No real understanding of what this is like

[lilliput]

Thankfully T is at a low hum most of the time atm. No guarantee it will stay that way.

Last week was hell. Loud, nauseous. Cancelled one rehearsal with amateur group. Not well received even though weak player. Or maybe because.

Know 2 people who possibly had the same and habituated. Others occasional ringing who seem to think they cope better. One who describes ringing as ringing 🙄 so based on history and temporary hasn't experienced full blown, louder than TV 24 7 frozen and consumed T. For me with nausea. Unable to sleep or function.

Even played masking noise to one friend, full volume on phone and still less loud than T. Still comments like you'll feel better after a night's sleep. I can't guarantee sleep or sound stopping.

Think if non T just had this for a week there might be more recognition of just how hellish and debilitating this is.

[lilliput]

Could set it as a challenge for prize? £1000? for you if you stick it for a week , headphones, £1000 to BTA if you remove them.

Bet many members here would pay £1000 for a week of silence.

[TinnitusUKPat Partner]

Hi Lilliput,

You seem to be struggling a lot at the moment - that certainly comes across in your posts.

We never know exactly what people are going through with tinnitus - some people are more able to detach from it and that can be interpreted as people 'not suffering'. As we have no real insight into what people actually think and feel about situations - we always look at it from a remove - it's entirely possible that other people you come into contact with have gone through a similar process to you and habituated to their tinnitus.

Tinnitus can be all consuming and profoundly distressing - it can also be barely perceptible and something that people experiencing it actively have to scan for in order to be aware of. The tinnitus difficulties that you are experiencing now can improve - it isn't a condition which is in any way fixed or guaranteed to be consistently negative.

[doglover1973]

Hi lilliput There is a lack of understanding around T out there. I believe 12% of people have T but only 1% struggle with it. I used to be in the 12% but now I'm in the 1% after my T got louder . The early days are tough but things do get better - as TinnitusUKPat says. You gradually get used to the sound and - even if it doesn't get quieter - you learn to live with it. Hope you're OK.

[surreycccfan]

Hi, one thing I found extremely helpful in managing my T was to not compare myself to others. We are all unique and this also goes for our T, plus we all have have different internal and external pressures on us and comparing sounds and recovery to others is something I found a waste of energy. Don't get me wrong, I did compare myself to others at first and I remember getting angry hearing folks talking about how they habituated and/or were living well with their T. However, from listening to others who had gone through their 'journey' of living well with their T I realised comparing myself to others only caused me to have unhelpful thoughts especially around measurement of distress and how how quickly it would take to recover. In the spirit of being kind to myself, I shifted my energy away from activities that were not supporting my recovery plan to things that could help (distraction techniques, behavioral tools, support groups, etc.). I hope this helps in some small way.

Stay Safe

[1966366]

I think that if 'non T' has the condition similar to what ours is like for a single day, then that would be sufficient. And I understand that you will be miffed to the comments of friends etc. I still am after many years of having this terrible life changing 'thing'. All the very best

[Suz_2]

yes - I have had the same reactions -i try to explain to my family how severe it is but because they know of others who cope and function well with the T - then they think I am over-reacting - all I know is that I have a severe T and I am very tired every day after poor quality sleep and this is causing high blood pressure and neurological issues , lower immunity etc - I can be distracted and not focus on the T sound too much in the daytime but many times it does distract me and its difficult to function. It seems like early days for you as your T started recently ?

[lilliput in reply to Suz_2]

When mine was really bad I was frozen.Coping a bit better this week but regret trying to socialise. Attended some music rehearsals.But mourning listening to music.

Still able to hear speech but music is over laid with hiss and whistles

[lilliput]

Thanks for the replies and likes. I'm trying to keep my patience and not "go on" about problem in real life.Tbh it is showing me who my real friends are though.

One in particular really winds me up. I've helped her a lot recently; she has had a genuinely hard time but just ignores, changes the subject when any focus, tbh not just tinnitus, is shifted away from her. Cites people she knows with worse afflictions.

So more a relationship problem than a tinnitus one.

Doesn't usually bother me as rarely needed emotional support. She is great in some ways bit of a party girl but doesn't listen or just isn't interested. Makes comments both 1 to 1 and in company which show that.

Have avoided weekly Zooms as too fragile to cope with group she is a member of. One other person today who I hadn't spoken to for a while. Again interrupted, competition on people she knew with bad back etc. V frustrating. Other friend was trying to listen. Mentioned music we like, cannot enjoy that now. Still got hope you feel better next week!

This is why I rant here.

Found conversation with guy who had habituated, 10 years plus with tinnitus genuinely helpful.

[Suz_2]

we all need to socialise and chat with friends - but its impossible for them to fully understand or even be that interested at times - the TOP priority is improving yr life with Tinnitus - coping strategies - have you tried the OTO app with a full range of psychological therapies and ways of winding down before sleep. Attention to diet is very important -reduce Salt, cut caffeine and drink de-caf, cook meals instead of ready meals etc etc - because T is reactive to foods, medications, moods etc etc Certain supplements can help , especially Magnesium. There is a lot to learn about T in the first few months - and about what can help and what doesnt help

[Suz_2]

I developed severe tinnitus in Aug of last year and have spent 6 months learning about tinnitus - BTA website has a very good in depth section about what helps tinnitus and what doesnt, as well as lots of other info. Ben Thompson of Treble Health on YouTube is very good for short, concise videos about all aspects of tinnitus -with Tinnitus you have to put yourself first, above all other activities and commitments

[msspinner]

Sounds like you had am awful experience last week!! I've not experienced nausea with T - I don't know how I'd cope at all.

[lilliput]

Thanks for the replies. Have some ear fullness/ dull ache on and off. So could either be this or anxiety causing the nausea.Find this a very isolating condition. Never would have thought I'd react like this or find it so psychologically challenging.

I just can't cope with or agree with comparisons like X has Y and copes, possibly a bit spiteful. Or you'll feel better tomorrow, probably kind.

Plus the glazing over or changing the subject when I try to talk about hearing test results, possible help re hearing aids. May post seperately on this.

[Suz_2 in reply to lilliput]

i understand how you feel Lilliput as when I was really suffering last autumn I tried to explain to my close family, just how severe it was and debilitating - because i needed to speak about how severe it was , as I was really suffering. Yes the reactions from friends and family can be annoying and disappointing when they just dont understand how much you are suffering - but sometimes they dont know what to say, or say the wrong things. Its not that long ago that I was a 'non T' ( pre Aug 21) and had absolutely no idea that T could be so debilitating and severe

[MOLKO1972 in reply to Suz_2]

I'm the same as you Suz26...I was 'non T' (pre May 21) and had no idea how T would completely affect my life in such a way, that I don't feel like I'm the same person anymore. It has a massive impact on your mental health and wellbeing. Unless you are going through this yourself, then you are just not going to understand how draining it can be on your whole body.

I just have to take each day as it comes and hope that tomorrow is just a bit better than the day before. Not always the case, but I live in hope

[Suz_2]

hi - The T has impacted my life hugely and my general health and mental health - my T developed after a top back of head bump ( although no headaches after ) but i had a mild concussion , apparently head trauma can create a more severe T - my T goes up with general background noise and so I have stopped going to restaurants, large supermarkets and other places and cant even go on a bus or train ( but this may change hopefully) Sleeping has been the most difficult problem and this has led to higher BP and lower immunity - over festive season the T was horrendous especially at night - i thought I wouldnt survive - the volume has eased off a bit since then but still very severe. It has been a nightmare, torture due to the sheer volume of the multi tone constant buzzing. I just live with the hope that my brain can eventually divert from the T sound and habituate to some extent - even if was there all the time at lower volume, this would be bearable

[MOLKO1972 in reply to Suz_2]

My T was also a lot worse over the festive season. I don't know if it was down to the booster vaccine or just the fact that it was Christmas, which can sometimes manifest a level of stress and anxiety.

I have a constant hissing with another tone on top of that. It has doubled in volume since just before Christmas. It only used to be a quiet hiss, which was annoying but bearable. I am glad it is only in the one ear, but sometimes I do hear noises in my so called good ear!

We are all here for the same thing and I can take a bit of comfort in knowing I am not alone in all of this madness!

[Suz_2 in reply to MOLKO1972]

yes Molko - this forum is where we find the support and understanding - my t over festive seemed to worsen after a few noise incidents ( which were not even that loud !) I avoided alcohol as I had already quit the occasional red wine or G&T ( which is not a big loss really) and had some chocs (not that much) I made numerous appointments for the booster (over festive season) but cancelled all of these as i was scared it wld make the T worse - I was taking Zopiclone every night ( for far longer than i should hv done) but havent taken this for 2 months now - sleep was difficult when i stopped the Zoplcn but i pushed thro that and now managing to sleep longer , but some nights not possible. The past 6 months have been the very worst time of my life. - Are u avoiding caffeine and alcohol , reducing salt ? I have found that quitting ready meals ( coz of salt content) and cooking meals with plenty of veg does help. Magnesium and other supplements can help - I am avoiding meds of all types as I think some can make tinnitus worse, but I understand that some people need to take meds - the OTO app for psychological therapies is excellent ( better than an expensive CBT psychologist/ therapist) . I have learned a lot about T over past 6 months and gained many helpful tips from this forum - I expect u have learned a lot as well about T and know what to do and dont do - I can give u more info on any of these dos and donts that i hv put into practice.

[MOLKO1972 in reply to Suz_2]

Hiya...I only ever have decaf coffee and I don't drink tea. I've not had any alcohol in a long time. I stopped drinking well before I started with T. I try to eat relatively healthy and I do a lot of walking to try and keep fit. I too am avoiding meds, as you just don't know what could make it worse.

I have learned so much about T and this forum has helped me an awful lot. I did a lot of research when I first started with T and naively tried to look for that 'magic cure', which clearly doesn't exist. We just have to learn to manage it the best way that we can.

I'm having a loud day today. I have periods of where I forget about it and then as soon as I think about it, it's there again and the volume goes up. I do crave a bit of peace and quiet...I miss it

[Suz_2]

yes its very difficult - I hope the T improves for you - and for all of us