Catastrophic Reactive Tinnitus and Severe Hype... - Tinnitus UK

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Catastrophic Reactive Tinnitus and Severe Hyperacusis - My Experience

Thorian•

1 year ago•32 Replies

(Trigger warning - post contains references to euthanasia and tinnitus distress - Tinnitus UK moderator)

Hi all,

I want to share my story and also warn others.

I acquired Tinnitus after a loud rock concert in 2005. After that, my symptoms gradually eased. I went to hospital shortly after to attend an ENT appointment, and I specifically asked (I was willing to stop) if I should avoid music concerts from now on. The ENT doctor said "Absolutely not, you must not stop your life, continue to enjoy everything you can, just this time use earplugs".

So I tentatively followed this advice. The first few concerts, I got spikes, they went away...so I thought it was ok, until one cursed night in 2016, I went to another concert, and heard a flapping sound in my ear. I incorrectly assumed it was the speakers flapping as it was loud, but when I got home, i realised it was the soundwaves and the foam earplugs I had been using seemed defective and hadn't expanded enough in my ears. Anyway I got from then on, a much more persistent ring that I could now hear mostly all the time, but it was relatively quiet. From then on, I decided no more loud concerts for me. I now needed meds to sleep every night, my T at night was too loud.

I was still enjoying music at home and still able to play my electric guitar at low volume with no problem. Until I suffered a catastrophic accident with my ears by deciding to play guitar with a friend, who invited me to his home for a "jam". I wore earplugs, but I hadn't realised that two small amps on low volume were much more than my ears could take and I went from being a mild sufferer to a severe sufferer. Because when I woke up, I woke with full ears, and a much louder whooshing sound. My Tinnitus became reactive and started spiking with ordinary sounds, but worse, I inherited a new condition called Hyperacusis, where all sounds sound too loud, like they are amplified and some louder sounds cause physical pain. I needed earplugs outside from then on. Even then, I was successfully able to do many things, but unfortunately, many loud noises penetrated my earplugs and made me worse. These were:

1.A jackhammer I could not see behind a wall suddenly springing into life at the work car park as I walked to my car (I was wearing earplugs to drive, but still got further damage as it was so loud).

2. Chainsaws suddenly operating behind trees of a park I was walking around. A spike and then a permanent increase in my tinnitus.

3. A fire engine creeping up behind me at stopped traffic when I just removed my earplugs and operating it's siren next to my head, followed a few months later by an ambulance passing me near the park, siren blasting. Earplugs were in for the ambulance but it pierced them, I got a permanent increase in my tinnitus. I adapted to it eventually and still was able to do most things, but I found myself doing quieter things like walking in quiet places.

and the final castastrophic event:

4. Sat in my car in December 2022, driving back from the city centre, earplugs in, woolly hat over my ears, windows closed....the car in front decided to let a car out from a sideroad. The car he let out pulled sidelong to my car in the opposite lane, and when traffic started to move off, the driver of this car activated the loudest modified muffler I have heard in my life. My whole dashboard shook from the soundwaves, and so did my gear stick....I knew then, my ears could not survive this blast. And it was the final nail in the coffin.

From this point on, I now couldn't drive far or on noisy, fast roads and had to wear ear defenders over earplugs, my sound tolerance went massively down. My hyperacusis became far worse and I could no longer tolerate my office, I was moved to homeworking in Dec 2020. I am homeworking because three of my colleagues laughed in unison at a joke - I got a sudden stabbing red hot pain in my ears, then a spike in my Tinnitus. The pain was Hyperacusis related. Then everything started sounding even more loud. I could no longer speak without earplugs.

Two years on, i've had lots of other setbacks, fireworks exploding at my window when I was asleep a few nights before bonfire night, my cat knocking something heavy on the floor, a housemove and needing to drive, all have made me permanently worse. I haven't been able to listen to music for 4 years and watch tv for 2 years.

I'm now at the point where I am housebound and need to hire a carer. I cannot even vacuum and have to use lint rollers with ear protection on my carpet. I don't want to scare anyone, just educate. Please understand this one thing: Once the ears have been damaged, they are far easier to damage again. Please do not take any risks with these conditions. I am the point where I am considering ending my life because through these conditions and very bad luck, I have lost everything. I need strong hearing protection just to cook. I shower with earplugs and eat with bamboo cutlery. My sound tolerance is so low I can no longer go outside with earplugs, unless it is absolutely 100% quiet, and it never is, so I have to stay at home.

So my tale is another side of the coin. I did not "get better" with time, I got worse. TRT and white noise masking did not work for me, because of reactive tinnitus which got louder each time I tried. The loudness of my Tinnitus is head-piercing now and even if I could use sound, I would be unable to mask it. Each day is a day of survival. I can no longer fly anywhere or drive. I hide from sound, from normal life. 3 years ago I wrote to a swiss clinic as even then my conditions were very severe. When they said they would accept me, I could still just about fly with double hearing protection then. I chose in the end not to, to squeeze a few more years out of my life, I tried to be positive, thinking maybe I'd cope if it stayed the same. But I got worse and worse from setbacks outside. Now, I'm completely unable to fly due to both my Tinnitus and Hyperacusis worsening dramatically....so even if I decided to have euthanasia now I could not fly, the pain would be immense. Now I am running out of time, because there is no cure, no treatments work for me. Euthanasia in UK isn't legal so I'm left to suffer and get even more worse or make a tragic inevitable choice myself that I never wanted to make.

So please, if you start to develop "reactive" tinnitus (Tinnitus that spikes with sounds) or Hyperacusis, be very careful around sound. Try to avoid ending up like me. Sadly it will take thousands of suicides from these conditions until the medical professionals work harder on a cure. They say "Tinnitus isn't terminal" or "It gets better with time", well, I am here to remind them, that sometimes both of these things are not true. It has already killed many and may kill me too. But I would also like to raise awareness of Hyperacusis. This condition is even less understood than Tinnitus. The two together is a type of Hell i never knew could exist. Please be aware of it, read about it, it needs more exposure.

My sound tolerance must be around 25-30 dbs now, it is very poor, it has kept getting lower each time I've received a setback. I'm going to try a few more things such as try and get my CAT scan images of my head and send them to various doctors. If anyone knows good brain doctors who may be able to help, please let me know. I'm desperate and hoping they see something abnormal like Eagles syndrome or other and I can have some operation or hope.

Thank you for reading and sorry if it upsets some "mild" sufferers. My conditions have reached the extreme stage where they affect every aspect of my life and I just want to raise awareness of them, in case it helps anyone.

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Thorian

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32 Replies

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Deena61 year ago

Thorian I'm so sorry this has happened to you. Thank you for sharing your story. It's important that people know just how bad tinnitus can get. Hopefully, there will be effective treatments within the next few years. Again, thank you for raising awareness of what for some of us is a devastating and life changing condition.

Thorian• in reply toDeena61 year ago

I hope so, it might be too late for me but I hope it helps others. Prevention is more important than waiting for a cure that may not come anytime soon.

Beesmac1 year ago

Dear Thorian - thank you for posting and I’m so sorry to hear how Tinnitus has upset your life. You mention CAT scans but have you had an MRI? Are you getting regular assessments from any ENT Specialist or hospital? You have obviously changed your lifestyle to try and alleviate this dreadful predicament but it appears you need professional assistance urgently. I hope someone can come up with something quickly to help you. Very best wishes.

Thorian• in reply toBeesmac1 year ago

Hi Beesmac, Unfortunately I am absolutely unable to tolerate MRI, even with hearing protection. They are very loud and I know of people on other forums who acquired Tinnitus and Hyperacusis from having an MRI of their head for other conditions. I had my CAT scan two years ago, they told me it was quiet and not to worry, it wasn't, it was 76DB as I measured it on my phone. Amazes me to think that staff that this was quiet! I had to wear double ear protection (wearing my ear defenders upside down so they would not interfere with the scan) and luckily it was over quickly. I wouldn't even be able to tolerate a CAT scan now as I've worsened considerably since then and have even lower sound tolerance than before. Thanks for your message, I hope someone out there can help me or ask to see my scans at least. I tend to be one of the worst cases I know of, so I have a feeling something else might be going on. All the best.

Beesmac• in reply toThorian1 year ago

Hi Thorian - could you ask to be sedated for an MRI? There is no movement needed so would be beneficial to both yourself and radiologist.

Thorian• in reply toBeesmac1 year ago

Hi, this would not work as I would still get a huge spike and further damage, and end up in a much worse way than I am currently (though I must admit, I can't believe it can get much worse, but somehow it always does).

TinnitusUKPatPartner• in reply toThorian1 year ago

76 db, unfortunately, wouldn't be loud to most people - it would seem as a layperson that your baseline tolerance for sound has collapsed to a point where benign levels of sound are problematic for you.

I think what you might benefit from, potentially, is working with a hearing therapist who can over time re-establish a baseline level of sound comfort with you so that your life doesn't have to be compromised in the way that you describe it as being currently.

Thorian• in reply toTinnitusUKPat1 year ago

TinnitusUKPat, agree, to most people it probably isn't but over time they may be risking their hearing too working in that department at those sound levels. I see what you are saying about hearing therapist, I tried it myself with in ear maskers and at home. I tried watching movies on low volume, but got bad spikes from that too, even though subtitles were on and I could barely hear it. The problem is, the reactive T kicks in at attempts to try and normalise my hearing and I get even worse. I think I am compromised for the remainder of my life unfortunately, due to the way my symptoms are. But I'm hoping for a medical breakthrough of some kind. If I was mild, and had no reactive T, I am sure a hearing therapist could help me, but unfortunately I'm way past that point due to damage I have received. I seem to get worse by the month now.

daverussell1 year ago

Thank you for sharing your story. Sorry you're going through all this. Stay strong. Your story is important. However, I have a slightly different take on what I think you are saying. On the one hand you appear to say avoid situations, but I know on the other you are saying take precautions. Indeed the two go hand-in-hand. I cannot stress enough about taking precautions, but I would also state do not let it take over your life within good reason.

I hear my tinnitus above anything that isn't going to damage my ears further. Luckily, for the most part I've managed to habituate. In fact I'm sitting writing this in silence with Tinnitus screaming in my ears and I just let it pass.

I've struggled with Hyperacusis, more recently especially over the last year or so. My stress level then makes me less tolerant of the constant Tinnitus. This is especially at nighttime in bad, despite wearing a headband speaker,

It akl takes it's toll psychologically. But, whilst taking precautions and using ear protection to minimize further damage, the key for me is to fight back at what is my my body's natural instinct - FEAR. Indeed damage is not good, but with many things we can all look back in hindsight. However, intolerance is psychological and as we become fearful of sounds the more we avoid them and increasingly react to them and it's a vicious cycle.

I'm currently due to return to work as a teacher next week, with a phased return and with more adjustments following a second episode of amnesia. I believe it could be stress related (I'm awaiting more test to rule out anything serious). I generally find noise such as a classroom and coffee shops make me anxious. As if teaching isn't stressful enough, the stress from Tinnitus and Hyperacusis just pushed and pushed me. In recent months, I've had other symptoms such as dizziness, vertigo, nausea and eventually two episodes of amnesia where I couldn't remember the last week or so, and very little leading up to it led to just, well, almost tip over the edge.

So I've been off work for 4 weeks since my last episode of amnesia and I've had CT and an MRI scan that hasn't showed anything. I'm awaiting another MRI, but if that doesn't show anything I can hopefully put it down to stress. Unfortunately, there are many conditions it could be and ur maybe difficult to pinpoint with certainty. Especially as I have PTSD from childhood trauma anyway - stress doesn't help this eirhet. So providing they can rule out anything serious, I'm ready to keep fighting.

I think there is something to learn from my Habituation to tinnitus - childhood trauma has made me stronger too, but that's another sorry for another time.

I've had to drop to part time hours in the classroom and I may have to give up teaching altogether, but whatever I do there will be challenges. I can't and don't want to avoid coffee shops and the like.

I think it's difficult to determine whether our condition is almost inevitable. These noises we endure in modern life are unavoidable, albeit not a good thing. I've always had hearing problems since a child and having grommets fitted and the damage didn't help long term. Like yourself I attended a rock concert that I think had a big impact. I had ear plugs, but I didn't wear them until about halfway through. I've attended several gigs since (using ear protection) and whilst it has caused spikes. I don't think they had much of an impact - Having said that since my recent episodes I've canceled going to two gigs, but I will attend more as soon as I can to help me build up my tolerance.

I see my Neurologist, Dr Ahmed at Calderdale hospital in a weeks time. He's been fantastic. Unfortunately, NHS waiting times are not great.

Thorian• in reply todaverussell1 year ago

Hi Dave, thanks for sharing your story. The problem is, they told me the same, expose yourself to sound, build up tolerance, etc, but I personally cannot do that as my Tinnitus is very reactive, and spikes (gets louder for weeks) if I try. The Hyperacusis also gets worse and my sound decibel tolerance goes even lower. So I have to basically be in silence, or otherwise I get really bad piercing spikes, and my Tinnitus is already massively loud, so I absolutely try to avoid the spikes, which is difficult in itself. So I think it depends on if you have reactive T or not. If not, you should be fine, but take it easy and gradually build up. Yes I should see some sort of Neurologist. I might go private, as ENT were mostly useless in for me unfortunately. I don't think they see many people like me to be fair as I am at a very severe stage, and all the things they suggested to me could not work. But try. Noise in my case isn't an irrational fear, it actually pierces my earplugs which no longer protects me enough, and sets me back....so the phobia of sound is a very very real fear to me. I'm currently trying to move somewhere next to a quiet forest or park, so I can walk with earplugs somewhere quiet, where there is no noise of cars/construction/lawnmowers/DIY etc.....it's difficult but I have to try. Good luck with your appointment, let me know how things go.

daverussell• in reply toThorian1 year ago

If you don't mind me saying, whilst you need to make adjustments, like myself and getting away from the classroom environment, you will change your mindset.Have you tried CBT? Guided or self-help.

Ask yourself, are you more noise sensitive based on other factors. For example, if I can find a more arduous task that takes my mind off my surroundings and my tinnitus. I'm less likely to feel distracted by tinnitus and reactive to noise. When I'm planning lessons, I'll either sit at home with hearing aid maskers on or go to a coffee shop and play music through my noise cancelling headphones. But I'm very conscious about trying to drown out background noise and my Tinnitus. On occasions a playlist has stopped and I've not noticed.

Adjustments are fine, but by "running away" you could find yourself in a no-win situation. I live in the countryside and do everything I can for some background noise to distract from my tinnitus. I'm also aware sound therapy is probably doing more damage, so where I can I use the maskers on my hearing aids.

Don't let it completely take over. Moving to the countryside certainly has it's positives, just like any changes, don't let your condition be the one and only primary factor.

Thorian• in reply todaverussell1 year ago

Dave - No other factors, I simply have a poor tolerance of even basic, ordinary sounds. I avoid loud sounds....but if they happen I get a deep, burning pain in my ear, as well as spikes that last up to a month and even lower sound tolerance. I can do some normal things without ear protection like type on my keyboard now, but I can't do many "ordinary" things like open a food packet/butter spread lid, or clean my teeth without ear protection, or wash dishes/flush toilet or similar things considered ordinary. 2 years ago I could, but since the car muffler incident that was near my head, it's been a all downhill. 3 years ago they tried maskers with me but I got instant spikes. I wouldn't be able to tolerate them at all now. I am considering living rural. I would still need hearing protection outside (cannot tolerate birds or ambient sound either) but at least I could get some exercise and see something other than four walls. But moving, and driving has become an issue since November, and I am unable to drive without worsening my conditions. I don't recover fully anymore, I get a horrendous spike, which subsides a little, but louder T and worse H. I used to completely recover completely 4 years ago, now not sadly.

daverussell• in reply toThorian1 year ago

I get some pain in my ears, with noises at certain levels. It certainly isn't at the level you are experiencing

Has a specialist identified if anything else other than your pain receptors is causing the pain?

Have you been offered/tried (albeit a different level) of cognitive behavioral therapy?

You will find a way! It's not going to be easy. Ensure you weigh up any decisions you make and ensure it is going to have a positive effect. Speak to family and friends too.

Maybe I'm pointing out the obvious.

Thorian• in reply todaverussell1 year ago

No, but ENT said that noise trauma has destroyed my inner ear cilia and my auditory nerve must be damaged in some way too. They wrote I have severe neural "wear and tear". I think there's also something linked to my brain, because most tinnitus sufferers don't end up like me, so I believe it is the head injury i suffered when I was 20 contributing to it. My head was repeatedly kicked and it was hitting a wall behind me (I was attacked randomly by a gang years ago, 7 of them). I've lost most of my friends due to these conditions sadly....and my parents have passed away so it's just me trying to cope alone really, which is not easy and why I need to hire a carer now and then to run errands. I've tried CBT books that you have to write in, but must admit, these are more for clinical depression, which you can influence and change. I have co-morbid depression, depression based entirely on the conditions and how debilitating they are to me. My conditions are basically dictating my life, which causes the depression, not to mention the suffering which is at a very high level. It's not easy to change that, I am just taking one day at a time and have entered what I guess is basic survival mode. I do practice mindfulness, I'm grateful for every little goodthing I used to take for granted in the past, it helps, but only a little. I need some kind of medical miracle or medical intervention now. They need to work on a cure, or at least a med that makes the ringing go away.

daverussell• in reply toThorian1 year ago

Sorry about your circumstances. That's a lot to take on.

I suffered a head injury following a cycling accident a couple of years ago. I was knocked unconscious for about 10 minutes - luckily I was wearing a helmet that probably saved my life. I asked my neurologist recently if that could have caused some of my symptoms. I'm awaiting other scans as my recent symptoms all point to the Temporal Lobe of the brain.

I had counseling for PTSD but I wasn't ready. Though I picked up some useful tips that helped me later on. I did a online CBT course, but that didn't do it for me. But again I did pick up something useful, so maybe it did help. I can't say it was a waste of time and was definitely worth trying.

Not forgetting Tinnitus UK and people on this forum has been tremendously helpful. That includes asking advice but being able to share my own experiences/advice by helping others. Likewise, moving into education I feel I'm able to use my experience to help younger people. I was went down a very rebellious path as a child as well as being bought up by a narcissistic creep (paedophile s generally are - as I was told by the detective whom helped take my perpetrator to court). I've found both with my PTSD and with Tinnitus and Hyperacusis is to read and understand what is (or might be) going on - use reliable sources. Though i take antidepressants (I eventually found Sertraline works for me) that help suppress my anger/outbursts.

Regardless of what you do, speak to your doctor and get referred for more specialist treatment for trauma other than the daily struggle with Hyperacusis - I think this could well be having more of an impact than you think.

With our health services being pushed to breaking point, it's not easy and highly frustrating, but keep at them to get the support you need. You can't do this alone and any advise from the likes of us giving out advise with only our own experiences and no access to you medical records, whilst helpful, in situations such as yours, is just our opinion.

Whilst you have to accept your Tinnitus and Hyperacusis, by addressing your other issues maybe it will not dictate your life. Ironically the very act is showing it you not let it dictate your life and is a miracle in itself.

Much respect for everything you've endure d so far. I really think you can do this, but we can't do it alone!!! Going back to your original post, undoubtedly for many reading your story, you've helped others.

Stay strong and stay safe

daverussell• in reply toThorian1 year ago

I posted this separately on the back of and in addition to what I stated above.healthunlocked.com/tinnitus...

I've found understanding the mechanics of what is happening is helpful in the journey to living with our condition. I recognize your symptoms are very extreme, but will very likely point to anomalies in your nerve and pain receptors.

See this link to the course on hearing loss in the link to my post above.

Thorian• in reply todaverussell1 year ago

Thanks Dave. Unfortunately I cannot even leave the house at the moment and tolerate a doctor's surgery or hospital, let alone survive the journey there. I moved out of city to outskirts, it's a bit quieter, but unfortunately, you need to drive here as it's a small village with no amenities and since the beginning of December I've been unable to. So I am kind of stuck at home just lying low trying to recover a little. I did try to get my doctor to visit for home visit, they said they do not do them, which is odd. I've had counselling about 4 years ago, but she was unable to help me as they are trained to tackle clinical depression not co-morbid depression. But it was helpful to talk to someone face to face I have no social life now due to conditions, so having someone to talk to is important. Yes I hope my story helps someone, that's the main thing. I don't want anyone to end up like me, I am like this through following bad ENT advice, and several loud noise trauma accidents, and just very bad luck. I have a spike ontop of a spike at the moment, as my kitten knocked my deodorant off my bedside table in the night, and it fell with a loud crack on the laminate floor in my echoey bedroom. It will take me weeks to recover from a simple little thing like that....it's crazy when I think about it. I'm glad you're doing better. I take mirtazapine at night, but at such a low dose (5mg) as it works as a sleep aid then rather than an antidepressant. I do not sleep a wink otherwise as my T is too loud. I tried sertaline when I had very mild tinnitus....I had depression....it's laughable when I think about how I was depressed over very mild tinnitus compared to what I have now....but anyway, I found it elevated my tinnitus to dramatic piercing levels, so I had to stop taking it. That was about 16 years ago. I found mirtazapine through trial and error with meds, and needed a sleep aid. All the best

daverussell• in reply toThorian1 year ago

Can you request a home visit through the NHS, rather than your surgery?

Glad you have something that helps. I'm currently on 150mg as going higher or lower wasn't helpful. At least I just felt I'd end up in A&E with just a broken finger after punching the wall - I'm grateful it was only a finger.

Your story really goes to show how resilient we are, and can be. So despite the enquires you've have made, that you referred to in your OP and how you must have turned it around, I have the upmost respect for you.

I am genuinely concerned for you, so I do hope you can find someway for someone professional, with the correct resources and facilities, to help you. The problem with forums, even under the excellent moderation, we could potentially do more harm than good. Likewise Dr Google can be dangerous too.

Please do continue to share and keep in touch.

Newbie711 year ago

hello Thorian

You say that the Swiss clinic accepted you? I have wrote to them with the same conditions and they refused.

Thorian• in reply toNewbie711 year ago

Moderators note. Posts which link to services that offer end of life assistance go against the terms and conditions of Health Unlocked and will be removed.

Hi Newbie 71. I wrote to (redacted). Do not bother with (redacted), they only treat terminal patients. (redacted) are the best ones for dealing with our conditions, and they accept severe Tinnitus and Hyperacusis sufferers whose conditions are causing a massively reduced quality of life, (like mine). You must provide medical reports as evidence and I think it costs around £10,000.

TinnitusUKPatPartner• in reply toThorian1 year ago

Thorian, links to end of life assistance services are against the terms and conditions of Health Unlocked. If you want to share this information, it won't be possible to do that on this forum. I'm politely stating this now so that there is no confusion. Please don't make posts of this type again.

Thorian• in reply toTinnitusUKPat1 year ago

Hi, I was just trying to help somebody who told me they were refused, as i'd been accepted at one clinic. I didn't realise posts about euthanasia weren't allowed. Sorry for not understanding. I will not post such things again.

hhr21 year ago

Thorian, how awful for you. Tinnitus can be caused by so many things - some of which we'll never diagnose. You have obviously reacted to noise itself.

I agree with DaveRussell when he says that avoidance can make things worse. I know - for you it's like asking to walk into the fire to try to be part of life again.

When I was going through a particularly bad time with hyperacusis I avoided places. One summer while camping there were people beside us who played loud music and I was in a tailspin, always worried that when the music was off, soon it would be on again. I couldn't even enjoy the quiet times. We moved to another park but I knew I couldn't keep running all the time and let fear of what might hurt my ears run my life. (Note here: yes, the bad PT developed after a COVID vaccine but I had had low grade T off and on for years but it was quite manageable).

Your case sounds extreme - but can you start taking it in little bits - try fifteen minutes walking outside? Add a few minutes every day? One thing that I have found quite different is that I CANNOT wear earplugs because they just amplify the tinnitus in my head. Yours sounds directly related to your ears - have you had an MRI?

Years ago I had custom earplugs made for me. A molten type of plastic was actually poured into my ear that formed a tight fit. This was done at a hearing clinic in a hospital. Probably even better ways of doing that today and maybe that might be helpful for you.

Thorian• in reply tohhr21 year ago

Hi, My case is extreme unfortunately, I have to wear earplugs to even step outside or speak. I stopped going for walks because when I wear earplugs they amplify my already severely loud tinnitus to massive levels, what I call "suidical loud" and it's just not comfortable to be outside for long and listen to that, as when I come back inside, that's all i hear, the louder ring. Also going outside I risk even more damage from a sudden loud noise I cannot avoid. (There are no quiet places to walk here unfortunately, though I could try going early or late in the day). I have needed earplugs for 4 years, but needed ear defenders as well for the last two, when driving, etc but now I cannot drive at all as the sound pierces even my earplugs and ear defenders even though my car is quite quiet. It must be the road noise/vibrations getting through. My hearing protection used to work better, but now more and more sound gets through and they no longer protect me enough. Inside, I also hear distant trains and planes and other sounds I could not hear before at home. They did look into my ears with a camera and said the bits that should be red and fleshy are all dead and grey, so I think it's my ears, just too much noise trauma over the years, but I also believe there's something going on with my brain, as I had a severe head injury years before I got these conditions and had concussion and was in hospital for a week. (I was randomly attacked by a group of thugs one night walking home). I believe that played a part too, and it wasn't just the music concerts. That's my belief anyway as I know of many people who got head injuries on forums and some of them immediately got T and H. It must have made me extra susceptible to the conditions or something. This is why I want to try a doctor or neurologist specialising in the brain as maybe they can spot something in my scans.

hhr21 year ago

just a quick reply cause it's 2:00 a.m. where I live ... have you looked into Neurointerventional radiology?

Thorian• in reply tohhr21 year ago

hhr No I haven't, I will look into this. I'm ready to try anything as life is becoming extremely difficult. I will investigate it, thanks.

feistyMiss1 year ago

Dear Thorian I am so sorry to hear of your situation. I have tinnitus which stays mainly the same tones but my partner has severe reactive tinnitus with severe hypercusis. Up until reading your post I thought my boyfriend was one of the worst cases there could be so I completely understand everything you have said.His hypercusis got worse and worse over trying to lead a normal life until he ended up housebound for over 2 years and I had to do everything for him. No showering (still doesn't) uses flannel no hovering just a eubank and brush I hand washed in the bath list goes on. No TV computer internet etc he just read books all day and some of the night. Couldn't talk much or walk much vibrations would hurt his ears. He wanted to see a neurologist but couldn't do the car journey .

No doctor understood and he had no one. We were completely on our own

4 years later he goes very short distances in car and things have improved slightly. We are hoping for further improvement with time. We never give up hope and I would urge you to do the same that given time your ears will gradually accept some sounds

Thorian• in reply tofeistyMiss1 year ago

Hi feistyMiss, yes this sounds exactly like my life. I can just about shower, but I wear strong, custom moulded earplugs, which are a complete seal. However, even that is getting challenging because the shower makes a humming sound which is more problematic than the water sounds. Does your boyfriend wear earplugs and ear defenders in the car? I have to wear both, but the last time I drove (30 mins each way) to the dentist on mostly slow roads, I got worse. I think I got worse because on the way back i accidentally took the wrong country road back which meant I came out on a fast A road (60mph). I was only on it for less than 2 minutes, but the damage was done, I could literally feel my ears saying "no, this is too much". It was really rough bitumen...I hate british roads. They use all the rough stuff, even though it's not cheaper than the smooth tar, simply because they wanted people to drive slower, but it doesn't work, and everyone's journey is noisy, even if you have a quiet car.....it's hell for me and when i could drive I had to avoid these roads. I can't read as my T is too loud (comes over everything), well, I can't read books, I keep losing concentration and I'm endlessly re-reading paragraphs, so I gave up. I can read short articles and things on the web, and i can write, thankfully. I noticed my spelling getting worse and sometimes I'm substituting the wrong words...I believe it's related to my conditions. I also get worse from walking and vibrations of my steps.....I had to buy timberland boots which are very soft to walk with, but the problem now is I cannot even go outside here. How did your boyfriend improve? The worst thing is, I thought Tinnitus has a limit....but there is no limit seemingly, it can climb ridiculously loud. Thanks I will hope I improve. I bought a kitten as a support animal recently, my friend collected her for me. But I made a mistake as she is rambunctious and has also made me worse by knocking over various things that made really loud crashes and bangs....but overall, she does help me cope, i just hope she hasn't worsened me permanently, because it feels like she has. I am staying in the quiet for a while and see how it goes.

feistyMiss• in reply toThorian1 year ago

Hi ThorianMy boyfriend has only recently started going out in car.When he first developed hypercusis he kept traveling and tried to use ear defenders but with each trip got worse and worse.He also says using ear plugs and defenders make the tinnitus go up to intolerable levels

After spending 2 years housebound with as little sound as possible he has now 6 months later got to the stage of he can travel without any protection up to 5miles not going over 30 miles an hour.He is unwilling to push it and is grateful for the improvement.

If my boyfriend can improve Thorian anyone can believe me l completely resonate with the survival mode you talk about

The only advice I can give is to give your ears a break from as much sound as you can to let them heal even if that means putting your life on hold for as long as you can then start very slowly reintroducing sound. Please don't give up if my boyfriend can improve slowly so can you

Thorian• in reply tofeistyMiss1 year ago

Hi feistyMiss I will try it. Unfortunately in October i moved to a house with thin walls, and sometimes the neighbour closes or slams her drawers loudly, and so it's difficult to get peace here. I also got bored a week ago and watched a film on my computer for 4 hours, and even low with subtitles, I got a massive setback. Then last night my kitten (who i bought as a support animal) knocked my deodorant off my bedside table, and it landed with a loud crack on the laminate floor in my echoey bedroom, and so I have a really bad spike onto of a spike now. I'm exhausted from it all. But yes, going to try and stay in the quiet now for as long as a can. In hindsight I probably should have got an older cat, I had no idea a kitten could be so crazy and loud, she's active and into everything. She's given me several bad spikes over the last few months, and I don't think I have really recovered sadly. The worst ones was when she knocked my alumumium airer over, behind me, and so I didn't see it happening, just heard the sound of 1000 glasses smashing and got a bad shock and spike. Then a month later, she knocked my heavy Peltor X5a ear defenders off my bedroom drawers when I was asleep. She'd decided to sleep there in the night and stretched out. It made a massive loud bang as my room is echoey. Both those two things have really messed me up. Add to that, the old neighbour next door is weird and keeps making banging sounds. I'm not sure if I can stand another 2 years in this echoey house but no idea how I can move again at the moment when I cannot even drive.

feistyMiss• in reply toThorian1 year ago

We understand the computer thing. In the beginning if my partner went on to a website as computer sent signal he would get a very high pitched sound that would disappear into his head and cause stinging and vibrations then the baseline tinnitus would go upWe too have laminate flooring throughout and can do understand what you mean when things get dropped. When a pen got dropped it would be trauma. I had to stop wearing my slippers he couldn't take the sound

Light switches keep having to be replaced because when we use them we have to avoid the click so keep breaking them

You and my partner have so many of the same struggles even down to a cat.

We took on a neighbours cat when they moved 3weeks later he damaged his ears. Unfortunately when you stroke it it has one of the loudest purrs you can imagine. It really upset his ears and the poor cat kept being removed from room. Out rooms are echoy too and it really doesn't help

During his housebound days we got new neighbours who decided to go through the whole place doing it up. every tool came out. This was a terrible time. The worst was when they re did the garden fence. The nail gun caused massive pain shooting through ears to head even will ear defenders on. Then they put a sky dish right by bedroom window causing terrible head pain we now sleep downstairs and had to move fridge up stairs can't stand noise it makes

Too much brain stimulation either thoughts or sound cause red ear syndrome where one or both ears go dark purple and sting and burn

Have you tried hypnosis?

Some do home visits. They could maybe put suggestions to ignore and accept tinnitus and hypercusis?

Thorian• in reply tofeistyMiss1 year ago

Nothing worse than neighbours renovating, I experienced it when I had mild tinnitus, and it was reactive and tricky then. I wouldn't survive it now. My T and H cannot be ignored unfortunately, if I ignore it, I will get even worse. I have to live by it's rules now. I need ear defenders for plenty of things around the home now. I can turn on light switches but sometimes the click is uncomfortable, but not not too loud here. I do need ear defenders when feeding my kitten, preparing food, washing up, and sweeping floors and many other things. I've lived with these conditions a long time and I had to accept both otherwise I would have died long ago, but they are reaching limits I am really struggling with now. Simple things around the house are now difficult, and outside is a no go. For example, I have to wear hearing protection in my bedroom and bathroom just to walk across the floor. There are very loud creaky floorboards there, and it cracks loudly, even if you try and walk soft. Its loud enough to wake the neighbour if you get up in the night.....that's crazy to me....and another reason I want to move even though I only lived here 3 months.

Everyone has a limit of tolerance with these conditions, luckily, mine is really high, and I'm stubborn as well, but the conditions are slowly pushing past the barriers of what a human being can endure and I'm gradually losing the fight in me. They literally seem to have no limit. T keeps getting louder, (when I think it cannot because it's way too loud already) and my tolerance of sound gets lower. I know a girl who gets severe pain when a car passes outside her house. She has 0 db tolerance. And I know a man who is bedbound with it, also 0 db tolerance. So I know they can get even worse and I'm doing my best not to make them worse, but I keep suffering random setbacks. Hypnosis would likely cause me further irreparable damage, because you may drop your guard under it's spell and try to do something normally. I wouldn't want to risk it personally. But appreciate the thought.