this might be deleted because it straight talking - Tinnitus UK

Tinnitus UK

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this might be deleted because it straight talking

19 Replies

first thing i like to say is few people come on here and say well i put my tinnitus at the back of me and find thing s to do , these people who come on here sound like hero s who found a cure and all the rest are just wimp s and moan about it and the medical people who read this think well this cant be recognisee as a illness ,but what they dont say is my tinnitus is a mild noise and the sound s i`m hearing and not loud piercing sound s ,i have server tinnitus 24x7 i cant sleep well i get stressed continually the more i fight it or put it back of my mind only make s it worse listening to dick heads who are clever and found cure pisses me off ,every tinnitus is different ,we wont get accepted as illness so long as you got dick heads saying it s nothing and were all moaning adult s who just moan ,people who been Iraq fighting the war coming back with limbs being removed and tinnitus say the tinnitus is getting them down more because it s on all the time were try get a cure and helping people to cope and dick head s making it worse for us who suffer ,i have friend volunteer taking phone call s from people with t wanting end their life because it s too much , i swear because these people making me so mad i dont usually swear but people finding it hard to cope with and they listen to these smart arse people who thing they are perfect and we are just wimp s get s to me ,i have to say it how it is sorry if i offended any one but think what you say before you write it down , please,john

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19 Replies
Carpenter62 profile image
Carpenter62

I have come to this forum recently , and read the posts , it seams we all suffer in different ways , at different levels , some of us find things that help , and to others that's no help at all , I don't think that anyone is belittling anyone else, its just that you sometimes have to try things , they may not work for you , but some may help , we can but share our experiences and try to move forward , sorry not maybe a helpful answer , but a casual observation ,

in reply to Carpenter62

thanks for reply your right , i just get bit fed up of it, tinnitus i mean ,

JanAtherton profile image
JanAtherton in reply to

I agree with Carpenter62, everyone with Tinnitus has good days and bad days and if your tinnitus is due to nerve damage, or damage to the cochlea, either through illness, or through damage from working with loud equipment/tools,or music, there is a good chance that the tinnitus is here to stay, which can be frustrating. You will find your own ways to cope with it and they may be different from the ones others use. It is good to have somewhere like this that you can talk about those frustrations too, especially if friends and family members don't have tinnitus too.

I have had tinnitus since I was 7 1/2, I had chickenpox, which damaged the cochleas of both ears, I'm 46 now. I still have days when my tinnitus is sky high, like when I have a cold, or I have been to a concert and I have days where I can block out the worst of it with the radio, or music in the background, but it is always present.

djv1985 profile image
djv1985 in reply to JanAtherton

Hi, How in the blue blazes have you managed to cope with it for that long. Honestly I've had it four weeks if that, and through ear infection and secretly hoping it'll go at some point (long story) and I cannot imagine living that long with it. Honestly mate, you're a bloody hero. I mean I've read stories of people having it for decades and decades and decades, I've recently heard of a bloke who has had it almost his entire life and has never known any different (its apparently something he lives with because he can't remember not having it and so his brain fooled him into thinking it was just something everyone had and has never bothered him).

If we ever meet remind I owe you a beer to toast your struggle because just four weeks in I've been in some really dark places with really dark thoughts. You have my respect.

JanAtherton profile image
JanAtherton in reply to djv1985

I haven't had any choice, but to cope with it! I work from home (I repair jewellery) so I can have music, or you-tube on in the background all day to help block it out a bit. In a way, I'm in a similar situation to the man you mentioned in your post, I can't really remember not having it, it has been that long. It does bother me when it is particularly loud, like after a gig, or at night, but I usually listen to the radio overnight.

I hope your ears feel better soon and that the tinnitus goes with it, if not you can find coping strategies, or other ways that help make it a bit less annoying. I'm always happy to talk about those. Cheers and thank you, slàinte! (good health in Scot's Gaelic)

djv1985 profile image
djv1985 in reply to JanAtherton

Thanks and that's how I've been coping with what I've had so far. I was told not NOT to listen through earphones so I tend to carry my phone around and have that playing out waterfalls and or music but I do have a Docs appointment tomorrow with the same Dr who arranged the ENT appointment etc. so I'm hoping he can give me some good news.

JanAtherton profile image
JanAtherton in reply to djv1985

I hope he does give you good news! Yes, I have to break the no earphones thing at night as I would wake up my husband with any other form of sound maker :( My son doesn't have tinnitus, but he loves to use his google play home mini to play water, or fireplace sounds in his room and something like that may be helpful, if you don't have to share a room with anyone else.

djv1985 profile image
djv1985 in reply to JanAtherton

Don't share my room with anyone and have flash flood music or night jungle playing from spotify on a loop to get to sleep and have it near my ear (sometimes right on my chest) which tends to help. I'm trying to not make any long term plans for it though hoping that it goes at some point soon. I've been told different things but most people are saying it should go including a friend who had a very similar ear infection and had the ringing that lasted about three months so there is hope.

JanAtherton profile image
JanAtherton in reply to djv1985

Yes, I hope it does, most of the time, once the infection is gone and the swelling has calmed down, the tinnitus will go, unless there has been some permanent damage to the tissues and structures of the ears, or to the nerves.

djv1985 profile image
djv1985 in reply to JanAtherton

From what I've been told by the ENT doc at the ear cleaning there is no damage to the drum or the ear canal (think he said walls of the ear) so I'm hoping it does. Got doctors in like 50 minutes as of writing this so I'll be able to know for sure if the infection is gone gone and be sure if the drum and ear canal is good or not. So I'll update then.

I know one thing either way I'm going to have trouble sleeping without the sound of running water. I used to sleep to the sound of the tv playing in the background with a timer to turn it off but now I think I'm stuck in the routine of the running water lol.

Here's hoping its good news and the ringing does stop.

JanAtherton profile image
JanAtherton in reply to djv1985

That is good news!

djv1985 profile image
djv1985 in reply to JanAtherton

Been to the GP appointment. He checked out my ear and told me it looks clear. Can’t see any infection left and said he is confident the tinnitus will go but can’t say how long but doesn’t think it’ll stay and to go back in two weeks if it is still there and or hasn’t changed in volume. So here’s hoping in a few weeks (maybe a little longer) I’ll be free of this horrible bloody noise because it’s driving me nuts. Trying to keep my mind off of it though lol.

dsh2358 profile image
dsh2358 in reply to Carpenter62

Well said!!

Joeb17 profile image
Joeb17

Hi I suffer fro server tinnitus 24/7 and have had it for about 4 years .for over a weeek now I have hardly had any sleep and at the moment am feeling at my lowest and when I read people have managed there tinnitus I feel jealous and it does make me feel weak and when you look at the nhs website about tinnitus it says in capital letters it does get better and my gp said the other week it does get better try telling that to the people who have had it for years with no change .it makes me think I am not trying hard Enough to cope.i tried to end it last year but could not go through with it so I see where you are coming from.

John

HissingSid profile image
HissingSid

My tinnitus is constant and annoying at all times but I do have lots of days when I distract myself and it’s less of a bother to me. We are all different in how we cope with it. I used to keep a record of days when I found it intolerable but I stopped that as it made me concentrate on my tinnitus when the best way to deal it is to kick it aside and get on with my life as best as I can. Surely that has to be encouraged and not scorned at on here. Until the miracle cure arrives we all have a life to get on with. Maybe you should do so too and not moan at others who suffer just as bad as you yet get through each day as best as we can.

GERTRUDEANDDAISY profile image
GERTRUDEANDDAISY

I hope you are okay! Since I’ve had Tinnitus I’ve always thought it strange that it’s not considered an illness. Maybe if you share your story for Tinnitus week it might help people understand? I think that’s the problem people are still not 100% educated on T. I was talking to my auntie about all the stuff I had learned about T and at times she disagreed with me and then I realised she didn’t know enough about T - even though she has had it for years! We need to highlight Tinnitus more somehow! I personally think we need to flood social media with it using catchy slogans or something and of course educate the doctor practices! Xo

Wringing1212 profile image
Wringing1212

Dude, chill out.

I was hit by a truck I’m a cross walk. I’ve had many bad things happen to me. I have survived so much, I feel lucky to be alive, even with catastrophic T.

Try to relax as best you can and seek an internal solution.

When I reach the point where I can’t live with it, I won’t tell T patients about it because it won’t give them hope.

I do understand your point but it’s not helping you.

in reply to Wringing1212

thank you i understand ta

Sally07 profile image
Sally07

I get you. When mine started (and for about three months afterwards) I was annoyed with everyone telling me I 'just had to relax.' I even had one GP 'prescribe' me a self help book called 'Don't Sweat the Small Stuff'. It wasn't small stuff.

For some people, it doesn't get better and there's no way of knowing whether you will be one of the 'lucky ones' for whom tinnitus diminishes or even resolves. It's not the sufferer's fault if their tinnitus doesn't resolve. It's not a problem with their 'coping abilities', it's a problem with their brain.

For some people, it does get better though, and of course these people think they've got all the answers. Mine has got loads better since it started, and I don't know why. It's still very much 'there' and still annoys me, but it's no longer that loud screeching sound it used to be, it's more of a hiss now.

I firmly believe that if it's going to get better, it will do so on its own. No supplements, fasting, or mind control needed. Reducing stress might help, it might not, but you can't go through life never feeling stressed.

I say don't live your life 'expecting' to get better, but don't start thinking you never will. It's the most confusing and unpredictable condition that I know of, and I know of a fair few.

Very best wishes,

Sally

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