Always welcome your thoughts : Dear empathetic... - Tinnitus UK

Tinnitus UK

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Always welcome your thoughts

Verma54 profile image
25 Replies

Dear empathetic friends

I am so glad am on here as I have realised I am not going mental. So many posts relate to my experience. It’s very hard as each day is variable and some days just have to keep going...sleeping is tough waking early ...I pray of the light that this will get better and any reassuring advise on coping is always welcomed ...

Ps just tried hypnotherapy. Was great for 2 days but the Tinnitus beast doesn’t want to go

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Verma54 profile image
Verma54
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25 Replies
11thofApril profile image
11thofApril

Hang in there bud. I'm about 5 months in with the T and it has been a rough ride. The hardest part has been the sleep issues but I am slowly making progress. Have been on sleep aids for about 2 months, the last month on a half dose and now almost feeling confident enough to go off them altogether. It does get better. My personal list of what seems to have helped the most would be something like this:

a. Yoga Breathing exercises, especially Brahmari and Ujjayi pranayam.

b. Electroacupuncture. I found regular acupuncture to be slightly beneficial, but electro-acupunture was where I found substantial relief.

c. Nightime supplementation with Magnesium, and sometimes melatonin. I hate the thought of using Zolpidem so I don't take it every night and use magnesium taurate and melatonin instead. Works really well for me. A few nights of good sleep makes everything better.

d. Get some CBT for insomnia and tinnitus. I signed up with an online site called Sleepio who accepted me to join their free online CBT program for insomnia. I realised that I've had sleep issues for way before the tinnitus.

e. I've just started so can't say for sure, but Bowen therapy seems to be of benefit.

In some ways the tinnitus is forcing me to change for the better. I have become calmer, been handling stress much better and genuinely feel that I am becoming a stronger version of myself. I still have a long way to go but am confident that I will come out of this, as will you.

Verma54 profile image
Verma54 in reply to11thofApril

Thank you for the advise and in particular the yoga. You’re clearly on a mission to succeed and best of luck mate

Verma54 profile image
Verma54 in reply to11thofApril

I have enrolled on Sleepio. Thanks for the suggestion. 👍🏽

Verma54 profile image
Verma54 in reply to11thofApril

Am impressed with your recital of yogic breathing ...my class has been shut for a month and so looking forward to it ...

Michael8272 profile image
Michael8272

Hi, hopefully someday a cure will come,it is a absolute torture, the scary part is you don't know what's around the corner.i on Sunday was out walking and out of know were my left ear went so loud I couldn't hear and it went on for one hour and I still haven't worked it why.i'v 30 second blasts like this now and again but never one that lasts so long.it is such a scary condition that nobody really knows much about in the medical world.hang in there and hopefully someone will save us all from this.

Verma54 profile image
Verma54 in reply toMichael8272

It is torture and each day is a mission ....I have had 25 sessions of CBT but the beast still affects me ...am hopeful as wel 🙏🏾

Verma54 profile image
Verma54 in reply toVerma54

What gets me is my life evolves around T and wish to get my life back. Ideas

dsh2358 profile image
dsh2358

Hi

I too thing T has a mind of its own

Never know what the next day will be

Scratching sound , ringing loudly.

Hissing. Just horrible my medication I’m on

Keeps it kind of manageable but we all know it’s here to stay until they do more research and the pharmaceutical companies stop thinking of how much money they can make for a cure !!

It’s funny we cannot buy or find silence now i understand when they say

Silence is golden !!!!

DSH🇺🇸

Verma54 profile image
Verma54

So true. Does medication help or is it anxiety suppression

Vibe19 profile image
Vibe19

Interesting to read your experience of hypnotherapy. I debated it when I first hit no sleep 6 months ago. I have recently switched from low dose zoplicone to low dose mirtazipine. No impact on tinnitus but my balance at night has improved - which means that I feel more relaxed as laying down is more restful.

I have introduced vitamin supplements - magnesium & iron-vit B - too early to say if these are making any difference.

My tinnitus is constant with sudden loud spells that I suspect are hyperacusis. Mindful walking is my go to - focus on the breeze felt on face - impact of feet on floor - and scenery. Started attending monthly practice again and company makes a difference when I find meditation hard. If I am immersed in something than T fades into the background...so keeping busy and making plans.

I am attending the tinnitus expo in London to explore other options.

Verma54 profile image
Verma54 in reply toVibe19

Hello Vibe. You have some interesting ideas and will try MG and ZN and see as well.

I also find walking helps...I just wish I could get my head straight ...my wife and son are in Dubai because I don’t think would enjoy it because of my T...mad isn’t it letting this noise do this ...time will tell and just a matter of keeping positive ...

Joeb17 profile image
Joeb17

Now how you feel 24/7 T over 5 years now .i thought I was going mental and my memory going but since post here what’s happening with me I have found that it is not just me T seems to affect your mental state.hope yours gets better

Verma54 profile image
Verma54 in reply toJoeb17

It’s natural it affects mental state as it’s in one head...I used to cope well but am struggling ...waiting for that habituation phase ...

Verma54 profile image
Verma54

It’s just it makes me 😞 as feels like a fight to stay sane when at times you just want to give up ....it’s only a bloody sound in my ears but as it’s intrusive it impacts on my daily life ...I am sorry and may come across weak but I do try to stay positive but it’s not easy

Jimmuck profile image
Jimmuck

An audiologist once said to me about my tinnitus " It's only a noise in your head....it won't kill you". I hasten to add she didn't have tinnitus herself or she would never have made that statement. Yes it's only a noise but it's an intrusive, debilitating noise that sucks the pleasure out of everything we do sometimes and most of us who have the condition, have it 24/7 without respite. I have had it almost three years now and I think what depresses me most, is the unpredictability of it and having no control over it whatsoever, so you're not alone in the way you feel and you're certainly not weak. It's bloody hard work trying to motivate myself somedays when it's bad, when all I really want to do is shuffle off back to bed and try to sleep for another few hours. I try to stay positive as getting stressed and down about it only makes things worse and I am very fortunate to have a very understanding and supportive wife who can read me like a book! I don't think I have habituated yet although some times, If I keep my brain distracted, I can block it out without realizing it and it's only when it comes back once I stop, I realize I hadn't heard it for a brief spell, so I must be making progress and eventually you will get there too. Hoping you find some peace soon. Best wishes.

Verma54 profile image
Verma54 in reply toJimmuck

Thanks Jim for the warm reply and assurance that am not a weak person

Verma54 profile image
Verma54 in reply toVerma54

It doesn’t kill one but when one is at a low ebb it debilitates

Pixie56 profile image
Pixie56

Hi Verma54

I have been reading some of your posts. I have only had this horrible thing for a few weeks but for 24 hours a day. I have been reading how you have all had it for so long and I just don’t know how everyone manages. I feel like I want to escape from my own head! I have always had migraines but for some reason this tinnitus came from nowhere along with Ménière’s and earache. But reading all your posts is a comfort and makes me realise I’m not on my own

Verma54 profile image
Verma54 in reply toPixie56

Yes wanting to escape is common ...tinnitus breeds anxiety and then the neutrons go wild and more perceived noise...hence why they say relax to calm the neurone (brain signals) ...it does work but does when you least expect. When u forget

Verma54 profile image
Verma54

Hello Pixie. You’re not alone and once you get used to it one copes. I wonder as well how people do it but they do! It’s tough to manage especially when you haven’t slept but life goes on...I have had it since 95 but normally goes and did for decades until 2016 and then back in current phase Oct 2018. Key is to stay positive and you’re not alone in going mental ...take care

Pixie56 profile image
Pixie56

Thank you.. it does help to know there are others that understand as although I try and explain to my family what it’s like it is very hard for them to know what I am going through. Yes I’ll try and be positive, if everyone that I’ve read on here can manage it for all these years I’m sure I can 😊

Verma54 profile image
Verma54 in reply toPixie56

I hope you’re ok and coping 🙏🏾

Verma54 profile image
Verma54

You will am sure but it takes time...also it’s very

Verma54 profile image
Verma54 in reply toVerma54

Personal so don’t expect we all have same symptoms ...My wife doesn’t realise the impact as i try hard to continue but she does realise that I avoid a lot ...cinemas, noisy restaurants and others that may spike it...I am 🙏🏾 That it will be fine

Verma54 profile image
Verma54

No one knows unless they have T so fellow s here are best but remember it does get better when you’re positive and truly does go away as you forget

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