Sharing my dreadful Tinnitus with you...

[Brett_angel]

Hi all. I want to share an email I sent out of utter desperation recently to the tinnitus clinic in London. I didn't get a reply, but it describes how I feel right now ( and have been feeling):

Title: It's ripped and ripping me apart:

Dear J

To a great extent I don't know what I will achieve writing this email. I have had contact with Dr Stephen Nagler recently ( someone I've known for a long time virtually) who has always kindly helped me in the past but now finds my huge troubles beyond his remit right now. However , he implored me to contact you .Frankly, i do not have any affordability for private assistance but as I am truly at the end of my tether I thought it is only reasonable to exhaust my last avenues of contact.

Let me explain, I have had loud ringing in my ears for over 30 years. In fact, I also have a loud high pitched static sound above any noise which kicked in 5 years ago. I used all my cognitive skills to deal ( with assistance from Jane Henry book, very good) with those traumas and was able to find a way to live along side them fairly trouble free in the end ( as much as of course they continue to play in full verse). However , 2 months ago a loud bass like sound started in my left ear. I thought someone was playing loud music in a house or in a car next to me as I heard this pounding bass sound. I went to find the source and it became apparent that it was coming from my ear. The sound in a quiet environment is unreal ...pounding and rasping and loud. I can feel the sound physically and it makes all the other sounds feel like nothing in comparison . It gets mixed with other sounds of a similar frequency ( like car running sounds or commercial aircrafts passing overhead) to either exabarate them or make me feel disorientated with lots of confusing heavy bass noise. If I close the windows at home, it feels like there is a bass war going on outside but it's coming from my ears ( nothing is going on outside ?!?!) A truly confusing sound . If I sit in a quiet place it builds quickly into a huge noise and is utterly unbearable. It is crushing me and all the mental resources and knowledge I used before arent helping me. It almost feels like it can't be defined as tinnitus if that makes sense, because so many people describe tinnitus as ringing or high pitched whereas this is a low frequency deep ugly loud booming bass sound. Have you ever heard of anything like this ? I'm so desperate I'm reaching out hoping for some kind of miracle or light. Frankly, I'm so bad I don't want to go on and i truly feel like I will be soon taking my own life. I just can't see a way out. That is not a threat, it's just what my mind feels is the only way out of abject daily mental torture which debilitates do highly my daily life and pleasure.

My logic right now is that I cannot believe that anyone could live with this and if they do, it must be abject misery and suffering . The noise is so loud, confusing and wearing there is no comfort to being with it whatever cognitive reasoning I apply. Have you ever known anything like this ?

Thanks in anticipation

[Hidden]

Hi Bret. The loud bassy sounds are likely a form of hyperacusis. I had exactly the same symptoms and felt the same way as you.. that I really couldn't go on living with it. I am now almost completely free of symptoms. Not saying there is an easy cure for everyone and what worked for me might not work for you but if my story gives you something else to try then you might get something out of it. I've shared my story on my profile. Good luck. S

[Brett_angel in reply to Hidden]

Read your profile Steve . Luckily your situation is very treatable. Sadly, mine isnt and I'm stuck with it . End of tether stuff.

[Brett_angel in reply to Hidden]

Don't think.it is hyperacusis as even if.itsveru quiet there is an incredible noise .

[BIGSIRRZ in reply to Hidden]

Hi - where I can read your profile story? thanks

paul

[Brett_angel in reply to BIGSIRRZ]

Mine ? Just read whatni wrote in post

[M2303 in reply to Hidden]

Hi Steve/Hidden - I hope your are well. Can you please share your story - as I am suffering with the same problems. I am unable to access/see your story. Kind Regards.

[NicTinnitus]

Hello and welcome to the British Tinnitus Association forum brett_angel. Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.

We have some resources that you might like to check out in addition to our home here:

tinnitus.org.uk

takeontinnitus.co.uk

Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call [phone])

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)

[Brett_angel in reply to NicTinnitus]

Got tinnitus yourself Nic ?

[NicTinnitus in reply to Brett_angel]

I get it from time to time, usually when I'm stressed, or more recently when I did something silly trying to remove ear wax... I can usually acknowledge it and move on, but then I have more or less learned the management tips off by heart and can slip into practising them.

The first time I had tinnitus though was pre-internet following an ear infection. Even though that was painful, the tinnitus was worse and I got very distressed about it, and there simply wasn't information easily available. So I do appreciate how severe it can be, and I'm very fortunate that it cleared up - although it took many weeks to do so.

I also experience hyperacusis, but that's usually a sign I'm about to have a migraine attack.

Best wishes

Nic

[Brett_angel in reply to NicTinnitus]

Ok at least you are free from.the torment. That's nice

[NicTinnitus in reply to Brett_angel]

I realise I'm lucky Brett_angel. Then again, I think my brain is good at habituation, as I have a number of phantom sensations due to having MS and most of the time I can push those to one side too.

[Lindsay6 in reply to NicTinnitus]

Thanks for sharing, Nic. When my audiologist did the same , it was an added bonus to her already being great !

[NicTinnitus in reply to Lindsay6]

I'm glad to share - although of course the conversations here (and on our helpline) should never be all about me/us. But most of us have experienced tinnitus, and we do understand what it's like.

Best wishes

Nic

[Lindsay6]

Thta's not dissimilar to mine . Michael Leigh who I think is still a member of this forum explains how he has managed / come through some very ' bad tinnitus ' times. And Julian Cowan Hill who does lots of you tube videos was unable to hear the phone through his tinnitus - he took one root that has helped him , and others

[Brett_angel in reply to Lindsay6]

Sadly , I am fading and don't envisage a satisfactory quality of life going forward.

[Lindsay6 in reply to Brett_angel]

I do get it , and find each day of being positive , keeping going but at the same time having to manage the pain exhausting and dispiriting . I wish I had an answer. I think uncertainty is hard. I used to train NHS volunteer mentors for people living with long term conditions , and hourly berate myself for not being more able to ignore it , as I do because I still support homeless folk and think I should be stronger as they are , and not just in this weather . But we can not compare our pain with that of others - I am sure there are lots of people who wouldn't manage as well as we do , though that's not often much comfort. I don't wake everyday saying " This is the day it'll be just a bit quieter and less painful' , but I do hope that this is the day I can totally rise above it , and then am disappointed. There's a fine line between glip , platitudes of positive thinking and trying to make the best of a not great situation - which entails accepting things are not what they were , maybe never will be. I'm still nowhere near this as I'm too young to be able to retire ( and too poor to live much longer as I am ) , but I have no idea if I will ever be able to work again. Yes , I am starting some more voluntary work with homeless folk and those with mental health problems , and could accept that this is it for the rest of my life if I could afford to do so. I have to try and live day by day - take pleasure from having amazing friends - and put on three cardigans when it's cold ! I am sorry if this isn't helpful , but hopefully it might show that you're not alone in managing such challenging circumstances .

[Brett_angel in reply to Lindsay6]

Hi Lindsay. No, that is a very honest and good summary of how you feel. Yes, at the.end of the day I have exhausted all avenues to finding a way to make it better. The fact is had severe tinnitus for a long long time and now what I am dealing with has taken it to yet another level. That's the question , could i live a life as I am now, accepting how severe it is and making the best of a bad job ? At the moment , I'm not willing to accept that will be the case and it is such a major problem day to day . Yes, it is utterly exhausting as well.

[Brett_angel]

However, I accept my fate . I have tried everything as well.

[Lavend]

Could be choline/lechithin defificiency. Brain has 1/3 of that fat in the brain. I have been taking 1 to 2 grams choline/lechithin and ringing is getting better each day.

[Admirable]

I deal with some of the same things you do.

Physically feeling the sound accept I deal more with the high pitched frequency ringing and the really low delta wave frequency and hearing "voices". Kind of like a un clear overlapping voices in a school cafeteria.

But I wouldn't be much help since I've dealt with it on my own.