My experience of T

[Pink6-]

Hi everyone, my T started following a long phone call (house phone) with a friend in January this year. It was so frightening I nearly wanted to end it all. The next day, I called the GP who didn't do anything except say 'get on with it' basically. I came across the BTA and one person who I spoke to said one thing to me that changed my thinking. She said: I promise you it will get easier and better for you. It was something I needed to hear. I will always be grateful for that advisor on the BTA team.

I've since had great days (mostly throughout the summer) sprinkled with bad days. Interestingly, my son got married in July and we all had such a magical time - the whole event was great and people were so happy and positive. I didn't even know I had T for the three days of the celebrations. Then it came back and over the past month it has been troublesome. I've had a few and only a few odd 'excellent' days and that has been glorious.

The noise changes from an annoying loud and distracting hissing to a fizzy sound which I don't mind as it stays in the head and the ears are not affected (at least I don't hear it that much). The hissing though comes from the right ear (although I had mild to moderate hearing loss in left ear). I've had a MRI and awaiting results. I went to see the audiologist at the hospital yesterday for my second appointment. They really are trying to help people with this condition.

I've got hearing aids although I don't hear any different with or without them but I am missing some of the high tones (apparently). They told me to wear them for at least 8 hours a day and they have programmed in a calm noise to use below any T sounds I hear.

There have been days of late when the T has been bothersome and so annoying that I was also thinking similar dark thoughts I've read on recent posts. I know some of you are struggling but take a moment to consider that technology and science is a living, breathing thing and new technologies will be available one day . It just needs a bright kid to come across it.

I read somewhere that a drug was used for another condition (unrelated to T), but the scientists discovered this drug had a certain compound that worked for T, however, the side effects carried a far greater risk of more serious complications.

I'd like to talk to someone about my T when it is so awful. I live in hope that one day, there will be light at the end of the tunnel.

I think there must be so many pop stars out there who have been subjected to loud sounds that they must be suffering with it. Why can't they pull their money together to help with research. That would be a cause I would support.

Wishing you all well today and take each day as it comes.

a few seconds ago

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[Happyrosie]

You are an inspiration, Pink. Thank you for posting.

Btw, I had a look at your profile. Don’t see too many people with dupuytrens, My husband had it both hands, op after about 20 years. All three of his brothers too - it has a genetic component.

You say you’d like to talk to someone. Get in touch with BTA and mention Befriender. Befrienders are volunteers who suffer from T are are happy to talk or text. BTA staff themselves are - as you know - great!

[Pink6- in reply to Happyrosie]

Thank you for your reply - very positive. I do have a befriender and spoke this morning anyway. I still enjoy chatting to the BTA when I need to as they provide such useful information. Can you tell me the name of the CBT course (the surname is Featherstone?) I believe there is a discount code as well. Are there meds that help when the going gets tough? I've heard that people take medication which helps? Thanks so much.

[Happyrosie in reply to Pink6-]

Sorry I don’t know the CBT course. Maybe BTA would help you there. If you read the BTA website you’ll see a list of possible therapies and their take on them.

As far as specific medication is concerned, this would be for anxiety that T causes and not for T itself, so this would be between you and your doctors. Your doc is unhelpful, so when you speak to the BTA please ask them to refer you to a UTube video made by a GP. This gives you GP insights and also pathway to explore how you might get the help you need. The BTA will know what I mean - it’s on their podcast page which I can’t find at the moment and is the second one down I think. They will know what I mean!

All the best

[TinnitusUKPat Partner in reply to Pink6-]

Hi Pink - Debbie Featherstone runs the 'Tinnitus E-Programme' service, which you can find at her website: tinnituseprogram.org/

[TinnitusUKPat Partner]

Hi Pink - lovely post. Thank you for sharing your experience.

I would echo Rosie's sentiment on Befriending - and I'll just leave this link here, if you're interested: tinnitus.org.uk/forms/befri...

Best wishes

Pat

[doglover1973]

Hello Pink 🙂 What a positive post! It made me smile. My T started on the phone too. I thought there was something wrong with the line .. It sounds like you're coping really well. With good days & bad days alike. Hopefully you'll have lots more of the good days.

[rabbits65]

Thank you very much for your lovely post and story . I couldn’t agree more about the need for research , it’s vital that we up date the times with some massive. Improvement because I know that I am alongside many many others that are suffering unbearably at times.

We must also recognise that. Different people are. Suffering in different degrees, mine is considered severe, therefore people that only have mild tinnitus have no idea what it’s like to suffer this T that’s extremely severe.

Take care Pink

[PGsTips]

Dear Happyrosie.

I read your post with great interest. I suffer with Tinnitus in both ears, very high pitched almost like electronic sounding feedback. I got no sympathy at all from my GP, I used a sound generator on my phone to let him hear the 6Khz scream 😱. I obviously couldn't hear it and I panicked when my GP snapped at me "Turn that off!", I couldn't tell when it was playing or not. But I obviously annoyed him. He basically said that their was nothing he could do and to keep on wearing the hearing aids. His response set me back for quite a while. I started to think "am I complaining about nothing?". When I realised that I could be stuck with this sound for the rest of my life, I started to wonder if I could live with T and if that quality of life was something I could put up with. As I'm sure you'll know it affects your ability to sleep or stay asleep, it makes me irritable sometimes and that's not fair to those around me. It's bad enough having hearing loss, without this constant torture. I know their are other sufferers out there but reading the posts from other people who are going through a similar thing has helped me not feel so alone, just me and my Tinnitus.

I hope that research can help in the future and I'd love to hear about some of my peers also living with T. Why is it hardly ever mentioned? I think an awareness campaign could help a lot of people out there, not feel so alone.

I hope you have a great day and hardly notice your T.

Thanks again for your post, I think I'll start reading other people's experiences now. Now I know I'm not alone and I'm not moaning about something trivial.

🤗XX

[doglover1973 in reply to PGsTips]

Great post PGsTips! It goes to show no one would listen to tinnitus if they didn't have to. Your GP's response says it all. Don't ever think you're making a fuss about nothing. Tinnitus is life changing! There's lots of good advice on the BTA website about how to manage it. You're not alone 🙂

[1966366]

What an absolutely fantastic post! Well written, thoughtful, positive and most importantly inspirational! Thanks for it.

[Yogachamp]

Hi Thank you for this post , I agree with everything you say & I too have good days & bad like you & have to live in the hope that things will get better. Also the point you make around musicians I totally agree & listened to a podcast yesterday were they were looking for some billionaires to invest in research they were doing if they all got behind it then surely a cure could be found . I mean we can put people in space so why no cure for Tinnitus . I hope you continue to have many good days . & let’s keep hoping.

[surreycccfan]

Thanks for the positive post, its good you have got a befriender. I can also highly recommend the BTA support groups for empathy with others with T (if in the UK the face to face ones can be found here tinnitus.org.uk/find-a-supp... (although some are still not meeting due to COVID) alternatively the online support groups are excellent to tinnitus.org.uk/online-supp....

In regards to musicians, yes they have a high propensity for T, the plug em campaign is useful for more info on musicians and those attending gigs, especially around ear protection and safe noise levels plugem.co.uk/