Bill, I felt exactly the same bud. The only difference is that I went to a loud gig in a bar and was sat at the front. I had a feeling at the time that I should leave, but I didn't. I sat there and watched the whole thing. I remember having thoughts along the lines of 'this can't be good for my ears', but looking around the room I thought 'oh well, everyone else seems to be fine'. That is literally how I felt at the time.
Fast forward 3 days and I woke up with a piercing dentist drill sound in my head, electrical zaps and my usual hissing behind it all. I had had T for well over 10 years at this point but only mild, the hissing and the high pitch screeching was now off the charts. I massively freaked out and starting searching for ENTs and audiologists. I paid out to see people right away (6 months on NHS - I knew this because 2 weeks prior I'd just seen an ENT for my allergies and that's how long it took). However, I received no real help, so I struggled on with my life in tatters. I had to quit my band (my life is music) and I stopped going out. My anxiety became out of control along with my mental health; I really didn't see anyway back either.
I beat myself up everyday asking myself: why didn't I just leave? I couldn't shake the feeling and it was eating me up inside. It was hideous guilt.
My hallelujah moment came when I accepted my situation. It's a hard word 'acceptance'; it's even harder to apply. You have to let go of your guilt in order to move on. The tinnitus doesn't change but your underlying emotions do, and this is not something that should be overlooked. Our emotions make us who we are. They control the state of our mental health and wellbeing.
Have you tried counselling? CBT or any other therapy to help you move on?
I think if you find a way to fully embrace and accept what's happened to you, then you will feel all the better for it.
Thanks for your words Ed,they mirror my thoughts and feelings exactly so it's good to know I'm not the only one who thinks like this when things happen.
But,it's just a little more difficult for me this time,I have accepted things no matter how hard it was over the years but this is just a whole new ball game,life forever over kind of thing.
When I developed T in January 2011 it took me months to come to terms with it,I had no idea how or why it happened but it just did and there was nothing I could do about it.I remember making a promise to myself that day that I would never make things worse,my goal in life was to protect my hearing,habituate and get my life back again.
And that's what I did,my T had settled to barely audible and I adjusted my life to accomodate it,I adapted as I had no other choice.I began seeing friends again and socialising which really helped with the sadness and I can safely say I was a happy born again man by October of that year,my life was back and it felt amazing.T no longer had a grip on me but I always respected it,never wanting to provoke it.Anytime I had a spike I noted what caused it and knew to avoid it from there on out,the only thing that caused it to spike was beer and I'm not much of a drinker so this wasn't a problem for me.
Then in March 2012 I made a fatal error,a few friends were going to this venue and I decided to join them albeit reluctantly.I knew this place was going to be loud and I didn't do loud places,but I know why I agreed to go,I wanted to prove to myself that once I'm cautious I can live a somewhat normal life with T,that I can go and live my life fully like my uncle does and not have this over hanging element of fear in me.
I was never one for loud places anyway but I had avoided them for over 14 months at this point and I was tired of having to ditch my friends and go home the second somewhere loud was mentioned.
So I went home,grabbed my earplugs and went to the venue with my friends.
I remember sitting in the queue outside and began weighing the decision,I began thinking of"but if it gets worse there's no going back"and"but you have good earplugs,be careful and you will be ok"It was like having an angel whisper in one ear and a demon in the other as I waited outside,I was scared but simultaneously happy to be out with my friends again.
We entered the venue and it was loud,I popped in my earplugs and walked to the bar with a friend and got a drink.We sat there for awhile and I then decided to give myself regular breaks by going outside to the smoking area,when I got there I realised it was even more fun out here than inside so this is where I decided to spend the majority of my night.Anytime I walked back inside I would pop the earplugs in and stay away from the speakers.
Needless to say towards the end of the night I was pretty drunk and I got dragged onto the dance floor by some drunken girl as I was walking past.I danced for a few minutes to avoid it being awkward and that's when I realised,my ear plugs had been knocked out!She must have snagged the string and pulled them out and here I was dancing beside the music.
I remember in my drunken state saying"it'll be ok,don't worry"but then an alarm went off inside my head saying"don't be stupid,get out!"and that's what I did,I grabbed my jacket,got a taxi and went home.
I woke up the following morning greeted by a LOUD reactive tone,like a BOOOOOOOOOOP noise going through my head.I jumped up and knew I had made a huge mistake,a massive mistake and in came all the grief,regret and self hate along with it.
I had been so smart so why did I go there?To prove that I could do it,that with earplugs I could still go where I liked?I should have never gone is all that ran through my head,I had come from a dark place to light and now here I was straight back into it again.
I prayed that it would settle and vowed never to make that mistake again,I sat there and worked out what needed to be done to prevent this from happening again,I wasn't going to just ignore the T but work to prevent it getting worse and that's exactly what I did.
I adjusted,yet again and noise levels were always monitored and avoided if necessary.I sold my car and bought a quite BMW,I exchanged my power washers for quieter electrical ones,I used full hearing protection when using any tools or louder equipment,when it came to socialising I didn't go anywhere loud,if it did get loud I simply left no exceptions.An example would be when I went to my friends birthday,I walked inside with a mate of mine,heard the loud music,tapped him on the shoulder and said I'm out of here.This happened a lot including weddings and such when the band would start playing,I would say my goodbyes and leave.I even turned down two great jobs in those years because they involved loud environments!
All in all I adjusted my life for the better but always respecting T and I'm glad to say that it dropped off hugely within 3 months,all I had was a barely audible hiss in both ears and that was it and I was keeping it that way.I didn't let T rule my life but I respected it as much I could.
I was back to my old happy self within 5 months,I was completely habituated to my T and life was great once again,I felt completely normal and life simply couldn't have been better.
In those two years I only suffered a 20 minute spike once so that tells you how careful I was,but maybe I could have done,more I don't know.
So two years had passed and things were great,life was great and T was never on my mind,I thought about it for maybe 10 seconds in an entire month that's how habituated and well I was at the time.I had just finished a car that I was restoring and had actually just ordered sound deadening for it as I thought,over the long run the noise of the car might not be good for my hearing as it was a tin can of a car and noisy when going at speed,it didn't bother me but I just wanted to be cautious(Starlet GT turbo)
Then the nightmare happened,in December 2013 I went to my friends birthday party,I was feeling the best I ever had at this point in time.I walked inside and the place was stupidly loud,I talked with a few friends and walked back outside to get away from the music.Eventually we were all ushered back inside as their was a surprise for my mate Barry,we walked inside and the doors locked behind us and in came this stripper for him.They began playing music really loud and I tried to relax a little and enjoy the laughter of what was happening.After awhile I decided it was time to get out of here,I didn't want to over do it and screw myself up but of course I didn't think that was actually going to happen.
I got outside and noticed a TTS and became concerned,I decided after a little while outside that it's probably best that I go home and that's what I did.Luckily the next day I was fine,no problems at all and I continued on with my life.We then had a Christmas party in a restaurant a week or so later,it was here that I began to notice something was wrong.We had just finished our meal and went to the back bar for a few drinks(soft for me as I didn't drink alcohol)and a band came into play some soft songs.The band wasn't even loud by no means were they loud,they were just singing some traditional soft Irish songs with light slow singing,I could easily have a conversation with everyone at the table without raising my voice.But,I noticed as time went by that I was getting another TTS from just sitting in the restaurant and things became slightly harder to make out.I asked everyone at the table if they thought this place was too loud and they all grinned and said it was peaceful with confused looks on their faces.I stayed a little longer and when I walked to my car I really noticed this slight TTS,getting a bit worried I went home and on my way home I noticed that my voice sounded like a robot to me?Like a Dalek or something?When I got in things were ok so I slept it off.A few days later I went to my ENT to have a check to see if something like wax was causing it and there was,my left ear was impacted with wax.He removed it with a tiny bit of suctioning(which I hate)and then gave me a hearing test that was normal and sent me on my way but as I got into my car I could hear my T blaring loudly in my right ear.
As I drove home along came the robotic voice again and my T grew louder,by the time I got home it was like a gas pipe leaking in both ears.
I sat there freaked out,not knowing what to do or what the hell was happening.I ran to my GP and tried to get steroids and of course I was declined.
I decided to take a few days off work and rest at home in the hopes that it would settle,the distortion backed off and the T slowly dropped a little but was still way louder than before.As I sat there in my room I decided to look up T research videos and things of that nature,it always helped me feel a little better when going through something like those.And then,that's when it all hit the fan.The video ended and loaded up another video with related content,a high frequency noise video.This high pitched noise just came out of nowhere lasting no more than two seconds.I sat there shocked at what had happened,I froze waiting for something to happen and that's when my left ear started zapping and beeping and my right started booping really loudly.With that the sound of everything in my room became amplified,my computer just grew louder and louder and in a panic I ran down to my parents.When I got into the kitchen the sound of the oven,the fridge everything just sounded ten times louder!I fainted,right there in front of my parents.
I came to in the back of my fathers jeep at my doctors office,we walked inside and told him what had happened.I was referred to an ENT but when I got there I realised the guy was an idiot,he actually cut my ear canal with his poker thingy and I just got up and left.
At home,I was a complete wreck,I sat in my room absolutely devestated that this had happened,I could not believe it,I had been so cautious and fate just screwed me over in an instant.
I began researching and found that I had H,I couldn't bare any noise,even tv was too loud for me.I digged and digged as to what causes this and just couldn't find anything conclusive,H was all a big mystery of the brain/CNS and I was more confused after than I was before reading it.During this search I found that people had great success using desensitisation therapy i.e TRT and the likes.I read all the success stories on Google and watched all the videos on YouTube and it gave me hope,hope that I could cure this unknown beast!It was at this time that I happened to come across this forum hence why I'm here now.I read all the success stories and basically did what everyone whose new here does,I decided I needed to find someone trained in TRT.
And that's what I did,I found an audiologist who specialises in T and H and booked an appointment with him.
Nearly a month had passed and I was still a completely miserable wreck,I was so close to ending it all back then but TRT gave me hope,hope that things would get better again,I just blamed myself for not being even more cautious.I spent a lot of time in my grandmothers and went for walks everyday,anything to help cheer me up as I waited for my appointment.
I went to see him and got a full hearing evaluation done,and he told me my hearing was absolutely perfect and that I hadn't damaged my hearing.This was a great relief to me and so we began my desensitisation therapy alongside CBT.
It was a long process but over the coming months I got better and better and my T had dropped back down to a stable hiss again,I adapted and sold my cars yet again and bought much quieter cars,I worked so god damn hard for that first year and I made at that point an 85% recovery.I felt great again,it honestly did feel like a miracle to get to where I was,from not being able to tolerate tv to being my old self again!I felt blessed,I felt reborn it really was an amazing feeling knowing that I had somehow managed to climb through hell,tooth and nail and come out the otherside.I did still have some sensitivity,really high pitched noises were uncomfortable something like a smoke alarm or really squeeky brakes but for the most part I was completely normal again.I did still avoided loud places and noise as I did before but I didn't care as I was happy again and back living a happy life.
So two years pass by and things are great,I go to a car show with a girl that I would later begin seeing.Whilst we were there she noticed that I was extremely reluctant to go look at the drifting that was happening there and that I simply wouldn't go near any sources of loud noise,that's when we sat down and I told her about my T and H that I was somewhat hiding from her at this point,I wasn't ready to tell her that I had been through hell just yet,not really something that you talk about with someone you barely know let alone someone your attracted to.
She was completely understanding and somewhat sympathetic towards me about it and it felt great that she understood that I had limitations in what I was willing to do i.e clubs things like that were never going to happen.
After the car show we began seeing eachother,and I was ecstatic!!I never thought anyone would be interested in me,I was a bore who led a quite life in the car scene but that wasn't the case,she liked me!
I even remember the night I got my first kiss from her,I pulled my car onto the side of the road on my way home and began jumping around like a lunatic with happiness,I was just overwhelmed with joy that I had finally met someone someone that I really liked.I can't honestly tell you how great I felt that day but it was to be met with tragedy only a few days later.
We went bowling a few nights after and we went to a family gathering a week after that and things were great,we spent a lot of time with eachother and I was careful about what I exposed my ears to,I always had earplugs in my pocket and earmuffs in the boot of my car.The bowling was ok,wasn't loud but the balls hitting the floor hard was uncomfortable so I limited myself to one game only but I began slightly going outside my comfort zone a little bit,nothing too drastic but just little pushes here and there and I quickly realised I could tolerate a hell of a lot more than I previously thought.But of course I never broke the golden rule of being idiotic,if things got loud I got out
Just as things were going well my dad suddenly falls ill out of nowhere in October 2015 and so began the long business of running to the hospital everyday to check on what the hell was going on with him,I loved my father beyond all words.And then I got the phone call,I remember sitting in KFC with my girlfriend and a few friends laughing and chatting away,I had just swallowed a painkiller as I had a slight headache from the busy days before.I answered the phone and that's when I heard it,"your father has cancer,it's in the brain and it's not good"
I sat there in a state of shock,I had been through this hell before as it took my brother from us years ago and here we were back in it again.
My father rapidly deteriorated thereafter,everyday I would see a once strong proud man turn slowly into a bed wetting child as the tumours took over.He lasted all but two weeks,before he went he last words to me were"look after your mother,get out there and live your life son,do me proud"and with that he was gone.
I was in a state of despair after his death but I knew I had to be strong,my mother and family needed me now more than ever.His words had landed with me though,and I was going to do him proud,that I was going to make a great life for myself in his honour.
A few weeks after the funeral things were ok again but my head was feeling a little tired after the whole ordeal and noise so I took it easy for a week and relaxed at home.
And then,just as my luck would have it something stupid would have to happen.I woke up and lay in bed beside my girlfriend half awake,she went to give me a kiss on the cheek but it was too close to my ear and the pitch stabbed it with pain.It wasn't on my ear just near it but I jumped up out of bed in a shock,she was always so careful with my ears and then this happens.
I tried not to panic,my ear was in pain and felt a little full but no increase in sensitivity or T.I decided to take it extremely easy for the coming weeks,I was still riddled with fear that this had made it worse.I went to see my GP and he removed some wax and sent me to my audiologist who performed all his tests and said no damage was done,it was most likely a muscle contraction which is common in H patients.
This reassured me a little bit and the pain did begin to back off again so I slowly returned to life,this is the first time I ever really experienced pain with H.
I got out everyday whether it be work or going shopping with my girlfriend etc,basically normal everyday living.I did protect my hearing when needs be but I never overprotected them either,just in obvious situations.
But this pain kept coming back and then going again in December 2015.I was around a lot more noise this month but nothing major,it started off in the early days of December at her uncles going away party,there was Irish music playing but I had my earplugs stuffed firmly in my ears and left after maybe half an hour or so.The next day my head and scalp were stinging along with my neck but then it would pass again.This would happen on and off a little over the coming weeks as we git all our Christmas shopping done etc.
I was getting more and more concerned about this pain,it was over my head and scalp and would burn at times but then it would go just as quick as it arrived.
On the 18th of December me and my GF went to England via ferry to visit relatives.We drove 6 hours across the U.K(something I've always wanted to do,don't know why)and when we arrived in her brothers house in St.Albhans here I was greeted by this stinging burning pain all over my head and neck,it felt like my head was being squashed.I rested in her brothers flat before going out for a meal in Japanese cuisine place.Not too noisy so had my plugs at the ready.We got back to our hotel room and here I was again greeted by this horrible pain and now I was becoming concerned.The following day we went for a tour around London and I wore earplugs the entire time,said our goodbyes and headed for the port.When we arrived there this pain came back really strongly and intense this time and I began to really panic now.We got back to Ireland and I slept for two days and the pain was gone.I went to my GP and then my neurologist who both diagnosed it as tension related,that I had been under a lot of stress lately and that I was to take things easy for awhile so that's what I did.I was given muscle relaxers along with creams to relieve tension and told to take a warm bath everynight to ease it,it seemed to work and I felt a bit better after awhile.
It still came and went a little throughout January and again I was becoming more and more concerned by it not leaving,it was still very much there on some days and gone the next.
On the 26th of January me and my GF went to a comedy show and as usual I had my earplugs in and ready.It wasn't too loud there and when we got home the pain hit me like a tonne of bricks,my head was stinging like I had just stuck it in a bucket of needles!It was then it dawned on me,was my ears causing this?Its not ear pain and my T is still at its same level and I don't feel any extra sensitivity to sound?So how could my ears be causing neck pain?I hit the web yet again and couldn't find anything apart from tension popping up when I typed in my symptoms.
Over the next few days which were quite it went away again and I just could not work out what the hell was causing this,I even had my GF massage my neck and shoulders everynight trying to relieve it.Then one day in work a colleague shut a door near me quite loudly and in came this pain yet again,but this time my ears went hot and burning with it and I finally realised what the hell was going on,it was my ears causing this pain!
I got home in horrible pain and went to see my doctor yet again,he said the same thing as last time and I told him that I think he's wrong and that I need further investigation so I was referred to another neurologist and audiologist.
When I got home my ears began ringing louder than before and my sensitivity increased along with it,I knew there and then that things had gotten worse,that my ears were causing all these symptoms.
I went to the neuro and he couldnt find anything wrong and said its either tension or your middle ear muscles are causing trigeminal neuralgia symptoms.
I returned home hopeless,I rested up for a month and began sound enrichment etc and basically my original post is what happened from there on,my audiologist screwed me a month later.
That's basically my entire story,not that anybody asked for it but it clears my mind getting it all down in writing.
I just have no luck with this thing,everything that could go wrong did for me.
Member
