Hi I havent sent a message in a while as I am having treatment for cancer , so I know this will not be helping my mood in relation to Tinnitus
I am 4 months in now with T & still finding it hard to deal with. I am trying to do CBT with Debbie Featherstone & the relaxation exercises are helping but struggling a bit with the practical exercises but maybe my mind is wandering to much. am invited to a wedding in 3 weeks & not been out socialising since onset of T . So was wondering how everyone copes with music & alcohol etc . I used to be so sociable but scared now . Also I won’t start my cancer treatment Immunotherapy for a few weeks so obviously won’t be drinking then & only ever drunk small amounts anyway . Also my T is bells or roaring in my head. & hissing In my left ear , I dread opening my eyes in the morning these days as it’s always there waiting for me ,
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Yogachamp
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I’m so sorry to hear of your illness, Yogachamp. I had cancer seven years ago so whilst I don’t know how you feel I do have sympathy, and can tell you what I did.Firstly, the various therapies I had made no difference to the T.
Secondly (I’m assuming you’re going to have chemo) booze doesn’t go well with chemo. I had chemo on three-weekly cycles and had wine only during the second and third weeks after infusion.
Thirdly, I found socialising (during the two weeks when I was feeling more or less well) was very helpful in keeping me sane. Everyone is so caring.
A wedding is only a few hours so you might be able to put up with loud noise just for the time it’s on. And if this is too hard, can you leave early? No one would would hold it against you.
The other thing is, you are dreading the T so you’re giving it the attention it’s craving. Try to find things to do that distract the mind from it. I’ve not had CBT but would imagine it takes some time to “work” so patience is needed.
Oh and something else, Yogachamp. surreyccfan made a post in response to someone else’s question yesterday and made a long and very helpful post concerning how s/he deals with T. Please find the post and have a read.
Hi HappyrosieThank you for your lovely post , I will read that post you mention. I can’t wear ear plugs as I wear hearing aids I guess I could take them out if things got to loud but I be quite deaf then , like you say I should be OK and I agree would rather have the distraction . Hope you are doing OK too .
Sorry yogachamp I wasn’t thinking. “Tinnitus in two ears. How can I sleep?” Was the title and DiegoDiegales was the original poster. Surreyccfan made some helpful remarks in response to this,
Sorry. “. Tinnitus in two ears. How can I sleep? “ was the title of the post, made by DiegoDiegales Surreyccfan made a long helpful comment afterwards.
Yogachamp, sorry to hear you are having a tough time. First off I would say make sure you 'Be Kind to Yourself' it sounds like you having a very tough time of it and I found being kind to myself and not beating myself up was key in getting control of my T.
I found CBT very useful in helping me reframe the negative thoughts about my T, as with everything we do on our T management journey, timing is key. I know when I first had T I struggled to focus and take on board behavioral techniques and could only really work on distraction techniques, so again be kind to yourself.
I am not sure if you are doing the online course or 1-2-1 course with Debbie but maybe let her know you are struggling with focusing on the course and see what support she can give you. I think as I mentioned in the above post I found the APPLE model ( getselfhelp.co.uk/apple.htm ) really useful in helping me think more positively about my future with T, I was introduced to this when I did NHS CBT. It took discipline and a lot of repetition to re-frame any negative thoughts but for me it really helped with these types of thoughts and the associated anxiety.
When you talk about dreading opening your eyes in the morning, I think we all feel like this when we first get T as we are in an emotional fight/flight arousal state and it is very hard to stop thinking about the T. For me as I practiced distraction & behavioral techniques while also going to BTA support groups to learn more about the condition, treatments and share/listen to others with the condition. This really helped me get on top of my T and slowly I got out of the fight/flight state and I began to stop seeing my T as a threat and it slowly went from the first (only) thing I thought about to something I rarely think about (FYI, my T hasn't changed in tone or volume in the 2.5 years I have had it and I know live very well with my T).
In regards to alcohol I no longer drink as when I had my inner ear event I got hearing loss and vertigo as well as my T so I stopped drinking as it made vertigo worse. I have heard some folks say alcohol is no good for their T but I have seen others say that it helps them relax, I think it is a personal thing. A bit more info at BTA tinnitus.org.uk/food-drink-...
In regards to music and socialising, I think for all of us our lives can shrink when we first get T as we just don't get enjoyment from the things we did pre-T. However, although this is easy to do I think its not a good thing. I have heard so many audiologist, ENTs and Psychologists say we should try and keep doing the things we enjoyed pre T as this helps us feel like we are living a normal life and as we gain enjoyment from them this is good for our mental health. For me I stopped listening to music and only really used it for distraction techniques, then as I was having this very same discussion with an audiologist I told him I used to love dancing and he said why did you stop, I talked about how I felt low, my hearing loss and my vertigo but it made me think 'why HAVE I stopped' so I put on some soul music and had a good old dance to it and I have to be honest I felt better about myself, so I kept it up and is now part of my weekly routine. I do not mourn my pre T life, instead I have adapted to living with T and I have gone back to pretty much everything I did before I had T and this has really helped me to manage my T (this took some time and I took small steps, but as I did I celebrated each thing I did, again I think this is really important to show yourself how we are moving forward with our T journeys).
In regards to socialising, the above rings true in that I think its important to do the things we did before our T. The one thing I would add here is that it is difficult to control external environments, so I would have a few coping techniques to help me when out. I would always bring ear plugs in case things were loud so I could protect my hearing/T, I would say to myself if I was struggling with my T I would take myself out of the environment and doing some calming breathing exercises to ensure I would not get overwhelmed and I would ensure the close friends I was socialising with knew about my T, vertigo and hearing loss so they could keep an eye on me and make sure things did not get too much. If you are going to the wedding have a think about what it may be like and what you may do if things get too noisy, overwhelming, etc. so you have prepared and 'if' this scenario happens you are prepared for it plus this also means hopefully any fight/flight arousal is muted as you are prepared.
I am trying the CBT with Debbie. & have contacted her for some help with the cognitive behaviour as finding that part hard to get into . I know everything takes time so I realise have to be patient . I have been better this weekend at trying to block myself from thinking about it all the time . I do have to have faith that eventually your brain will accept it & you can function normally again.
Thanks again for all your useful information your a star .
Hi YC. It's good to hear from you again. Give yourself credit. You're doing really well coping with cancer & T. Don't worry if you can't manage CBT at the moment. As for the wedding you could try earplugs from the BTA shop and - if it all gets too much - go home early. I think people will be glad to see you even if you can't stay for the whole day. Four months is still early days with T . Those feelings of dread first thing in the morning do ease with time. All the best .
Yes it’s been tough four months with T & Cancer I have had some many problems with surgical drains & now my wound is infected so it’s a tough battle . If I get through all this I will be going on a lovely holiday . That’s good news that the morning noise should die down a bit eventually . I certainly hope so . Hope you are OK too .
I'm OK thanks YC. I'm sorry you're having a tough time. Keep thinking of the lovely holiday you'll have when you get better. I'm reading a book by Jennifer Rees Larcombe - A journey into God's heart. It's made me laugh & cry. It's always nice to have a good book on holiday .
Just a small point to add - last week I saw and stayed with three of my very lively and noisy little grandaughters, 3 of them. When I arrived at their house after a longish drive. I was greeted with very excited high pitched voices. I was due to stay 4 nights and I wondered how on earth I was going to cope. Anyway I made the decision to really try hard and put the “ T” in the background. It didn’t work at first. I decided to thoroughly enjoy my grand daughters and really try hard to ignore the “ T”. Do you know what I actually mastered it. It is very tiring and I did have to excuse myself from time to time and have a lie down ( so tiring). But I actually mastered it .You can do the same if you positively tell yourself you are going to do it .
Read. Tinnitus , from Tyrant to Friend . By Julian Cowan Hill
I would say it is important to do “normal things” as much as you can. Give yourself a time limit if that helps so you know you will leave at a set time. Don’t let the anxiety of tinnitus control what you do and when you do it otherwise you end up being trapped by it.
Thanks BarnabasYes Your right I think I think it’s the fear that you might be having a bad day puts you off. But I know life must go on , no matter how tough it may be .
Oh heavens Yogachamp do feel for you. I am newish to the T site so I am still learning but on a positive note know of 2 colleagues who have responded well with the immunotherapy so God Bless and good luck
Hi Linley Thank you for your kind message & that’s encouraging to know about immunotherapy , I meet with my oncologist next week so hopefully I will know more then . Hope your coping OK with your Tinnitus I too had it for four months & trying to accept it & hope eventually I won’t hear it as much .
Hi Yogachamp, if you are like me, I wonder home many times you have said "what have I done to deserve this" Like you as if Tinnitus is not enough to deal with, I find my old blocked coronary artery is becoming blocked again. having to sit down every 10 mins. I have a least had 77 illness free years and things do wear out, I am now taking it one day at a time and counting my blessings,
Thanks Mike Yes I check in now & again on here as it’s good to know your not alone with this. I’m sorry to hear of your heart condition & hope they can sort it for you . Yes it’s true we do wear out eventually although I do know a few people in there nineties still going quite strong so I suppose it’s the luck of the draw . Stay strong best wishes Laney.
Hi yogachamp
Sorry to hear you’re struggling with T and C
If interested please see my post from about a year ago where I describe how I got rid of my T, that I’ve had for 40 years, just by redefining it
Hi and along with everyone else let me say how sorry I was to read your post. T is very scary to start with and I found totally overwhelming. My thoughts are you need to get out - talk to people, you will find it an incredible relief to have input from others, especially after having to isolate. I found people so sympathetic and helpful. I too wear hearing aids and in noisy situations turn them down, can you do this with yours? Please try and go, even for a few hours, to the wedding. It will lift your mood and make you feel more in control, honestly. Good luck with your treatment, sending love and positive thoughts your way. Kim x p.s the odd drink makes no difference to my T but stressing definitely does.
Hi & thank you For this kind message & yes I know your right I am going to go to the Wedding & just try enjoy myself despite everything , I have an infection at the moment in my wound it’s like one thing after another but you just have to carry on best you can . Hope your doing Ok too.
Tinnitus makes us and has made us all feel scared at times and makes you wonder how you will cope in certain situations, it really is a case of grab it with both hands and go for it, if these situations did not bother you before tinnitus, then maybe ask yourself why should now be any different. Its not the T that wants to take over and make you change your lifestyle and choices, it's actually you and your subconscious, Debbie will teach you that, so just as your subconscious makes you make the negative choice, you in your conscious mind can make the positive choice, you are in total charge of your choices and over time with practice and repeating those choices, your subconscious will automatically do them. Change your mind to change your brain, to change your mind, Debbie will teach you that too.
So if it were me, I would go to the wedding, take musicians ear plugs with you for the noise, I take mine everywhere and use them when the need arises. You may find it's the best thing you have done in the past four months to help you in your tinnitus recovery. If there are bits that don't work, use those as something to learn from and tweak a bit for next time.
Give yourself credit for how far you have come, the positive steps you have taken regarding CBT, you are fixing you, when It comes to T.
Go for it and enjoy the wedding, hey it's probably just the thing you need to show you, living with T is possible and can go back to how it always was, I'm confident that this will be the case. Keep us posted on how it goes.
Hi MattThank you for your lovely message & words of encouragement . I agree you have to claim your old life back & the more you do that you will hopefully push T into the background where quite frankly is where it belongs. I went to visit some friends today & totally forgot about it for 2 hours. Yes I have high hopes for Debbie I’m afraid with my cancer op recently I haven’t been able to put the effort In as much as I would like too , but the relaxation exercises have been my godsend . It’s lovely to chat in here & know we were all once probably in that dark place as I certainly was when T first started & to see that yes there is light & hope at the end of the tunnel . Wishing you well & keep up with your positive posts.
So sorry to hear about all your challenges. Hope you can try to enjoy the wedding. I find the music helps me out immensely and being around other people helps distract me from the ringing. With cancer treatments down the road I cannot imagine what anxiety you are having. Try to focus on one day at a time and fill each day with a small project to help keep yourself busy. Wish you all the best. Many prayers
Thank you elsieadamsYes I have to agree I have tried socialising this weekend. & find it helps so much to stop you thinking about the T all the time . Thank you again for your words of encouragement , everyone is so lovely on here ,
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