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.
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.
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.
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.
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.
Why does everyone seem to have permanent tinnitus here?
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