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anyone suffering symptoms or have been diagnosed with 'pulsatile tinnitus' ?

Ktomoph_ profile image
37 Replies

about 3 days ago i became aware that i could hear my irregular and fast heartbeat in my ears. It may have been happening all day but I became conscious of the sound after sitting on the settee and watching a fim in the evening.

The quieter the evening became the more I was aware of it, so by the time I was ready to sleep it was 'loud' and constant. The result of which, being used to almost silence at that time of night, was I could not sleep.

I eventually got up and researched what was the possible cause - which was when I discovered it had a specific name.

I am waiting to chat with GP, but wondered whether anyone else is suffering with this and what,if any, treatment or ways of dealing with it are available......

I have HF, AF, CKD and a number of other lesser issues.

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Ktomoph_ profile image
Ktomoph_
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37 Replies
Rosie1066 profile image
Rosie1066

I hear my heart beat most of the time and if I want to take a pulse reading all I have to do is sit and count the heartbeats that I can hear. Reassuring to know my heart is still beating! I also have Tinitus all the time and have had for at least thirty years but I know that is nothing to do with the heart beat as I have an ear problem which is causing it. I’ve got used to it now.

Ktomoph_ profile image
Ktomoph_ in reply to Rosie1066

thanks for response Rosie.

Yes it is a little bit different to tinnitus, and I am guessing that I will eventually get used to this odd and totally consuming 'noise' at night, but at the moment it is a little worrying.

Rosie1066 profile image
Rosie1066 in reply to Ktomoph_

I have heard my heart beat ever since I had an Aortic Valve Replacement fourteen years ago. You do get used to it.

Hylda2 profile image
Hylda2

I have pulsatile tinnitus as well as ordinary tinnitus but mine comes and goes in volume. After a bout of AF it was nice to hear it beating firmly Had pace and Ablate. Ask your Dr to refer you as you need a brain scan. Luckily I had Ct as have claustrophobic and hate mri scans

Ktomoph_ profile image
Ktomoph_ in reply to Hylda2

thanks for response Hylda

I think it is the lack of sleep because of the 'noise' that adds to the fears and worries as to wondering 'what on earth is happening now'. If thats the case that it comes and goes at least i can catch up on the much needed sleep.

I am currently awaiting call back from GP

Hylda2 profile image
Hylda2

I found I could quieten it by taking some very slow deep breaths

Ktomoph_ profile image
Ktomoph_ in reply to Hylda2

I have just found and read through your post 8 months ago about your pulsatile tinnitus. Interesting reading through - I think partly because I now dont feel so alone with this!

I will try the deep breaths because any help is much appreciated. I will also look at whooshers.com too to see what info there may be.

I note we are taking similar meds - I too am on Nebivolol for my heart failure. I was originally prescribed Digoxin, but after hybrid ablation and then CRT-D device it was changed to Neb.

I agree with the the need for brain scan etc as from what I have read so far there may be plaque build up in the jugular and other veins in this area.......does give me the shivers just thinking about them.

Another article suggested the pulsatile tinnitus could be caused by hyperthyroidism, which interested me as I have been taking 100mg Levothyroxine for hypothyroidism - but my last couple of blood tests suggest that my thyroid is normal.....so amybe the Lvo is causing issues.

Hylda2 profile image
Hylda2

I take 100 Levo too. Pm me if you are worried. It bothered me a lot at first but you can control it. I stopped Nebivolol after pm and just take Dabigatran and a whole heap of diuretics

Di

Yumz199725 profile image
Yumz199725

I wasn't even aware this was a condition I can always hear this in my ears especially when I'm trying to sleep woah 👂😳. I thought happened to everyone sometimes hear it if I stand up to quickly aswell. You can read my rather long bio to find out my heart history 😉.

Ktomoph_ profile image
Ktomoph_ in reply to Yumz199725

it is a little disorientating, especially when it first kicked in. I had a call back from my GP yesterday evening, and as i suspected would be the case, he knows very little about pulsatile tinnitus. He went into detail about tinnitus - which I dont have - and followed this with a brief explanation about pulsatile tinnitus and questions which appeared to suggest he didnt believe that I was suffering this. He eventually agreed that this was pulsatile tinnitus, but had no suggestions as to resolving it or even organising any tests or scans.

I really like this GP, but this is a locational issue - i chose to live in a remote part of the UK when I retired and overtime have realised that I personally have to push for anything to be done health wise🤗

will call the cardiology dept today to see what they have to say...........

Yumz199725 profile image
Yumz199725 in reply to Ktomoph_

Aw so sorry you couldn't get much help at GP. I never even attempted to get help with it because I've had it so long I've had to just live with it and I honestly thought everybody has that same sensation. Really hope your cardiologist can be of more help and actually advise what do or do some tests to confirm maybe.Wish you all the best and take care.

Columbo70 profile image
Columbo70

Hi Ktomoph,

I’m recovering from a bout of vertigo for the last three weeks, and one of the symptoms is a pulsating, whooshing sound in my ears at night time. In my case it looks like it’s related to fluid build up in my middle ear…..waiting to see an ENT specialist. You might need to rule out other, non-cardiac ear issues as the cause. Hope it improves.

Ktomoph_ profile image
Ktomoph_ in reply to Columbo70

thanks for sharing your experience Columbo and for supportive words

Pitt12345 profile image
Pitt12345

yes I get that. When it first came it was almost constant. Now intermittent. Still have the ‘normal’ tinnitus constantly in the other ear. I had carotid artery scan which showed a little narrowing but nothing they were concerned about and a head and neck scan again okay. I was offered masking hearing aids. Normal tinnitus since 1997 and the heartbeat sound began 2 years ago.

Ktomoph_ profile image
Ktomoph_ in reply to Pitt12345

I looked at the site suggested on Hylda2 posts from 8 months ago called whooshers.com which is an American site specifically focussed on pulsatile tinnitus. It was very informative and gave clear evidence based causes and treatments. Amazing.

I think this site added to my theory that the way any unusual symptoms are dealt with by your GP depends upon where you live in the UK.......and with the increased pressure from the amount of patients now enrolled in each GP surgery and much of the focus on keeping a lid on finances, the unusual symptoms generally are ignored as candidates for tests.

But, the whooshers.com site did allay my concerns by confirming it is a known issue; has a name; and can be treated!

Redwing30 profile image
Redwing30

Hi,I get this too sometimes when sitting quietly and also when anxious.Talking to your Gp will hopefully reassure you it's nothing to worry about.Take care.🙂

Ktomoph_ profile image
Ktomoph_ in reply to Redwing30

thanks Redwing....I will speak with the cardiology dept later today just to be hopefully reassured.

gardnerbay profile image
gardnerbay in reply to Ktomoph_

I'll be interested to hear what they say. After being diagnosed with a leaky aortic valve, I started getting pulsatille tinnitus and my cardiologist suggested I should go to A & E to have it checked out. I did and A&E cardiologist did various tests (e.g. neuro tests) and found nothing. They referred me for Ear tests and an mri on ears which also found nothing (reassuring). So am left with it, its constant now for several months. Am hoping that when I have current tissue valve replaced (again, in c. 6 months I've just been told), it might go or lessen. Hoping its not a sign that my carotid arteries etc are restricted. It doesn't keep me awake, its sort of reassuring to hear my mostly 'regular' heartbeat (although with loads of ectopics) but I could do without it and miss the silence!

Ktomoph_ profile image
Ktomoph_ in reply to gardnerbay

thanks for sharing your experience and the tests they did. this will help when I chat with cardiology.

you have obviously looked at possible causes as you have raised the carotid artery restriction - several articles online refer to this, but like you I am hoping that this isnt the ultimate cause. Sometimes I just want to say 'enough now!.....no more needles, pills, side effects and pain.'

I also never ever imagined that I would long for and picture myself sat in a rocking chair in front of a glowing log fire happily chatting to the cat whilst I sit and crochet!....i cant actually see me doing this but it does make me chuckle!

benjijen profile image
benjijen

I have had the usual tinnitus in both ears since my 20s (about 45 years) and cannot stand quiet! I had 3 stents in 2016 and have had pulsatile since then as well. It varies in intensity but I just try to ignore it. Sometimes that's easier said than done! I just keep radio or TV on all the time to distract me (including at night as I live alone). You can also try white noise gadgets. I personally don't find them helpful but I know some people do.

Ktomoph_ profile image
Ktomoph_ in reply to benjijen

thanks for sharing your experience and possible options to deal with it. I think I will probably be able to rest assured once I have spoken with cardiology as the more I read online about possible causes the doubt creeps in.

Lovedogs1 profile image
Lovedogs1

Yes I also suffer from this. I can hear my heartbeat in my left ear all the time. I don’t notice it so much in the daytime but I am very aware of it when in bed. Having said that I must be used to it now because it doesn’t keep me awake.

Ktomoph_ profile image
Ktomoph_ in reply to Lovedogs1

i did wonder whether I would get used to the noise at some stage, so thanks for sharing that.

ETHEL103 profile image
ETHEL103

Yes I have this too started recently.Im sure you will get some helpful responses.I will read with interest.

Stoer profile image
Stoer

I have tinnitus (not pulsatile) and go to a British Tinnitus Association support group. People with all types of tinnitus attend it - and when we're on Zoom, people from all round the world join in. I attend a private audiologist who specialises in tinnitus and have had great treatment. I did try the NHS first, but after having had an initial appointment with an audiologist and a brain scan, was discharged by a consultant who had never seen me! Look up the British Tinnitus Association's website for lots of good information and help. All the best!

Ktomoph_ profile image
Ktomoph_ in reply to Stoer

hi Stoer thanks for responding and for sharing your experience.

When this ‘sound’ started and wouldnt stop, and was so loud and invasive it really bothered and worried me. If I was perfectly healthy I would probably have not thought anything too much about it. But having heart failure, the return of atrial fibrillation, CKD, and now showing issues with my liver, gallstones, difficulty breathing and having to sleep almost upright, oedema, and reaction to some medication, everything that happens outside of normal concerns me - probably more that it would normally do.

My heart is currently racing as the CRT-D device I have needs adjusting again, and the AF adds the strange and very noticeable random jumps, so the sound of my heart magnified within my ears was not the beautiful and soothing rhythm that we hear when listening to a foetus - it was a scary sound.

I really appreciate the way in which the site whooshers .com have written about pulsatile tinnitus - They say it is important to learn ‘what it is’ and ‘what its not’, and that often in any mention of 'pulsatile tinnitus’ the focus will stop at ’tinnitus’.

Pulsatile Tinnitus is not the same as tinnitus.

Unlike ‘tinnitus' sufferers I dont hear a ringing, high pitched whistle, buzzing, hissing, clicking or roaring that only the sufferer can hear. With 'pulsatile tinnitus' the sound I hear is the sound of my heart beating/pumping, the sound of which is magnified and being transferred through the veins and arteries leading to the head. Unlike ’tinnitus’ it is possible for the GP to also the ‘pulsatile tinnitus’. 

The concerns that this new symptom has raised is, I am sure, related to the noticeable changes in my heart health and a need to understand whether it is a random happening or whether it indicates something that needs looking into

- but mainly its great to hear from other suffers and how they are coping, plus all the advice on how to live with it.

Stoer profile image
Stoer in reply to Ktomoph_

The British Tinnitus Association (now known as Tinnitus UK) covers ALL forms of tinnitus, including pulsatile tinnitus, and people with pulsatile tinnitus also attend the support group I attend. Originally my tinnitus took the form of persistent loud banging noises, as if in time with my heart beat. This drove me round the twist, kept me from sleeping and raised my anxiety levels no end! With treatment, the noise presents itself much quieter. I have read quite a bit about the different types of tinnitus, including pulsatile tinnitus, as I felt that knowledge would help me cope. I hope that you get the treatment you so need.

Ktomoph_ profile image
Ktomoph_ in reply to Stoer

thanks Stoer for clarifying this. Its all new to me but I am reading as much as I can in an effort to understand what is happening as generally this helps me focus on the 'culprit' and then be able to hopefully deal with it

Engineer46 profile image
Engineer46

If you normally sleep on your left side, you may find the heartbeat less noticeable if you sleep on your right side instead.

TMeditation profile image
TMeditation

I have had tinnitus for some years and when I started hearing my heartbeat in my head I looked it up and it said pulsatile tinnitus, so for a while I did nothing. Then I read a report that suggested I get my doctor to check it out for a heart murmur. Now when you visit your GP make sure he listens to your neck and not just your chest. It’s in the neck that mine detected the murmur but he only did that because I suggested he try that after I’d read this online. I had an AVR 3 months later. Of course yours may not be anything like this but do get it checked out. Good luck. Sue

Ktomoph_ profile image
Ktomoph_ in reply to TMeditation

thanks Sue for this info.

From what I have read so far - and now backed by what you are saying - it is something to do with the arteries in the neck and going into the skull that possibly get clogged with plaque or generally narrow with age that appear to be the main cause of this.

I am obviously hoping it isnt anything serious, but after everyone's input on this site I now feel able to explain and discuss the issue with the cardiologist without being too vague!

Silvertail profile image
Silvertail

I have had tinnitus since 1979. I discovered scarlet fever had caused nerve deafness in one ear. Then noise of a jackhammer and roadworks in front of our house caused the tinnitus in my deaf ear. It drove me mad at first but I’ve learned to ignore it and forget about it most times.

Ktomoph_ profile image
Ktomoph_ in reply to Silvertail

wow....sorry that this happened to you.

The world is definitely a noisier place than it was meant to be and does affect most of us in some way or another.

I intentionally moved to a quieter place when I retired, so do find it difficult if I have to visit towns and cities - but I try not to anymore!

Persevere99 profile image
Persevere99

Hi

It’s the rating you give your pulsatile T that’s the key to how you feel about it.

I rated my T as 50 or so for many years and had to take benzos to get to sleep.

Then, 5 years ago, my rating dropped to 0 and…..no more benzos to sleep anymore, as I now count myself so lucky to just have T to deal with, when it could be 1000 times worse.

Please read my own T post to see how I did it.

All the best!

Persevere99

Ktomoph_ profile image
Ktomoph_ in reply to Persevere99

thanks for your response and input.

i did notice a slight drop in how loud it is last night so I have hopes of it dissipating.

Maderia profile image
Maderia

yes I have ringing in my ears all the time and can sometimes hear my heart pumping. I had mitral valve replacement 2 years ago and also AF afterwards. I am not in AF now but I am being treated for a fast heartbeat and taking betablockers,statins and water tablets. My doctor does not seem to bothered with my tinnitus and you do get used to it as time goes by.

Ktomoph_ profile image
Ktomoph_ in reply to Maderia

thanks for sharing your experience of this Madeira. It all helps with my understanding of it.

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