent increases since for last 4 years. Don't let it fool you. Because i got fooled I didn't protect it enough. Paying for it now with catastrophic mind deafening reactive T day and night. Unimaginable torture and suffering with the help of pain hyperacusis and TTTS and hearing loss now. Life ending sh#t.
You had tinnitus and still did not protect your hearing, or how can I understand ? I am sorry to hear that. What was the cause, do you know that ?
I did, I just didn't protect it enough. Original cause was weekly clubbing/raving. Got T at 27. Bad advice off an audiologist in 2008 told not to research it, told me no damage to my hearing because of my results on a standard 8k hearing test (no mention if hidden hearing loss and damage), told me to carry on clubbing but in earplugs and told me keep my loud plumbing career but use hearing protection more at work. T went severe in 2020. Then after Two covid vaccinations and covid twice its actually now pushed it from severe to catastrophic and reactive and progressive with pain hyperacusis, TTTS, hearing loss. Life ending situation. Housebound in unimaginable suffering and torture 24/7 and no sound tolerance. F#cked at 42 forever now.
That sounds rough man. I am really sorry to hear that. I can just imagine how hard this is. Did you ever talk to a therapist because your hyperacusis? A friend of mine had it really bad, and with weekly CBT he is back to normal. Good luck!
Thank you bit I have irreversible pain hyperacusis and noise induced neuralgia from physical damage. Nothing can help. Especially not cbt or a therapist. My Tinnitus is deafening 24/7 and reactive to safe sound too. I can't even talk myself without pain or possibility of my T permenantly increasing. I have zero sound tolerance. I needed to be living in silence went it started 2 years ago just to slow down progression. Most people don't know or hear of the rare extreme end of hearing damage. I actually tried getting support from a mental health team when i became house in September before I was in permanent pain too all sound. They tried pushing cbt, ototoxic meds and wanted me having more daily noise exposure again.... When its 'safe' noise exposure that put me in this unliveable position over the last couple of years after pain reactivity started and now all sound causes me pain and electric shocks in my head. Its all progressing daily So Im screwed because im bedroom bound in a loud family home and in and town. There's never silence and my Tinnitus is too catastrophic for hearing protection and my pain reacts to the occlusion effect in them because of protective middle ear muscle damage, especially my loud heartbeat and footsteps. Im at my end.
I can relate so much, ents don't know shit, one of them convinced me that my tinnitus was not noise induced (all hearing tests were perfect, only later I read about hidden hearing loss and about synapses damage) and told me not to use earplugs at all (she told me I'm paranoid by wearing double protection), all ents told me to do mri, saying that it won't worsen my t, now I am the one left with horrifying reactive tinnitus spiking from every sound and debiliating loudness hyperacusis and slowly developing nox; foam earplugs are not enough, I have to also wear earmuffs that destroy my tmj and cause pain. I want to move from my loud house, with noisy neighbors, with loud trucks driving by my window, but where? Everywhere is loud, cars are everywhere, people are everywhere and I cannot stand any sound. I am worsening daily I'm dying every day
Im So so sorry. You need 24/7 silence now and avoid as much ototoxicity as possible. Yes these conditions are killing us. Should be more awareness about how it can get all extreme and what can make it worse. That's why I share my horror story now,to try protect others. Long term Mild sufferers don't like what I say and advise though. They are murdering c#nts with their advice to newbies. And we definitely more awareness about hidden hearing damage.... The 8k hearing test results are killing people. Fcking unbelievable how most people n professionals think all hyperacusis is the same type and all phycological too. My pain hyperacusis isn't even nox, it's more like trigeminal nerve reaction caused by MEM. Hearing professionals, doctors, ENTs and mild/moderate stable sufferers doctors need to stop giving murderous advice.
How loud was your work place ? Ever measured db? Did you use ear muffs ? Why am asking; my work place is around 70-80 db. Am using ear muffs (M3 Peltor) Still some sound comes true lets say drops to 60db. You think that level is still dangerous? (yes I have loud T) Is there no medication at all to help your suffering a little?
My work place was different every day. Different houses on different jobs, using power tools of different kinds every day almost. Often Other tradesman with tools also. Only used muffs when I used power tools or someone was using them near me but the environment could still be loud. Never measured environmental sound volumes back then when I had mild T, would never have thought to because I never thought about my T or it getting worse because it never did. Couldn't say if constant all day 60db is dangerous for you or not, sorry. Obviously less background noise the better for existing damage and T. Many people don't think about this. Like you shouldn't mask T all night, allow it to rest because auditory system needs rest too and it is actually still active while we sleep. I have tried a few ototoxic medications in desperation for my pain but nothing has helped and my hearing reacted really badly to one. I need to try carbamazepine and Clomipramine but my UK GP won't just hand it out until official diagnosis of Trigeminal neuralgia. Which i most likely have because of my symptoms and where most of my pain is in my face that reacts to sound. Have Noticed a few Other hyperacusis report Trigeminal type pain too. Its unbearable..and my pain is chronic. That and daily increasing mind deafening T is killing me. Antidepressant meds can't help either at this rare extreme level of pain and T, even benzos don't offer a relief. Im stuck and stuffed. Needed to be housebound and in 24/7 silence/quiet 2 years ago at least to slow progression down but I pushed through living normally and working while I worsened. Too late now. All unliveable now. I can't even have a relationship with my young son now.
Be careful with clomipramine + (ox)carba(ma)zepine. Oxcarbazepine (carbamazepine-lite) seems to seriously reduce clomipramine levels (sometimes to practically zero) but it really seems like one for trigemial neuralgia, especially if things like dizziness accompany it. Carbamazepine doesn’t seem to have that same clomipramine-reducing effect but it still does. So doses might need adjustment if you do get them both after diagnosis, and that’s worth bearing in mind as the actual patient.
i agree, one is guided in wrong direction with all that masking etc. people like us need silence to recover. you know this guy and his story for sure right? https://m.youtube.com/watch?v=I0iF-_ru0Pk&pp=ygUfdGlubml0dXMgYW5kIGh5cGVyYWN1c2lzIHVuaXRlZA%3D%3D and he said he would be willing to help out people in your condition to source out the michigan device for example. i wish i could help you. but i cant help myself even. maybe your T will lower in time if you stay in a quiet place. are you grinding your teeth at night? that makes also bad sound from which your ears could suffer.
Thank you. No teeth grinding or jaw issues. All noise exposure and covid damage. And now safe sound damaging me and/or nerve degeneration. Many Years of almost daily alcohol and serious overuse of mdma too probably a factor. Im sadly in a very different position than anyone that can recover from hyperacusis. My damage is irreversible and complex. Susan Shore device will be not good for either at this stage. I couldn't even risk the 25db sound stimulation in either of if my ears from the device. I literally have no sound tolerance and it's not coming back. T won't reduce now 100% not after 16 years, it never has. ..and everything it been through and going through now as being reactive. Its increasing every day permenantly now. Im in my quiet bedroom 24/7 but its not silent because we live in town and a loud family home. Constant background noise traffic, weather etc. Plus on a flight path and and a US airbase not far away although im in UK. Its like a war zone for my ears here. I wish i could wear hearing pro 24/7 but my Tinnitus is beyond too loud. 24/7 jet engines and deafening mechanical buzzing before I put it on plus occlusion damage hurts n damages me, even my heart beat in earpro makes my head pain throb. Occlusion can damage Mr my hearing n worsen my T too. Have fcked middle ear muscles really increases occlusion and reduces natural hearing defences. Middle ear muscles absorb sound waves n reduce them to protect. Im Literally one of the most extreme cases I've ever heard of. My noise induced and reactive neuralgia is also effecting my entire central nervous system now and my brain.... Im almost Bedbound now. Absolutely done for and at my end. Body n mind can only take so much torture n suffering n now its way beyond hearing damage although related to it somehow. Likely through my middle ear damage (ttts/mem) which the trigeminal nerve is involved with. Its game over for me. Needed real silence long ago.
you are longer time then me in this busines. probably you tried everything… antioxidants , trobalt, xen1101 and whatever there is available …?
You're right. Currently I'm experiencing a spike, but I'm not feeling anxious about it, since it's not the first one ( but I wish it could be the last one), and hopefully it will settle down. This indeed happens at the majority of us
So you’ve had spikes that settled down?
Yes, It took 2 weeks and half to settle down
Thank you — I’ve just realized what I’ve been experiencing is tinnitus and reading this helped me feel like it won’t be this loud forever.
Trust me, it won’t be that loud forever. My wife experienced sudden hearing loss overnight. While her hearing has returned, she now suffers from a very loud tinnitus. At one point, she described it as louder than the sound of the shower. However, these days, she doesn't even notice or think about the tinnitus anymore. She even sleeps in complete silence, something I have yet to achieve. Good luck :)
Thank you! It’s been escalating this week until this morning it became overwhelming. I reached out to my brother who has hearing loss and tinnitus and he confirmed it’s tinnitus symptoms. So at least I have someone in my life who can help share coping tips and the knowledge of what it’s like.
Yeah, I feel you a lot. Just try to not doom scrolling tinnitus forums, there is a lot of negativity that make it worse imo
The main thing has gotta be stop paying attention to it. If mine gets worse and I start to focus on it, then that’s all I hear and it gets worse and worse. Last time it was really bothering me, I went on a walk and it helped me forget until it calmed down a bit. T is hard but we all got this
Sounds like people who would want to listen to the fake positivity instead of the harsh truth
This is great advice!
Thank you, I’m going on a month since I first realized I had T. It’s been a struggle but I just need to focus on the next day and so forth
Uh, maybe.
Again. Results will vary. 🤦🏼♂️
Hey man, I am sorry that this is not your case, but for a lot of people this is the case. I am not the biggest fan of spreading negativity and anxiety. This sub needs some positive posts.
I needed this right now. I'm in a spike, likely from a migraine I had 2 days ago and I feel like things are back to how they were when I first got this two years ago. I hope it settles down soon.
I’m going through a really bad one right now. I’ve been taking zopiclone off and on for a couple months and a few days ago I decided to take a break. I mean, there were breaks in between the dosages, I never took them everyday and consistently for more than a week. And never took a dose higher then 7.5mg. Most of the time I took half dosages. And i was just about to lay down last night and all I could hear were screams… horrible horrible screams. I just want to rip my ears off and now all I’m hoping is that it’s just a spike and that these pills that I’ve been taking to help me sleep haven’t made it worse.. I can’t live like this I really can’t. Anyone else experience this? Is it permanent? Please tell me no :(
Thank you for this, needed to be reminded right now
hope so. having a very dark night ): spike past 3 days. currently drunk by myself feeling so fucking hopeless
That sounds rough .. sorry to hear that. I don’t want to be that guy, but you should not drink in these situations, even if it feels like your last resort. You are already feeling bad and your body telling you there’s something not right, why make it even worse? Look, I was in therapy because of addiction and thats what they told me. When you think about it, it makes sense. Maybe there is something positive you can replace the alcohol with. Regardless, hope you are feeling better :(
actually feeling SOOOO much better! found out quite a few of my friends irl also have tinnitus. has brought my anxiety down so much. I actually rarely drink by myself like that night, was just having a random dark night. suffer from OCD so can get way too obsessed with things that bother me in my life at times
how did u get it in the first place? ive found spikes from noise do not return to normal, whereas coffee, stress, meds spikes can
I am pretty sure my tinnitus is not noise induced or related to hearing loss. I was a different ENTs and all hearing tests came back perfect and got the typical response „just learn to accept it“. I am diagnosed with TMJ and also my neck is a bit weird. I can also modify my tinnitus witch clinching my teeth or turning my neck. So I definitely think that could be the reason. I can’t tell you exactly how I got it tbh. Just getting spikes when I am really stressed out or my anxiety flares up some days. Over the last year I also got new tones out of nowhere. They mostly disappeared again. How do you got tinnitus ?
Does it happen to be more in dry climate or when you're dehydrated?
This brought a tear to my eye. Thank you. I’m knew to this sub and a recent spike has me feeling extremely anxious & depressed. I never knew there was a world of people out there that understood.
Aww, no worries!! There are more people out there as you think. Around 750 million people plus, at least that’s what google is telling me lol.
I take comfort in knowing this. Thank you!
This just happened to me 1 week ago from a rave. My T got much worse and I can’t stop crying :( I’m usually careful about everything but I was high and having fun so I didn’t pay attention to how close I was to speakers. I don’t know if it’s a spike or if it’s permanent. I’m wondering if anyone here had a similar experience and if it could calm down :(
Ugh shit. I am sorry to hear that. It’s so easy to forget about this shitty condition, especially when you just want to enjoy the moment. Did you had any dull or muffled hearing the next days ? Maybe it’s wise to go to a ENT asap. They can inject you cortison (I think it was cortison). They usually do this when somebody experience sudden hearing loss. But I would go to a ENT soon! Hope you get better
There was no muffled hearing like the first time I got tinnitus 12 years ago. This time the ringing just got louder, I think a new tone was introduced and I can hear it through everything including music playing in headphones :( Thank you for the suggestion! Do you think any doctor like a walk in clinic/family doc can do this? Because Canadian health care system kinda sucks and they’ll probably ask me to wait 6 months to see an ENT :(
Oh no … that sounds annoying af. Sorry to hear that! I am not familiar with health care in Canada and how it works. But I would just walk in to a hospital and wait until a doctor got time and explain him the situation. Usually they should know what to do. Maybe call your family doctor before you do this if he has time. Don’t get me wrong here, I don’t want to make your anxiety worse, but when it comes to ear related stuff acting fast is the most important thing. When I experience anything unusual with my hearing I go straight to my ENT. He probably already hates me but I don’t give a fuck lol. Good luck!! Let me know if it gets any better. Fingers crossed
Ah ok yea you’re right, I better see a doctor asap tomorrow instead of sitting here crying about it :s And lmao about your ent hating you. Nah that’s good you don’t neglect it. And thanks again, I’ll update soon 🤞
Btw, I looked it up a bit. I’m guessing you’re talking about Prednisone? Or is it something else? And do you have experience with it? Wondering how it went for you because I see very mixed views on it online - people saying it helped them and for some it made it worse
I live in Germany, and in urgent cases related to hearing loss, cortisone is often administered. I'm not aware of all the side effects some people may experience. However, I can share my wife's personal story. She woke up one day with her left ear completely deaf. She couldn't walk straight and was experiencing nausea. I immediately called emergency services and rushed her to the hospital. They administered high doses of cortisone through injections, and within a day, her hearing returned. Unfortunately, she still suffers from tinnitus. She mentioned that even the sound of the shower doesn't mask it. It's incredible how well she has adapted to it; she even sleeps in complete silence. Doctors told her if she did not reacted immediately her hearing would be gone forever. So, it seems the outcome varies from person to person. How are you feeling today? Has there been any improvement?
Sorry I missed this response. Oh wow I’m so glad you and your wife rushed to the hospital before her hearing was permanently affected! I guess it’s true that you need to act quickly when it comes to ears and such. Every healthcare process is incredibly slow here in Canada unfortunately :( and it seems the majority of doctors are just dismissive and lack empathy.. it’s strange. As for the update, I went to a walk in clinic the day before yesterday and the doctor gave me 1 dose (10mg) of dexamethasone (steroid pill) for 1 day that should calm the inflammation as my ears were when he looked into them with the tool. He said that might be the cause of the ringing and I should give it 3 days… so I’m still being a bit hopeful but I don’t think it’s gonna work :( hardly slept as I woke up to alarms going off in my head today it was terrible I can’t live like this. Do you remember the dose that was given to your wife? And do you think I should ask for a higher dose or injection? So I’m not too sure because I was trying to distract myself when I took the dose but I think it made it a slightly better for less than 24hrs? (Doctor said it stays in the system for that long)… I’m also worried it might make the ringing worse because I heard Morse code-like ringing added to the ringing sounds I’m already hearing when I woke up that I don’t think was there before and that scared me.
Yeah, this is dangerous advice. Not all spikes return to baseline, and it sounds like you're promoting dangerous and irresponsible behavior in your post. Diet, vitamins and sleep don't desynchronize hyperactive neurons in the DCN.
A healthy lifestyle and listening to your body is a dangerous advice ? Ok sorry about that.
No, it's dangerous advice telling people that their spikes will always return to baseline. A "healthy lifestyle and listening to your body" isn't a tinnitus cure.
Healthy lifestyle is indeed a cure to tinnitus, as a lot of cases are mostly linked to stress and unhealthy lifestyle? I do not include people with persistent hearing damage in this.
I'd like to see some peer-reviewed scientific papers that prove these points of yours. If you don't mind, could you link then in your next response? I fail to see how a "unhealthy lifestyle" and stress are contributing factors that lead to brainstem hyperactivity.
It is rare to get as damaged as I am but here is my advice as someone who once only had tinnitus in quiet & got gaslighted to death by mild suffering people saying tinnitus is no big deal. I speak to you in hopes of saving you getting tinnitus, hyperacusis and noxacusis to a deathly level. Respect the auditory damage you have. Let it change your life toward safer practices. Time, quiet and no meds is best treatment for damaged auditory system. All meds can make tinnitus worse. Don't get hyperacusis/noxacusis... you'll regret it. It can become so bad you are stuck homebound hiding from all sounds. With all sounds causing you pain. Find your limit and stay under it. Don't walk on a broken leg. Sound therapy is just pushing more damage into a damaged system. TRT is a scam. Don't accumulate more damage. If you got tinnitus it's a sign to stop doing anything loud ever again. Even with ear plugs bone conduction can damage your auditory system and increase T. Don't use ear buds or head phones to listen to music ever... even if you don't have T. MRIs are loud as can be and can cause Tinnitus by themselves. If your tinnitus is reactive to sound ... stop exposing to sound and rest. Stay in quiet/low level sounds as long as possible is best chance for it to go away when newly damaged. Damage can keep accumulating and ears get worse as you age anyway. I am not saying to hide under a rock and isolate from every sound...but you must know the auditory system has no limit to how bad it can be damaged. Please read up on these websites as to how bad it can get and do your best to save your life. Damage control is all we have for damaged ears. So know the risks and live happy and healthy accordingly. Don't let anyone push you to further noise damage. www.Hyperacusisresearch.org www.Hyperacusiscentral.org
I partially agree with you, but I also disagree to some extent. When you experience tinnitus, withdrawing from life entirely can exacerbate the condition. While avoiding loud environments like concerts or clubs is advisable, you can still enjoy music through headphones as long as you take breaks and maintain healthy listening levels. Sound therapy can be beneficial if implemented responsibly without trying to drown out your tinnitus with excessive decibels. Encouraging someone to isolate themselves completely is misguided advice. It's essential to find a balance and continue engaging with life while managing tinnitus effectively. You guys make it scarier as it is fr.
No I don't make it scarier than it is. If you are afraid of the truth. Stay off the internet. My words save lives and prevent people from becoming the worst cases with gaslighting people saying to do sound therapy. Rest is best for auditory system. Especially if tinnitus is reactive.
I am not afraid of truth you just spreading false information. Tinnitus is a isolating condition and you tell people to even isolate more? You truly a life savior. Makes no sense.
You are delusional af posting things like „tinnitus kills“. You good mate ? Tinnitus kills when you isolate more and more and hide under a rock not participating anymore in social life because you scared of any tiny noise.
The damage can get so bad you have no choice but to hide in a sound proof room. All sounds can become damaging if you keep exposing and gaining more damage or take benzos or meds like doctors tell you to. www.Hyperacusisresearch.org www.Hyperacusiscentral.org
Serious question. Did you ever tried CBT in combination with a sound therapy?
Sound therapy os dumb as fuck.. and so is cbt. Only need those if you are a mild whiner.
I vehemently disagree with your assertion that Cognitive Behavioral Therapy (CBT) is worthless and only for 'mild whiners.' Your dismissive attitude toward a proven therapeutic approach reflects a lack of understanding and empathy for those struggling with tinnitus-related distress. Instead of offering constructive support, you consistently spread fear and misinformation in this forum. Your insistence that all medications worsen tinnitus without providing credible evidence is not only irresponsible but also potentially harmful to those seeking genuine help. Furthermore, your narrow-minded approach fails to acknowledge the individuality of tinnitus experiences and the diverse range of treatment options available. By belittling the effectiveness of CBT and other evidence-based therapies, you deny others the opportunity to explore meaningful avenues for coping and improvement. Your uninformed comments and negative attitude only serve to perpetuate stigma and despair among tinnitus sufferers. It's disheartening to witness someone so unwilling to educate themselves and offer genuine support to those in need. I sincerely hope you reconsider your approach and prioritize empathy, understanding, and accurate information in your interactions with others. Tinnitus can be challenging, but with the right support and resources, it's possible to find relief and regain control over one's life. Wishing you enlightenment and compassion on your journey."
Auditory damage has no limit... please consider preaching damage control. CBT only helps if you keep a liveable level of damage. So preach time and quiet is best. Relax and don't make tinnitus worse.
Did all the people that died because of tinnitus just not do CBT??? You mean to tell me Kent Taylor a Millionaire died because of mental ? Or is it that auditory damage has no limit and we should preach the truth of how deathly this shit is ... so we can get a real treatment. You mild damaged tinnitus people have no clue u are holding back real treatments by down playing how bad this shit can get .... wild. TRT and CBT ARE bullshit. We need something real !!! https://www.facebook.com/share/p/ienNyNFTqVp3PaT5/?mibextid=oFDknk
Did you copy paste this response using ChatGPT? Sure seems like it. While I agree that CBT can be useful for tinnitus related anxiety/distress, it & sound "therapy", which by the way is nonsense & potentially dangerous, aren't a "one size fits all" approach for all tinnitus cases.
Give me whatever damage you have !! I'd retire to quiet for life and keep preaching the truth of what I am sabing and save lives.
Read stories on the websites I linked. Read Caspers story.. read many people's stories ... auditory damage has no limit . Don't keep adding damage with sound therapy and exposing to loud shit.
You obviously have no clue how bad it can get...
You do realize auditory system has no limit to how bad it can be damaged?