I have just joined this group and I'm trying to find ways to deal with 24/7 tinnutis any advice would be grateful from fellow sufferers
New to the forum: I have just joined this group... - Tinnitus UK
New to the forum
Hello Linda. Lots of people find T hard to deal with especially when it first starts. But there’s a lot of us around, say ten percent of the population, so most people manage eventually.
I’d say you should start your journey towards acceptance of your T by being aware that, whilst there’s no cure as such, it’s very possible to deal with it. Start of by going to the website of British tinnitus Association. Take their “Take on Tinnitus” module. Maybe give their helpline a ring.
You may well get other replies from posters here, they are all helpful!
Hi Linda3017 Welcome to the forum 🙂 You've come to the right place. Everyone here knows what's it like . How long have you had tinnitus? If you haven't read it yet there's a good book - Living with Tinnitus & Hyperacusis . It's a good starting point.
Thank you for your reply, do you find it easier since reading the book
Welcome to this forum Linda , how long have you had tinnitus ? Everybody copes in different ways and some people have tinnitus mildly and some find theirs too much and unbearable . Whatever be the case remember to give yourself time to adjust , the brain does adjust after so many months. There have been numerous posts on here for you to read . There are books written on tinnitus too. It helps to have some background noise on gently. Perhaps a radio , TV or a walk can be relaxing and listen to the outside noises , birds singing etc . Try not to get anxious as T feeds on anxieties . I’ve had mine about 20 months and my journey hasn’t been easy but I’m getting better now. Make sure you get checked out with your GP whomight refer you to the ENT clinic who will also do an audiology tests . I hope you get on alright. You haven’t given us much to work on about yourself . We are here if you need to ask lots of questions . Most people eventually find a coping strategy . Good luck to you Linda 😊
Thank you so much for replying, I'm pleased you are coping with tinnitus better now, I have been diagnosed with meniere's which has given me mild to moderate hearing loss in my left ear, the tinnutis is an up shot of that mainly in my left ear, I have a hearing aid that works a bit, on reducing it during the day when there is noise, but sometimes it's hard to ignore, I try to keep active.
I had an Aunty that had Meneries disease. She was so bad with it she couldn’t go out. I have mild dizzy spells that I cope with. I think your doing very well 😊
What really affects me the most is , if I get tired/fatigued etc , because I have arthritis too , then that’s my worse time. If I’m too tired , mainly in the evenings , then after my tea/dinner whatever, I have to lay my head down on the settee with the TV. I fall asleep inevitably and then think to myself oh what a nuisance I’ve missed my TV programmes. I now have to record stuff or watch on the I player. I cannot cope with my head if I’m tired at all. I just feel too much pressure in my head. I think we are all on this site suffering different symptoms , I have read an awful lot of previous posts on here and have learnt an awful lot. When you read what others are going through it makes you put your own tinnitus into prospectus. I am lucky that I have no hearing loss. Let me know if you want to chat , I’m always here 😊 😊. I have two poodles I walk every day and that helps me . Helps with arthritis too . Be kind to yourself. xxx
Thank you so much for your reply, bless you your arthritis doesn't sound nice, I can relate to missing programmes on TV thank goodness for recording and Iplayer, I imagine the dogs help for exercise and company, have a nice day and take care
Hi Linda
Tinnitus started for me about 3 months ago. Most of the time I can get on with things and don't notice it. Anxiety seems to make it worse and I asked others on here about that and got lots of replies saying anxiety is a real culprit!
Noisy things like the vacuum cleaner or the hair dryer can temporarily make it worse. I've realised that you do adjust but it can still get you down sometimes. I try to keep calm and not give it any importance.
Good luck I hope you are okay, it's really lovely to have people to share with on here. xxx
Hi yes I agree with you it is nice to be able to talk to people on here, I'm ok but like you said it gets me down sometimes, and anxiety definitely makes it worse, hope you are coping okay 😊
Welcome Linda3017, There are lots of extremely useful tips on the forum as well as on the BTA website. I totally agree with others that the Take on Tinnitus resource is a great place to start. There are also some easy to watch free webinars on the BTA site tinnitus.org.uk/free-webinars
I am not sure how long you have had T but have you had a formal diagnosis and are happy with the support you have from your GP, Audiologist and/or ENT?
I managed to live well with my T by putting in place a combination of education on the condition, distraction techniques, behavioral techniques and support from others with the condition at BTA support groups. What have you put in place already to 'cope' with your T?
Stay Safe
Hi thank you for your reply, how are you, my GP has been fairly helpful, my ent consultant not so much, I've had tinnutis for about 7 months, I've now got a hearing aid in my left ear, but feel it's not loud enough or needs white noise in it, I'm currently having hypnosis 3rd one tomorrow, and I want to look at cbt, I try distraction, music, keeping busy, exercise, how about whats worked best for you
Here are some of the elements I had in my plan, hopefully they make sense
• Sound therapy - I used a sound generator app to help me sleep (sound of waves and rain) plus I used positive reframing while listening to these sounds (I thought of really nice beach holidays I had spent with the family; this was not only distraction but also helped enforce positive thinking while I was anxious)
• CBT - Although I was sceptical of counselling, I found it very helpful and helped me see what types of negative thoughts I was having and how this was affecting my feelings. I found tools such as the APPLE model very helpful as allowed me to – pause, reflect, and reframe negative thoughts. CBT also helped me understand our natural negative bias and gave me tools to manage my thoughts and feelings which ultimately took a lot of power away from my T
• Exercise – Not only does this release endorphins but even if I was just going for a walk I would not only exercise but use behavioural techniques such as active listening where I would listen 'through' my T (this is where you listen for 20 seconds to something in the distance e.g. car or planes and then listen to something close up for 20 seconds e.g. your footsteps, this helped my brain to focus on something other than the sound of my T and help 'practice' listening to the world around me. I also found Swimming really useful as I could not hear my T while I was splashing up and down the swimming lane
• Body scans - This type of mindfulness exercise was great to being me into the moment and away from negative thoughts and/or away from focusing on my T
• Video Gaming – Finding a hobby or activity that really makes you focus on something was really useful. I found online gaming really helped me as I was so engrossed in playing the game, I would have periods where I didn't 'hear' my T as my brain was focused on something I was enjoying. Most folks find hobby’s they really enjoy has this effect
• Affirmations – I had a list of sayings I would use to help me stay centred and grounded when I was struggling e.g. 'this will be pass', 'my plan is to manage my T not manage me'
• Avoid avoidance – Often we want to hide from our T and this is impossible so I made sure I lived my life by trying to avoid my T, I would use the distraction and behavioural techniques to ensure I was working a plan which would ultimately allow me to manage my T. One thing I found as I became more comfortable with my T was to say hello to my T before I went to sleep so I had acknowledged it and this allowed my brain to 'move on' to think about something other than my T
• Don’t mourn my old life - It’s very easy for our lives to shrink when we get T and we wish for things we had in our lives before T. I found this quite negative so I always tried to reframe my thoughts in a way where I was trying to effect the future with T rather than wishing for my life before/without T
• Empathy - I attended BTA virtual support groups, at these groups not only did I learn more about the condition, I learnt behavioural/distraction techniques but also by sharing and listening to others with the condition I felt a great sense of empathy and support which again helped with anxiety and worry knowing I was not alone plus there was hope that I could habituate and live well with my T
• Support Network - I realised that having a good support network was important as not only did this help my stay positive but by also having folks to talk to allowed me to decompress. The BTA virtual support groups were excellent but I also made sure my family and closest friends understood what I was going through and this helped me feel safe and positive which encouraged me in sticking to my T management plan
• Understand that the more I give my T focus the more I am feeding the T and the anxiety - This was important as when we first get T it takes over our lives but this constant focusing on the perceived noise of our T just made me focus more on it and made me feel down. To try and arrest this focus I would use a combination of distraction and behavioural techniques to take the power away from my T
• Kindness - Having T is tough and it’s not your fault you have so it BE KIND to yourself, beating yourself up will only feed worry and anxiety. I grounded myself when I said be kind to myself by telling myself I was following this plan of distraction and behavioural techniques which I know had worked for others with the condition so if I just stuck to the plan things would get better.
Thank you, so so much for your reply I will be looking at trying some of things and not letting it rule me quite as much, sometimes it doesn't, how do I find out about the forums please
Hi, I think you mean the support groups (if not let me know), you can find the list of virtual zoom and face to face support groups below (FYI, a lot of the face to face groups are still not meeting due to covid). tinnitus.org.uk/find-a-supp...