Hello everyone this is my first post here.
I have had and lived with Tinnitus for over 20 years, but now it is starting to really wear me down.
Finding this forum and knowing I'm not on my own is a great feeling. Any advise anyone can give me would be much appreciated as I am now getting to the end of my tether with it.
I have been to my GP and ENT department a few times over the years but other than being advised of sound therapy I have had no other help.
Purrkins - I am just 6 years in to my T experience. So far I have had a similar frustrating lack of help from the regular health services but am now getting some benefit and many new ideas by having become involved with my local Tinnitus Support Group. Try yours.
Thank you for your reply, the lack of support and understanding of this conditions is mind boggling. How did you find your support group?
Ah. Well. Having been to a couple of meetings in neighbouring Bradford and a seminar organised by the BTA in Leeds three of us were inspired to set up the Leeds Support Group - our inaugural meeting was last week. We got a decent number of folk there, all with the same problems. Why are we doing this? Because it helps us as well as the people who we are now in touch with to compare notes, share experiences, and to have a right good mutual moan. Hopefully, one day, we will also be able to share positive news about a therapy that really does help.
Hello Purrkins and welcome to the British Tinnitus Association forum.
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 (information and support details)
takeontinnitus.co.uk (free tinnitus management programme)
If you’d like to sign up to receive ‘Focus’, our new free monthly e-newsletter, you can sign up at tinnitus.org.uk/forms/conta...
Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call +44 (0)114 250 9922)
We also offer a new web chat service at tinnitus.org.uk/helpline. If you are seeking an online ‘safe space’ to talk about your tinnitus? We're here to offer real time support, exactly when you need it. We listen, advise or direct, whilst engaging with you one to one when you are unable to make a call. We want you to feel you are able to communicate at your own pace in your own space confidentially with one of our Helpline Advisors who are on hand to look after you and answer any questions you may have around tinnitus. Simply click on the icon called 'We are here!' at the bottom right corner of the screen to start your chat.
Kind regards
Colleen
Hi Purrkins, I am in my 52nd year of this endless noise. It is something that I eventually became adjusted to until a year ago it became much worse along with Hyperacusis. I have tried just about every alternative treatment and would say the only person that has helped is a mental health professional teaching me CBT. Every day is a struggle but at least I have some tools to deal with it. Much luck my friend and hope for the future.
How did you contact the CBT advisor? Was this someone you've just found yourself or were you directed towards them by your doctor or audiologist?
Hi,do you know why it got worse and why your hyperacusis has come?
I woke up on morning and it was worse, much worse along with H. I really don't know.
Hi,the reason why I'm asking is I have tinnitus just over a year and had hyperacusis for three months at the start and it went away but it has came back now about 2 to 3 weeks and I can't work out why,I think anxiety definitely is not helping mine. Thanks
🙏
jmallordturner, how did you find your CBT advisor ? I really would love to know.
Thank you all for replying
Hi Purrkins
I have struggled for 30 years with my tinnitus since age 30. Before I started losing my hearing I was a professional musician, so you can imagine the depression I went through after having to give up on my career. However, I started playing the guitar again about 15 years ago and I'm so glad I did as it has kept me sane. I would say immerse yourself in your hobby, and if you don't have a hobby find one and do something that you love as often as you possibly can. Good luck.
Hi Purkins. After suffering tinnitus for twenty years, I am not surprised you're worn out with it! I have had it almost three years now and some days, I am at the end of my rope. After trying just about everything I could do myself, to try and get some relief from it, I turned to the so called health care professionals for help and there was precious little available. After a hearing test and a quick examination of my ears, I was told there was no cure and sent home with a handful of leaflets on tinnitus and told it wouldn't kill me so just live with it. The only positive outcome for me was the provIsion of hearing aids through the NHS and they have been very useful, especially when I get a spike. My tinnitus is caused by age related hearing loss, mainly at the higher frequencies. If you don't already have them, I would ask about getting hearing aids. Mine are pretty basic but they amplify all the sounds around me and help take the brains focus off the head noises. You can also get them with built in masking if required. I try and keep myself busy and concentrate on doing things which give me something else to focus on. I also take a low dose of Amitriptyline most days which calms the central nervous down and helps me sleep. I hope you find some relief soon.
Best wishes
Jimmuck
Hi Jimmuck,
I have had tinnitus for 3 years now after having a grommet put in my ear.. I have had many operations on my ear and now wear a cochlear implant . Life has been tough for me as I also have a lot of pain around my ear. I always have music in my ear and wear BOSE ear plugs at night to help me sleep. I have tried everything from hypnosis to acupuncture , but nothing seems to help unfortunately . I take each day as it comes , and try to keep as busy as possible. Mine tends to get worse at night time, do you find that too?
One day something will happen ... fingers crossed !
Hello 1Dar,
My goodness you've been through the mill but you're staying positive about everything so well done you! My tinnitus fluctuates from day to day and it's the unpredictability of it, apart from the head noise, which I find difficult to deal with. Some days it stays at a level I can cope with and other days, for no apparent reason, it gets so loud and intrusive it almost drowns out any other sounds. During the day and probably because I keep myself busy and don't notice it so much unless it spikes, but it seems to quieten down. I cant say it gets noticeably louder at night, unless I am really tired or stressed, which are both spike triggers for me. So far and touch wood...It has never prevented me from sleeping and I don't use any masking devices in the bedroom. Combined with a low dose of Amitriptyline, all I do is try and empty any thoughts out of my mind and just focus on my breathing. It sounds a bit woo woo but it works for me and I am usually asleep within a few minutes. Sometimes when I wake up in the morning, it's the first thing I hear and when that happens, I know it's going to be with me all day. It's such a depressing and at times debilitating condition that can suck the pleasure out of life but we have to stay strong and be determined it wont beat us! One day soon I hope, there will be a breakthrough and we can all enjoy some silence once again. Best wishes.
Hi Jimmuck. That is precisely my experience I have had with the lack of support and help, there is none available. There seems to be a huge lack of understanding the blight this Tinnitus can bring to peoples lives. Nobody seems bothered.
because of other health factors I believe it is stress that makes mine worse at times.
Sorry for the rant.
Good luck and best wishes.
Find a mental health worker who specializes in anxiety, they would know CBT. CBT is simple but demanding and requires constant vigilance and practice, much luck.
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