Living with Hyperacusis TTTS & Tinnitus

Hyperacusis & Tinnitus

Then in 2005 I was at work and was exposed to a very loud alarm for a prolonged period of time this brought on what we now know and as hyperacusis which is when you are sensitive to everyday sounds Tinnitus constant ringing buzzing in ears and also in it caused nerve damage to my inner ear which causes vertigo and sickness. I can't stand normal everyday sounds that you would take for granted and I used to take for granted. I mean things like talking, the TV, water pouring into a sink the loo flush, the hoover crocks clanging whistling, music, yes no more Darren Hayes concerts :-(((((

Being like this has totally changed my life I can no longer go out to work I have to be careful when I go to shops wearing ear protectors of different levels depending on where I am going. When I say it has changed everything I really mean everything from just a general conversation to watching TV to going out it all causes pain and discomfort. The piece below in blue was something I found on a group on FB and it is the best and closest way I have seen this disability described the only difference is to me it makes no difference whether it is winter or summer.

(Today was a rough day. As I headed out for the store the sounds outside were so amplified it brought on an instant headache. The winter months can be especially painful for those with +Hyperacusis as everyday sounds can be severely changed due to barometric pressure changes; like the Arctic blast we are experiencing here in the northeast.
My objective was to get to the store, get everything I needed as quickly as possible and get out. It was like heading into hell. My third winter since being diagnosed with Hyperacusis and Tinnitus and each one is so painful; winter is my hell.
The closer I got to the store the more pain I was in. I began to clinch my fist trying to grin and bear it. One of the issues with my +Pinched-nerves . My body is so tense in what doctors call a +Hypersensitive state from the pain, that +Tension causes other issues.
As I headed around the store my +Tinnitus flared causing severe pain and nausea to set in. It was such a high pitch ringing in my ears I couldn't stand it. My head was killing me. I found myself putting my hands up to my ears, trying to block it out at its worst.
My head was spinning, confusion set in and I had to rush. All the sounds, so loud, was like information overload. I knew if I didn't hurry I'd be getting sick right there at the store.
I only got 1/4 of what I needed at the store. It was to painful! It was to much sound; it was as if it traveled throughout my whole body.The pressure in my head kept building, it felt like I was going to get a nose bleed!
The only thing I could do was stay focused on getting out of there. I struggled to fight the nauseating feeling, which was overwhelming me at the checkout. When I got home, I started vomiting. +VERTIGO can have that affect on me.
The tinnitus was like a tea kettle going off; a loud whistle that would not stop. It lasted for two hours before to would settle back down to it's normal level. I wish I could say it ended but it never goes away. It's 24/7 none stop.
I wonder what we are not seeing, what are we missing! Maybe we should be trying to conquer this from an acoustic trauma point of view being that's what they call it when it gets so intense, so painful, so debilitating for me.
It's not much longer and I will see my neurologist again. Our focus is to find away to get rid of my tinnitus but the two are entwined. It's exhausting, days like these are so exhausting. It takes a lot out of me. I'm on bed rest!
My doctor told me whenever I have such a traumatic experience to rest and let my ears take a break from sounds. I find the sleep is helpful. I just wanted to write down the experience while it was fresh.
It's important to document the experiences as much as possible, it helps myself and my doctors to decide what to do next. I'm determined to find a cure. But it will have to wait, I need sleep.)
I also have a condition called Tonic Tensor Tymponi Syndrome which is when the muscle behind the ear drum fluctuates causing the ear drum to tighten or loosen which then gives the sensation of either my ear trying to close or there is something fluttering against my eardrum (not pleasant at all) I also have the fullness in ears when it feels like you have water in them my hearing goes distorted everything goes tinny and echoing as well as changing to muffled.
 I have been like this with my ears for 10 years now to be honest I can't see it getting any better the only thing I can do is learn to live with it which I am finding so so hard as it doesn't just effect my life but those closest to me as well.
over this time my depression flared up again to a point where I was nearly sectioned I have never felt so low even when all that was going on as a child this was worse and I was scared something had to be done. So I started to see a hypnotherapist and NLP trainer the NHS is worse than useless when it comes to mental health issues it' bad enough trying to get help for my ears but for mental help you may as well throw yourself off a cliff now.
I worked closely with my therapist for quite a while and we put aside my hearing problem and just dealt with the depression. it was great no I am not fixed and I have to work so hard every day as things don't come easy to me my life was full of negative stuff for so long I think it's just programmed into me so I have to think and work at things but I am in a much better place now thanks to her. I did stop seeing her for a while I thought I was OK and could deal with my ear issues but no I was wrong so I still see her and she is helping me learn to cope with the pain. As I said I have to wear ear protectors whenever I go out. We very rarely go out socially anymore if we are invited to a party it is a huge worry and dread for me and 99% of the time we give our excuses because I just can’t do it. But people don’t understand, how can sound hurt, how can you having a conversation make you physically sick trust me it does!
As for help in the health service well this is just as bad as the mental health care not many people have heard of H this includes audiologists that I see yes I have noise generators that I have to put in my ears but they hurt I’m told they are set at the right level but they physically hurt when they are in because they are adding more sound into my ears on top of the sounds around me. So what sounds am I talking about for example well the humming and buzzing of my computer for one you may sit there reading this and not even notice yours but to me I may as well be sitting in the middle of a busy motor way then there is the TV yes it’s in the next room but I can still hear it and most of the time it is screeching at me. Then there is the tumble dryer the washing machine, fridge and freezer the kitchen is a very noisy place even with just the basics on.
Being in the car also causes pain so travelling on a bus or train is a huge task. It’s really hard to tell you what hurts and how it hurts because we all take sound for granted and most of us take no notice of it at all like having the radio on in the background (not for me) the clashing of plates while washing up this all causes pain, imagine you know when people say that fingers down a black board set their teeth on edge well try to imaging that as pain and I mean sharp stabbing white hot pain that is the closest thing I can compare it to.
Then there is the nerve damage that was caused by the alarms these are the tiny hair thingies in the inner ear that have been damaged this causes pain also so even when there is no outer sound around me (I say this as I have my own audio system in my head)I have a constant burning ache and then shooting pains in my ears(yes that is on top of the pain caused by sound) To help with this I have injection every few months in both side of my jaw and temples which does help to reduce the pain to a sort of manageable level with the help of the other meds I’m on.

Now for the mouthful Tonic Tensor Tymponi Syndrome or TTS as I call it like I said it is when the muscle that surrounds the ear drum fluctuates and tenses this happens to all of us when our ears pick up sound this muscle either tightens or relaxes the ear drum so that the sound bounces from it and determines whether the sound is quiet or loud. For me mine sort of has a mind of it’s own (kind of like Tourette syndrome) it just goes into spasms and the only way I can describe it is to say it’s like having flies in your ears buzzing around hitting your ear drum and then the feeling that your ear is trying to close when sound is to loud (I know it’s hard to get your head around you should try living with it)

The other annoyance I have is tinnitus now for those that don’t know what that is, it’s when you can hear noises in your head (not the nutty voices they are a cause unto their own and we don’t listen to those lol)buzzing whistles humming and the more sound you put around you on the outside the louder the T gets on the inside like it’s saying I can get louder than that or don’t forget to listen to me!!!!!

So when all is quiet on the outside and someone says to me can you hear that? And I say hear what? And their reply is nothing well no I can’t hear nothing it would be lovely if I could but I don’t have that luxury or hearing complete and utter silence

And that is what I have to live with every day all day so next time you run a tap or flush the loo even drop a saucepan lid just imaging if that caused you pain and you will have some idea what it’s like to walk in my shoes

1 comment:

Carrie Williams said...

Wow, that sounds so horrible! I suffer from fibromyalgia and DDD, so I know how crafting can be therapeutic when the ol' body isn't as cooperative as the mind. God Bless!