Wish I could meet up with people who have severe T 24/7 in real life!

[jasmineam]

No one I know has T. There seems to be tumbleweed floating past. The only time people fully understand and can be fully supportive is when they have it, but I don't want that either. No one deserves T.

I read on a study that 10% of people in the UK have T, but of those, only 1% have severe T. I am definitely one of the 1%. This study was based on self report, so it is definitely valid and the sample was large so it is also reliable. Wish I had saved the link, or emailed it to myself.

[Hidden]

Sorry you are struggling so much. But I wonder what exactly you mean by severe T? Only we, as those living with it, can quantify its severity so I think it’s a very personal matter how we are affected by our tinnitus?

For me personally, I live 24/7 with a very high pitched ring. I also have pulsatile Tinnitus where I can hear my pulse through my ears - particularly at night.

But I have multiple sensory disturbances as part of several autoimmune diseases affecting every part of me and there is nothing I can do about this. I listen to mindfulness app called Calm at night and use white noise aids sometimes - when I can face the itching they cause.

So is my tinnitus as severe as yours? I really don’t know. I’m not as severely affected by it as you it seems. I was when it first started a few years ago.

But now if I had to decide which of many many awful sensory symptoms I’d give up then tinnitus would be probably about fifth or sixth on my long list - but that’s not to say it isn’t awful. It’s just that we all have different causes, tolerance levels and different rubbish we have to live with. Some might not be aware of their tinnitus at all where others are deeply distressed by it. If you’re badly affected then it’s severe for you.

[NicTinnitus]

Hi Jasmine

If you would like to meet others with tinnitus, we do have a network of nearly 100 groups around the country - you can find out more here: tinnitus.org.uk/find-a-supp...

We also run regular full day events around the country - the next ones are in Norwich and Gloucester, if you are near there.

Finally, we are having a Tinnitus Expo in September in Birmingham - we'd love to see you! tinnitus.org.uk/Event/talki...

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)