I've had permanent multi tonal tinnitus in both ears for around 17 years now which i got standing in front of a guitar stack at a gig (yes I really was that smart) and although I've had slight flare ups here and there I'd pretty much adapted to live with it until now.
I was walking near a main road and all of a sudden my tinnitus blew up louder and crazier than I've ever had even in flare ups. I have all these different tones and what can only be described as crickets in my brain on top of it. My right ear is also pulsating like crazy at any noise. At this point it's not possible to function at all as it's so loud. I also have mental health issues which led to me unravelling and ending up in A+E. I've thankfully had my mental health team all over me getting me stable but this tinnitus is absolutely insane and completely dismantling all the work I'd put in getting myself together over the years.
I'm here seeking solace and hopefully some support with others who are dealing with this god awful condition.
Hopefully this level is temporary or my brain adapts. Any advice dealing with huge flare ups would be so helpful right now.
Hope you're all dealing well.
-Chris
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Am3ient
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Oh Chris that’s so hard for you. That’s the absolute joy of having T. He (I’m afraid it is a he, to me) creeps up on you when you’re not expecting it and taps you on the shoulder and giggles insanely.
I think of him as an unwanted irritating imp.
I expect you’ve had a look at the British tinnitus Association website ? Have another look at their training module “take on tinnitus” and think about controlled breathing techniques
I'll definitely check out the "Take on tinnitus". I've been working on my breathing a lot recently and it really has been helping keep the anxiety down a bit.
Hi Chris. That seems like a difficult situation to find yourself in, so all credit to you and the mental health team for supporting you in a traumatic period.
I won't intrude on the good advice and information which our community offers freely, save to say that tinnitus spikes/flare ups can often be driven by one-off events or by periods of heightened stress.
They don't have to exclusively relate to exposure to noise - if anything in our lives has had a significant emotional impact on us, it's entirely possible to go through an increase in tinnitus levels for a while if our levels of energy or resilience are diminished.
Best of luck with things and thank you for posting your story.
I have been under quite a lot of stress the last year including a severe lack of sleep. I was actually hoping it was related to stress as there would be a possibility of it settling down or at least my ability to cope would be higher.
Hi Chris, sorry to hear about your situation. Its good that you have good mental health support as I know for me when I was in crisis with my T, I found counseling and tools I learnt in CBT really helped my mental health but also gave me a foundation to start taking control away from my T.
In regards to flare ups, what do you have in your 'toolkit' do you currently use to manage them? As I knew the distress caused by flare up was an emotional fight/flight reactions I would use a combination of the below:
• CBT Tools - 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 behavioral 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
• Progressive Muscle relaxation exercises - See above bullet
• Video Gaming – Finding a hobby or activity that really makes you focus on something was really useful. I found online video 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 centered and grounded when I was struggling e.g. 'this will be pass', 'my plan is to manage my T not manage me and I have already made progress so I know if I stick to my plan then although I have this spike I will begin to more forward again'
• 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 behavioral 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
• 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 our 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 behavioral techniques which I know had worked for others with the condition so if I just stuck to the plan things would get better.
This community is great but if you feel you need to talk to someone you always have the BTA helpline (0800 018 0527) which is great (plus they are now doing a Wednesday evening event where it is only staffed with volunteers who have T healthunlocked.com/bta/post.... I found attending a BTA support group was great for learning about the condition, learning management techniques and support/shared empathy from others with T (tinnitus.org.uk/online-supp....
Thank you for the In depth info. There's certainly a lot for me to get my teeth into there. Having had tinnitus for quite sometime so I've certainly used a few of these steps over the years but haven't heard of the Apple model. I really appreciate the input and support. It's helping me get into a more proactive and positive mindset.
Hi, no problem at all. I learnt the APPLE technique when I did CBT, I have attached a screen shot of the hand out I received on APPLE, I found it useful in relation to 'unhelpful thoughts' and 'rumination & worry' as these were the cornerstone of me living well with my T.
I was referred to CBT by my GP but you can self refer through the NHS (if you are in the UK) here nhs.uk/mental-health/talkin...
Hi Chris. So sorry to hear of your struggles. You've got some great advice here already so I don't know there's much more I can add .. Just to say the same thing happened to me in July 2020. Manageable T went thru the roof and I struggled to cope. 18 months on I'm coping OK with the increase in volume thanks to the BTA, the forum & CBT . I hope you feel better very soon .
Keep going Chris. You'll get there. It's only a matter of time before your T settles and / or you get used to it again. The brain is a wonderful thing.
Hi Chris so sorry your T has escalated I didn't know you could have such bad flare ups. I struggle with vertigo as well as T and the vertigo is worse for me than the T at the moment although I probably shouldn't be tempting fate by saying that! Anyway you had some great advice on here I agree about trying mindfulness I have been trying this for the last year and it is very helpful.
I like a guy called John Kabbat Zinn he's on YouTube his body scan is very good and very calming and there is a choice of 30 or 45 mins. He also does meditations of various lengths ie 10 15 or 20 mins. I find both of these techniques helpful for relaxation which then helps with feelings of anxiety and depression.
I do one of these every day. I find the T fades into the background during the body scan and I feel very relaxed after it although he says to stay awake during the body scan I find it helps me drop off to sleep so I often listen to it at night for that purpose as my T is worse at night when I'm trying to get off to sleep. I use the shorter meditations in the morning.
I hope your T eases up soon and your mental health continues to improve. These conditions are so draining mentally as well as physically all the very best to you feel better soon.
Thank you for the supportive message. I'm seeing these body scan suggestions come up quite often. I'm going to spend some time checking them out. Any relief i can get at all will be a blessing.
HiThere's nothing to lose by giving it a try and there is a lot of meditation/body scan/sleep hypnosis on YouTube.
I think you just have to find the right voice that sounds calming and comfortable for you so that you can just listen and totally relax to the sound of that voice and then it's quite immersive and the tinnitus fades into the background for a while.
I tested quite a few before I found a voice that worked for me.
Hello! I have been with Tinnitus for 2 years. I'm trying homeopathy, Idebenona, threonate magnesium, I sleep with my head slightly up. Something of this es helping a little. I'm always looking for newness that could help with this madness. Did anybody hear about Ototech?
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