My journey with pulsatile tinnitus

[Upbeatmap]

Hi all

I’m 20 months into having pulsatile tinnitus and thought I’d share my journey as it will hopefully give hope to those who are just learning to deal with it.

I developed it after a plane journey where I had a lot of pain in one ear as we were landing - something I’ve never had before. I also developed a whole bunch of other symptoms but the PT was the hardest to deal with as it moved to both ears, never stopped and was very intrusive.

In the early days, I couldn’t contemplate how I could possibly live with it which was very distressing.

I was eventually diagnosed with SSCD which led to 3 fairly big operations which were, unfortunately, fairly unsuccessful and did not resolve the PT. I now have it 24/7 in both ears and much louder when my pulse is faster, or I’m lying down.

After seeing the UKs leading consultant on SSCD where he told me that there was nothing more that could be done, I decided I just needed to learn to live with it. Desperately searching for a cure was not helpful so I switched focus to living with it.

These days, I only really notice it when I’m thinking about it or it is very loud and I use Bose Sleepbuds to distract my brain when sleeping. I have a bedtime routine, putting my phone down and reading until I feel tired and I can now sleep as well as I did beforehand: possibly even better.

I’ve come to terms with the fact that it is probably never going to go away and will always be part of my life.

From what I’ve read, most sufferers are not going to be cured so focusing on adapting and living with it is probably more helpful than chasing a cure that is not there. While I still find mine annoying, I no longer find it distressing and it is now just part of my life.

If you have recently developed T and are finding it really distressing, hopefully this will give you a little bit of hope that, in time, you will adapt and it will slowly move into the background and become just an annoying part of your life.

[Happyrosie]

upbeatmap, thank you for this! I hope this post is widely read within this forum,

[Hylda2]

I too have adapted to my PT. If it really annoys me I find calming breaths help me

[Happyhouseplants]

thank you so much for this post. I really needed it! I’ve only had T for a month and sometimes I feel very overwhelmed with it. It’s hard to imagine getting used to it but I know people who have and your post reminds me of that. Thank you

[Upbeatmap in reply to Happyhouseplants]

Hi Happyhouseplants

I’m glad you found my post helpful. It is definitely not easy and I know how desperate someone can feel when there is no escape from tinnitus. I’ve had times over the last 18 months where I wanted to pull my hair out but, gradually, I’ve found more and more times when I’m not even aware of the noise.

Getting good sleep was a big part of it for me as the T is worse when I’m tired and everything is harder when you haven’t had a mouth sleep. That’s why I’ve worked hard to build a routine that allows my to sleep pretty well most of the time.

Take care

[Happyhouseplants in reply to Upbeatmap]

I’m going through moments of this is manageable to moments of despair. I’m definitely better when Im distracted and engrossed in something but it’s hard to concentrate on the tv or computer work, etc.

I’ve always loved my sleep and I’m finding it’s a break from the tinnitus. I should get a bedtime routine like you say. Last night I stayed up late and my tinnitus was so loud.

I only know of two people with tinnitus. I don’t feel I can keep asking them questions about it so it’s nice to hear how well you’ve done.

[Ravks]

Hi Upbeatmap

This post has come perfectly, I am at a point where I can't cóe with this new loud intrusive sound that appeared twice for short period alongside the usual ringing which I have got used to.

This new noise is like a steam train 🚂 best way I can describe it. It's loud. Woke up now at 4am to it, it's settling but so distressing that I think how can I go on, I have young kids that I have to live for who need me. So I get up normal pretend all is ok but inside the fear and panic consumes me when the new sound appears. Don't whether this new sound is PT just thudding steam train is how I can describe it.

Your post is very uplifting glad you have got through it and have given hope appreciate you sharing it with us all thank you 🙏🏽💜

[PTNewbie]

This is where I’m at with my PT. Started a couple of years ago but recently become so loud and sometimes I cannot fathom having to go another hour of hearing it. It’s really getting me down. When I’m working and busy I don’t notice it, so it’s definitely a mind over matter aspect to it aswell. I have an upcoming CT scan and audiology.

Really hoping there’s something identifiable that can be treated, but at the same time worried it’s something sinister. I’ve learnt very quickly rarely associated with brain tumour. I think I’m more worried as my dad had tinnitus and he died with a Glioblastoma in 2020. Reflecting the last few years have been mentally very tough so it’s no wonder I have it and I’m struggling with it. These threads are very helpful and reassuring. Really trying to rationalise my own fears as I know this doesn’t help

[tso01gvh]

Thank it. Its what I needed to hear