Hi all.
Just popping by with a quick post trying to get a sense of what the Tinnitus UK forum offers you in terms of you living with tinnitus.
Does it help? Are there days when you don't want to read posts? Have you visited it for a while or are you new to tinnitus and have recently found it?
Your insights and opinions are very much appreciated.
I think it makes us worse. I reached out for help and no one gave me any reassurance that things can get better or even hope that people with same symptoms as me can get better. In fact one person said my symptoms may lead to dementia. It's just doom and gloom and needs to be shut down.
It's an interesting point. I see lots of reassurance from users that things can get better and indeed they may say as much. I have to say that I don't recognize the version of the forum that you're describing, but you have a right to your opinion.
Having read the post that you're referring to, Jamdonut, the responder talks about their parent developing dementia but doesn't cite the idea that tinnitus has led to it.
Is that a concern you have, because the research which has been carried out cites a connection between undiagnosed, long-term hearing loss and the potential onset of dementia in some cases - it's not a case of 'someone develops tinntius, inevitably develops dementia'.
Tinnitus might accompany some people's hearing loss, but the connections which other online outlets have drawn are, let's say, on the 'clickbait' side of things.
Hi Pat. No one answered my question. Can you please do so. I know people who have tinnitus who after some time get use to the T ( this was me perviously) or it reduces and same with Hyperacusis. I have both. My T has several different intense tones with muscial T and increases in volume depending on external sounds. Yesterday after 2 months I went to a quite restaurant which as it got louder my T got loud and distorted the music playing in the restaurant. That evening when trying to sleep I had some new base drums to contend with. This is my life. I'm young still have a family to bring up. Please tell me from dealing with hundreds of people that people like me get better and live a full life. I do meditation everyday and try desperatly to keep postive. I have had to cancel all.my weekend plans as it involves things that my H will not cope with . I need someone to tell.me they have lived this and it gets better🙏
Hi please contact Julian Cowan Hill he has videos on You Tube and an app 'Quieten' free months trial, i am forever recommending him as he knows everything about Tinnitus and he got better after a long time - he went on to help hundreds of other people as well, he explains what T is and how we can lessen the noise etc, i heartily agree there is a lot of negativity online so avoid forums which make you feel despair, even the Tinnitus website is dismissive of certain holistic practices as they are not medically proven to help even though they can help people, do not despair, reach out to Julian and he will reassure you.
I paid for a session with jullian. Told me to get massages done and it should get better. He had no answer for me apart from getting out of fight flight mode. It's been 3 weeks since nothing helps.
Hi Jam, hope you don't mind me asking but what part of the body did he suggest was to be massaged and secondly, how much for the session?Regards.
Getting out of the fight/flight is key and this can take some time, three weeks is a very short time, our bodies have often been struggling for some time so we need to be patient and find what works for us, he is advocating you trying to find ways to relax your body and mind, it's a process not a quick fix, the fortnightly zoom sessions with him and others around the world in different stages of progress is incredibly helpful, we are all at different stages, we want to get better quickly but sometimes something needs addressing in our body etc..I.e.for me it's muscular tension and stress overload, I am working every day to get better as it probably took 22 years of physical hard work causing my body to get into this stressed state, please persevere, take his advice, join the zoom sessions.
Thank you for caring. I have to come off here because I feel I'm fixated on it. Xx
I'm here having searched for help with tinitus. Im new to tinitus having only had it a couple of weeks where I've noticed it but the last couple of days I've felt anxious which has made me fixate on the tinitus and it now seems louder than ever.
Early impressions of this forum are that it is helping me knowing that other people have it and that there is potential to rid myself or at least lower the noise through different bits of advice.
I've also downloaded the quieten app which I read on a thread which it was recommended.
Hi Mo779. I think that trying to get through the early stages is the hardest. You would try anything to make it go away . ( I know I did.) In a way that's part of the problem , being fixated on it. You hear it all the time , everywhere . ( I did). Later on you get moments when you realise you haven't noticed it , maybe just a few minutes or hours. No one can give a timeline , we all are different. The first time I got it , it took maybe 2 years before I thought it had quietened down. Eventually didn't notice it at all. This time I am much calmer about it , I think that has helped a lot. So maybe I got semi habituation after about 6-8 months. Now 18 months later I don't notice it at all during the day cos I'm busy ( except now on this ) . But I ignore it . My earphones with LBC has helped a lot . Maybe it delays habituation but worth it as I haven't been too stressed this time( more annoyed than anything). Just Remember there are probably several people you know who actually have it , but dont talk about it , bacause they already learned to ignore it . Best Wishes
Pat, I’ve had tinnitus for about sixty years. I originally came here to see what help people can give to each other.
From what I’ve seen, there are many forumites who provide positive hints and tips to others.
I firmly believe - though I’ve no actual data to confirm it - that most people habituate and therefore dont return here to this forum. To return here simply reminds them of difficult times. Just an an example, I didn’t hear my tinnitus at all today but writing here has brought it back.
That's me as well. Had mine since I was a child and am now 70. Most times I'm not aware of it but when I'm tired or upset I do but then I know why I'm hearing it if that makes sense.
you are right Happyrosie, I was here for a few years 20 odd years ago. It helped me a lot . Gradually I used this site less as I got used to the T. Eventually stopped coming here , when it didn't bother me anymore because I stopped noticing it.. Strange thing is I don't even remember waking up one morning and saying "oh I cant hear it.". It doesnt happen like that. Its very gradual.
It helps me to hear what people in the same situation have to say. It makes me feel less isolated. I wud have struggled much more without it.
I come here so as not to feel so alone. I'm not looking for reassurance, but a place where I can relate to what other people are going through.
Now you know you are not alone . So many people struggling with it . Good days and not so good days. All of us here with different stories. Chats about what helps and what can make it worse. The people here all understand.
This forum has been a lifesaver for me, I always read the posts everyday and reply if I can be of help, it’s almost my comfort place as I know I’m not alone and it calms me down if I’m having a bad day.
Thank you to all at Tinnitus UK and those who have responded to my posts and helped me.
I think it is good to have somewhere to go to when you're really struggling and other people get what you're experiencing. I do dip in and out though mostly in habitually to mine. It's a vital service in my opinion
Apologies for flipping predictive text in my reply just now!
I think it helps most people with T, I know it really helped me when my T started hearing that I was not on my own and reading about how people coped with T. I don`t use the sight as much now as I I just try to live as near normal life as I can but look at the sight some days to see if I can give some advice to people just starting with T.
Hi Pat,
I had longstanding T before joining the forum (20 + years), and I had been around other such forums, on and off (mostly off), for much of that time. I am here mainly to keep an eye open for developments in treatments, particularly any specific to the UK, but it does take my mind off my own T if I am able sometimes to respond to other's posts in a way that might help them. I count that as a benefit to me.
Hello Pat. Tinnitus UK is now one of my five a day, whatever that means. If you are looking for a single word, then I'd say it be 'hope'. Hope for all.
Hi Pat, As some will know i have been on here for maybe 7-8 years, and i value sharing my experiences. I have had T for 20 years and found that T does not fluctuate for me, at least. You cannot beat Tinnitus (get rid of it), its the way you treat it. Anxiety toward it is worst, as it SEEMS to increase decrease the volume depending on your level of anxiety (yes, i . had that phase). I now ignore it, or find locations where it "increases/decreases". Its a game for me.
The more you ignore it the easier it gets. Get on with life there is more important things.
On a personal note to Jamdonut I am sorry you felt left out-sometimes we all have changing priorities-but we help when we can. Its my personal belief there is no link to dementia, though older people do get tinnitus. Invariably dementia can come, but A does not lead to B. I am not medical. Get help. Talk to Pat (telephone them), speak to your GP. Use the best tool for education "Youtube". You are on here, well done.
All IMHO
I find the forum helpful as I feel less isolated knowing there are others with the same condition. The message that habituation is necessary has helped most as it has helped me focus on this. I don't expect the T to clear up or clear off! It is very loud. As with the others it does appear worse when I'm texting about it which shows distraction helps. I've been concerned about dementia but it is not a given outcome. It's best to focus on positives. As I have depression I have learnt this through many years of battling but the support on here is helpful. It is very sad to hear how others are suffering.
I come and go as I follow other forums for other issues too.
Thanks for being there Pat and everyone else.
I'm new but so far I've found no real benefit at all.
Pat,
The forum helped me initially when T started, and I was in a bad place. It made me feel I wasn't alone, this was an issue. It helped me with more structured ideas and thinking about what I could try to help cope/habituate, and also correlate what may be causing my T. This led me to try a few things out and also how I think about my T and manage it - such as keeping a note of situations that pique my T and recognising them and not getting anxious about it. It's also helped me with thoughts about what could be a "aggravating" my T, and let me think about what could be causing this.
So for me this forum has been beneficial. Initially I felt very alone with this issue.
Hi Pat
When I developed tinnitus in 2014 I was a mess - finding this forum was one of the things that gave me hope. I became a member of what was then the B.T.A. and at that time we were sent a Quiet Magazine every quarter. It was so comforting to know there were others with tinnitus and who had come to terms with it. I would read their success stories over and over again whenever I felt low.
Now I just enjoy coming on and reading the posts and all the good advice from other members. It`s just to good to know you are there.
Lynne
It's reassuring to know there is a genuine place to go for help and advice. Conditions like T always attract people selling false help and cures for profit.
Hi Pat - I read all the posts but only usually respond if I feel I have something positive to contribute. My tinnitus is unusual in that it is Musical Ear Syndrome. I am grateful to everyone who contributes but people who come on must realise that this isn’t a ‘quick fix’ forum and we have no magical cures. Thanks to all for the work put in keeping this going it is good to have somewhere to share our hopes and fears. x
I have been really anxious reading some of the posts. I always worry that mine will get worse, and it has. However, I have found so much support on this site and especially from Happyrosie. Years of experience and such a calming influence. Only this morning I felt overwhelmed by my T and was panicking about never habituating and having to live like this forever. It took me some time to calm down. I tell myself there’s worse things I could have.
I think it helps knowing you are not alone .Theres always someone on here with advice and sympathy . Posters can say how they cope with it . New sufferers especially need that. People who don’t have T cannot understand how we feel . Only us !!!
Hi, Pat,
It really does help knowing you're not alone. Reading about other folks experiences - both good and bad - has guided me in dealing with this problem. Whenever I've replied to posts, I've always tried to put a positive spin on things.
Please, keep up the good work!
Respectfully submitted,
Keoni
Hi Pat
I just really want to echo what most people have said.
I have found this site invaluable, I’ve had tinnitus since November 2023 after having microsuction in my left year. I found The tinnitus at first so distressing and overwhelming, it was all I could think about. Joining this site made me realise that I wasn’t alone with this horrible condition and it was so helpful and comforting to read of the many coping strategies that the members of this site were able to offer to try and alleviate tinnitus.
I recently started another thread about the problems I have been having with my hearing aids and the amount of advice and helpful information I have been given by fellow members of this site has been tremendous and I really do appreciate it and again you realise that you are not on your own.
Like other members, if I reply to any post I try, if possible, to say something positive because at the end of the day hope is all we have got.
Thank you Pat and all the team for the good work you do. Also, thank as well to all the Members of this site for their contribution and advice.
Best wishes and Healing Thoughts to all.
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