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Freddie

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Reply with quote  #1 
I wanted to share my story as I felt really that I should. February this year I went to a gig, during it my ears started to hurt pretty intensely. It had never happened before but foolishly I thought nothing of it. On the way home my ear ache became worse and loud tinnitus accompanied it. What followed was one of the worse weeks of my life. I couldn't sleep due to pain and tinnitus. Everything hurt my ears. The tv volume was so low my wife couldn't hear it. Birds singing, wind blowing too loud, everything affected my ears. I also had what felt like a marble in my ears passing from one to the other. I battled on like this for 4 weeks, I was basically losing my mind, I couldn't sleep in the same bed as my wife as the noise was too loud from her breathing.. after 4 weeks I was caught in a fire alarm. My ears somehow got worse. I became practically house bound for two weeks in virtual silence. I was now getting intense headaches too noise as well, i had never had headaches in my life.. ENT were next too useless in all this. Basically just said it will get better don't worry. It seemed like a bit of a joke to be honest to them. Anyone who goes through this be prepared for that . My GP did their best but didn't know what to do. I was eventually given anti depressants. I never thought someone like me would ever have to take them. I was sent to a counsellor., she basically said I can't help you, I honestly thought she was going to start crying when I told her my story, not great for morale .. although the books she gave me helped for the panic attacks I was now having. My turning point came that unfortunately I had to go private to an audiologist. He ran tests, actually took me serious and gsve me a plan and said gradual exposure, not too much too soon and expect setbacks. But do not sit in silence! This will mean your ears adjust to that level of noise. I immediately went on the attack. I spent the next week going for walks, going to a shopping centre (Bloody painful) and driving around before returning to work(again bloody painful). Every week i would turn the TV volume up gradually. I had setbacks but I was driven on by the fact I had my first baby coming in July. I was racing against time to be honest. It was a slow process but do not let setbacks control you, treat them as part of the process, a muscle breaking and repairing. Don't be too cocky though and go to metalfest 2018, gradual adjustment to louder noise I went to acupuncture, again I'd have laughed in your face if you'd told me last year I'd be doing that. I feel like it may have helped but most importsnt bit was that I felt I was doing something and fighting it on reflection. I'm now 8 months later. My baby cries alot.. A LOT.. I go to crowded bars with loud music, I've been to football matches, I listen to TV at normal volume. I walked past a band with a drummer busking yesterday, only a couple of yards away. My ears do occasionally feel a pressure but nothing I can't handle but I am sensible at times. I'll obviously be giving bonfire night a miss, I won't be rushing to another gig any time soon and I'll go to a quieter part of the stadium at the football. I am too all intensive purposes well though. I'm off the antidepressants and my tinnitus is noticeable but does not keep me up or affect my day to day living. I realise I'm lucky, it's been under 8 months but.. Please do not give up, it's a hard and slow road but attack it.
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tonyccc

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Reply with quote  #2 
So happy for you,well done.How long did it actually take to cure your H after starting   the noise exposure?
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Aplomado

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Reply with quote  #3 
Wonderful!

I recommend that you keep a pair of earplugs in your pocket and use them when sound bugs you too much.
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JohnMarc

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Reply with quote  #4 

Great! Thanks for posting! I have a very similar story. Started about 10 months ago with everything hurting like you say even low volume TV, people talking to me in normal volume in the office... Pretty much go to work, which is a pretty quiet environment for me luckily, but still by the end of the day my ears would be burning and begging for silence and rest.. so come home and sit in silence and do nothing maybe play some sudoku... stopped meeting my friends or going to the gym or anything else outside..  anxiety couldn't let me sleep... started taking trazodone to sleep..

 

Specialists no help.. so started sound therapy as this network taught me…

would get very slow improvements that I could notice over a few weeks, but each setback would make me lose weeks of progress in just a day. And for a couple of months I thought I had hit a plateau because I wasn't getting improvement and I worried that this is it... this is as good as it will get.. I could talk to people, go to most restaurants, go to the mall (other than shops with loud music), listen to music at very low volume for short amounts of time... but no tv, no chance of going to movies, bars, road trips etc.. and always an inch away from a major setback... I wasn't ready for this to be my life...

and then at the 8 month mark, miracles started to happen.. I broke through my plateau and started getting improvement so fast I could notice from one day to the next. Even when I would get overzealous and overexpose myself a little too much, now I wasn't getting any real setbacks like I used to. I continued with sound therapy (mostly music therapy, and when I would get tired of music, the pink noise cd from this network). And working in front of my computer all day in my quiet office, I could have my earphones plugged in all day for whatever sound therapy I felt like or needed at whatever volume I needed.

 

I bought Spotify premium, and Youtube premium.. basically make my sound therapy as comfortable and enjoyable as possible.. my phone lg v30 has 75 volume steps with the volume rocker buttons if you are connected via wired earphones.. this was VERY IMPORTANT… most android phones have 15 volume steps and iphone has 25.. but for our kind of sensitivity, the difference between 1 level and the next is too much of a jump if the total steps are only 15 or 25… with 75 volume steps on my phone I could adjust the volume to just the right loudness for what my ears needed at any given time depending on what I was listening to, how long I had been listening, how my ears were feeling… I also decided that even though the T was bothersome, I would make peace with it so I could focus on treating the bigger evil H. And once I started ignoring the T this way, it has become much quieter… might be because of my change of attitude towards it, or might just have been time for it to get better anyway.. I’ll take it either way.. Also I had been taking a few supplements (NAC, ginkgo biloba, b12, magnesium citrate) since the beginning, but at the 8 month mark I also started taking L-citrulline, and that coincided with when my improvement got exponential… again, I don’t know if it was causation or coincidence.. but the idea of L-citrulline is that it is a vasodilator which would help increase blood flow to the inner ear since inner ear has very little blood supply going in which is why it takes so long to heal.. I know gingko etc are also supposed to be vasodilators, but I thought that L-citrulline is a bodybuilders supplement because they feel it in their body and muscles right away and see it in their gym results in the short-term… I have never heard of a bodybuilder using ginkgo for a vasodilator in his workout routine.. (Arginine is actually more popular among bodybuilders, but I went with L-citrulline because it is easier on the stomach and it actually makes the body produce more of its own Arginine [or it converts to Arginine, I can’t remember which] so it works the same way)..

 

 

 

I am at a point now that I can listen to music from morning to evening on my headphones at volume levels that normal people would listen to, and still not have my ears feel exhausted at the end of the day. I can actually listen to it pretty loud too, and not feel pain in my ears, but that’s bad for normal ears too, so I should probably keep it cool

 

I am going to movies, loud bars even with live music.. and just feel the occasional pressure or slight tinge of pain which comes and goes in a few seconds without even me needing to withdraw from the loud environment.. this occasional pressure is also becoming less and less as days go by..

 

I am not 100% there, but very close to it I believe.. I can now see light at the end of the tunnel, bright and big, and beautiful and full of life.. I have learnt gratitude like nothing else in life ever taught me before.. I am grateful for the body’s ability to heal itself, I am grateful for sounds and music, I am grateful for this network and Dan and Rob and all the amazing people on this network who have shared their wisdom and experiences and treatment strategies, music therapy etc.. without this network, I don’t think I would have got my life back.. THANK YOU FOR MY LIFE.

 

So don’t give up… you will have ups and downs and even plateaus, which might feel scarier than the ups and down (like they did for me).. but trust that God and/or Evolution and/or the Universe has made man a sophisticated machine capable of self-healing.. yes there are some things that sadly humans can’t self-heal from (or don’t know how to), but we KNOW from success stories that we CAN heal from hyperacusis.. so pray or meditate everyday… ask God or the Universe, or your own Mind for patience and strength and healing every day and every night before you sleep. And pay gratitude to God/Universe/Self for all the things in life you still have… I started logging my gratitudes in a gratitude journal app, there are many such apps, use the one that you like.. for us H sufferers, we know that there are millions of things in life that everyone takes for granted but they are something to be utterly grateful for, because we used to take our hearing for granted, but now would give anything to have it back to normal.. so be genuinely and thoughtfully grateful for five fingers, be grateful for skin, be grateful for water, coffee, cars, shoes, money, food, eyes, brain, breath, pets, family, science, medicine, ear plugs, headphones, computers, internet, ice cream, sudoku, toothpaste and a million other things… and keep the treatment going and keep trying different strategies for sound exposure and see what works for you

 

 

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tonyccc

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Reply with quote  #5 
Excellent story thanks.It gives us hope
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Freddie

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Reply with quote  #6 
I can relate to so much in that story. Certainly the setbacks as well. Heartbeaking to lose weeks of work by gambling on something that turns out to be too loud. The volume control is a great idea. I noticed on the car radio that the move up was too much for me and I would be stuck on a level for ages. Phycologically it's massive to make any gain. I'd say that I started to notice improvement within a few weeks. But I plateaud or had set backs. Then after about 6 months I was in a bar that was unfortunately to loud but instead of it being a massive set back it was only 24 hours then returned to previous tolerance. That felt like a huge step at the time. It was trying to condition myself that set backs were part of getting better and they would happen but the key was how I dealt with them, that was very hard to get my head round. I really struggled with music, I just couldn't tolerate for months at any volume but I've finally worked that up gradually.i can definitely relate to being grateful, a walk to the shops now can make me stop and realise how lucky I am to be doing it, when I finally got back to watching a football match it was a game with only a few hundred pepple there but to me it was the best I'd ever seen. Everybody's different but I noticed my tinnitus massively improved when I stopped the antidepressants. One of the hardest things is people don't understand hyperacusis. "so you've got tinnitus?" Still drives me mad!
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tonyccc

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Posts: 6
Reply with quote  #7 
 Very interesting the point that stopping antidepressants improved Tinnitus massively.I will try and do that.,but then again what do I use for sleep?Maybe a glass of wine?
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WhatHappenedDenis

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Posts: 46
Reply with quote  #8 
Tony:
Interesting about wine for sleep - in the early days I needed Anti depressants for sleep and was afraid to take any alcohol in case it caused a spike - Last Xmas I had a glass of red wine to celebrate the occasion and slept well - and that became my sleep medication - What causes spikes for some replaces anti depressants for others :-) Strange how the brain works!
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WhatHappenedDenis

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Reply with quote  #9 

John

Interesting observation
'and then at the 8 month mark, miracles started to happen'
This time frame has been mentioned in several posts and the same happened to me. Must be the time taken for the nerves to re form or something!

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JohnMarc

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Reply with quote  #10 
WhatHappenedDenis, you are right about the 8 month mark in a number of posts. However, we don't know if there are enough of them to be statistically significant. I am saying this because many people might have passed the 8 month mark, or might even be a year or more into it, and still not seeing the 'miracles' happening, and I don't want them to be discouraged.. because depending on how badly your ears were impacted from the injury, your genetic make-up, your diet, your level of physical activity etc. your recovery time can vary greatly.

I know you know this, WhatHappenedDenis, but I am just clarifying for readers who are still in their recovery process.. because I know when I was down and out with my H, it was easy for me to fall into a spiral of negative thinking if someone had mentioned a certain sign of recovery and I wasn't seeing that sign in my case.

But you are right about there being a specific 'turning point' of how it takes the nerves a certain amount of time to re-form or heal or whatever.. be it 6 months, 8 month, 1 year, 2 years on a case-by-base basis.. and until you reach this turning point it will be roller coaster of ups and downs and lefts and rights and spinning and flipping upside down.. so it might feel like you are not moving forward.. but after the turning point, it will be a smooth ride up the escalator


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WhatHappenedDenis

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Reply with quote  #11 
Marc:
The only way we can figure a pattern is if we know the causes - the other two posts had the same causes - UNKNOWN - same as mine ! Not noise trauma related and accompanied with T
What was the cause of your H and T?

You are right about giving hope to others. When I came across the other post (who had the same 'UNKNOWN' cause) I pretty much followed his timeline for improvement - H getting better after 9 months and H and T beginning to bother me a lot less after about 2 years (I'm at that stage now). Soon I should start moving towards a normal (hearing) life (based on his posts) - I still plug my ears at Bars and other such noisy places because I have heard horror stories of people who improved and got too brave and suffered serious setbacks !
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JohnMarc

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Reply with quote  #12 
My H and T caused by acoustic trauma.
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Freddie

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Reply with quote  #13 
Mine was acoustic trauma as well. Been absolutely fine before then
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tonyccc

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Reply with quote  #14 
I cannot tolerate noises over 70 db.People told me I speak loud so to day I measured my voice level and it was over 80 db but somehow it does not bother me .How come? Am I scared of other noises but not my own?
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Aplomado

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Reply with quote  #15 

Quote:
Originally Posted by tonyccc
 I cannot tolerate noises over 70 db.People told me I speak loud so to day I measured my voice level and it was over 80 db but somehow it does not bother me .How come? Am I scared of other noises but not my own?


I have wondered that myself!

I just now read about may be the answer:  the acoustic stapedius reflex

https://en.wikipedia.org/wiki/Acoustic_reflex

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Margy

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Reply with quote  #16 
I have read that the tensor tympani muscle contracts just before we speak, and also just before we chew.
It’s my impression that the stapedius muscle only activates with a louder sound, and not in anticipation of a sound. ( the tensor tympani often activates in anticipation of a sound.)

This Wikipedia article seems to mix the two different muscles together in the same reflex. But the two different muscles are enervated by different nerves; the trigeminal nerve for the tensor tympani, and the facial nerve for the stapedius.

Is it possible that the Wikipedia article is lumping these two muscles together when they are really different and separate in their functioning?

I would call it a “brainstem-evoked response” (the startle to noise) that involves the tensor tympani muscle.

Any thoughts or insights?

(When I looked up “acoustic startle” , the article used the term “brainstem evoked response”, which I thought was enlightening. I was looking up my symptoms over the months and years involving many muscles in my head startling to noises, and I came upon the acoustic startle, which involves all of these muscles to tense up. These muscles are the neck muscles front and back, and also all the chewing muscles, including the temporal muscles going up to the top of the head. All these muscles jump and get tight and sore with noise)
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TallDude

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Posts: 119
Reply with quote  #17 
I bought the book "hearing loss" by Jos J. Eggermont

Somewhere in the book he refers to this study from 2014.

https://www.hearingtracker.com/blog/can-a-glass-of-wine-a-day-protect-your-hearing/

As with everything, keep it moderate.

Some who claim that their T goes louder after drinking alcohol probably react to other chemicals that are in the wine, rather than the alcohol.

For me i think my T reacts to coffee.
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TallDude

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Reply with quote  #18 
Quote:
Originally Posted by tonyccc
I cannot tolerate noises over 70 db.People told me I speak loud so to day I measured my voice level and it was over 80 db but somehow it does not bother me .How come? Am I scared of other noises but not my own?


For me it seems to be the opposite, i can tolerate up to 95dB (when i don't have an onset of T&H), but it seems chewing and speaking triggers my setbacks. I can feel it when it gets triggered when i speak, i get a sharp pain. Usually the start of a setback for days. I also have had multiple times at dinner my T just spikes out of nowhere (but settles down after a few minutes).

So probably triggered by my tensor tympani muscle.  



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