New to this group: Hi everyone, I... - British Tinnitus ...

British Tinnitus Association
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Royal-blue
Royal-blue

Hi everyone, I suffer from high-pitched pulsatile tinnitus in both ears. I have had it for around 12 years. I was seen by an ENT specialist who put it down to stress. The only advice I was given was to avoid stress! My job is a Neonatal Nurse Practitioner- no stress there then! 😂

I have a pretty calm demeanour generally.

I have more or less learnt to live with my tinnitus. However I would love to hear the sound of silence again but I know that is highly unlikely. I love the outdoors, walking in particular. I love when it is windy and all I can hear is the wind rustling through the trees - that’s my silence from tinnitus.

17 Replies
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BTAPat
BTAPatAdministrator

Hi, Royal-blue - welcome to the BTA forums. I hope that you find it a supportive and helpful space to discuss tinnitus and share ideas for managing the condition. There are a lot of people here with tinnitus which originated for a number of different reasons and I'm sure they'll be happy to share any tips or advice with you.

Well done Royal blue for not letting it get you down. Personally I deal with it mostly by ignoring it. It’s there, it’s not going to go away, it’s with me for life.

You’re a woman after my own heart - listening to the wind in the trees (or in my case yesterday afternoon on my walk listening to the rain in the trees!).

I found that hearing aids helps slightly, if you need them anyway.

Until the recent COVID thing I had various Voluntary jobs keeping me occupied, so I was too busy (when working) to bother with the big T. Since COVID I haven’t been allowed to perform these duties, as I’m over 70 - until today! Hooray, I was allowed to work for my local foodbank. Whilst working, the T disappears. Hooray again!

Keep in touch, you never k ow what might appear!

Lovely to hear that you are back out and helping at the foodbank! Being busy at work or with day to day things certainly helps you to ignore Tinnitus!

Hi RB and welcome to our happy band! You sound like a very positive person and your post will be music to the ears ( pardon the pun!) of people who have this dreadful condition and struggle to cope with it. Mine is so loud most days, I could stand beside a brass band and I could still hear it above the music! Oddly though, if I listen to the bagpipes, it seems to resonate with my high pitched head noise and kinda cancels it out. Just as well I am Scottish!

Best wishes

Jimmuck

Royal-blue
Royal-blue in reply to Jimmuck

Oh how I also like the bagpipes - I’m also Scottish 🏴󠁧󠁢󠁳󠁣󠁴󠁿

Let's head for this years World Pipe Band Championships then and we can both have a days peace! Alba Gu Bragh 🏴󠁧󠁢󠁳󠁣󠁴󠁿

Hi Royal -Blue, I too suffer from pulsatile tinnitus. I've had this (24 / 7) for 14 months, I've had an mri / mra head scan, a carotid ultrasound scan, a CT Temporal Bone scan and a hearing test, all of these have shown nothing abnormal. Fortunately I usually only hear the pulsing when it's quiet, it sounds just like a heart beat, thump, thump, thump. I can vary the loudness of it by moving my head left to right or up and down, I can even eliminate it by lying flat on my back on a bed without a pillow, I dont know if anyone else has something similar but if so, I'd love to hear from you. Cheers

Hi DownUnderInAus,

Mine is not affected by my position at all. It gets louder if I am unwell though.

I suppose it’s all about learning to live with it and not letting it control your life.

Sounds like you know yours well which helps you to manage it.

1Dar
1Dar in reply to DownUnderInAus

Hi to Down underinAus ... first of all , how nice to finally see a comment from Australia , I live in WA. I have had tinnitus for four years now after a botched up operation on my ear when having a grommet put in. Seven operations later I still have shocking tinnitus and now onto my second cochlear implant. I also have pulsatilla tinnitus mainly when I’m walking ....I’m getting used to that now. I have hyperacusis as well, but that can be controlled with the cochlear . You are the first Aussie I have noticed on this chatline ... I don’t feel quite so alone now! Keep in touch.

Cheers. Jenny 😊

DownUnderInAus
DownUnderInAus in reply to 1Dar

Hi 1Dar, I'm east of you, in Adelaide. Your operation outcome sounds terrible. I've had pulsatile tinnitus in my left ear for just over a year, I also have hyperacusis (i've had this for as long as I can remember), and I have now developed normal tinnitus in my left ear too (buzzing 24/7). I'd like to hear a bit more about your pulsatile tinnitus e.g. what it sounds like, one or both ears, what reduces it or aggravates it etc, Bye for now

1Dar
1Dar in reply to DownUnderInAus

Hi .. it’s so good to be able to communicate with another Australian ! I’ve had a really horrible journey ,, I will try and message you privately if that’s okay or can I message you privately through Facebook? I keep forgetting how to message people privately on this chatline . Let me know what you think. Jenny 😊

1Dar
1Dar in reply to DownUnderInAus

I just tried to message you through this chatline but it didn’t work , can I try messenger on Facebook ? Jenny

DownUnderInAus
DownUnderInAus in reply to 1Dar

Hi, I'm not on messenger or Facebook..,

Hi Royal-blue, I started with high pitched ringing in my left ear about 6 months ago, waiting for a ENT appointment at the moment. I try to keep myself busy to take my mind off the ringing noise, and going out walking which helps when it is windy, would love to sit in a room in silence. Glad to hear you have learnt to live with your T, hope I can do the same soon.

Hi bantams,

I suppose when you have tinnitus- you have no choice in the matter. I’m lucky in that I’ve managed to not let it bother me as I can’t change it. Don’t get me wrong, there are days where it drives me crazy. But walking helps and also knowing that you’re not the only one with the condition...

Hi Royal-blue, may I ask what you hear? My pulsatile tinnitus was like a babies heartbeat on an ultrasound, something you will be familiar with! I had mri, then ultrasound of the carotid. MRA revealed a dural arteriovenous fistula which ultimately was embolised and the PT disappearedimmediately. Unfortunately, and with all due respect to the medical profession, not many medics and indeed ENTs understand PT. The scan results will only be as good as the person viewing them. There are so many people with PT who have been told there is nothing abnormal on the scans and they should 'live with it'. PT is not tinnitus, it usually has an underlying cause, often vascular and it requires a full work up by someone who understands it.

Whilst many of the coping strategies for tinnitus will help a sufferer of PT that is where the similarity ends. This site has plenty of advice but also check out the whooshers webpage & facebook page. Hope you get relief soon.

Royal-blue
Royal-blue in reply to JEHSPORT

Hi Jehsport,

I hear a high pitched sound that pulses with my heart beat - I think of it as thousands of pins and needles pulsing in my head. It’s hard to describe!

Because the sound was equal on both sides I was told I did not need any scans or MRI.

Will check out whooshers.

Thanks

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