Hi! I’m a 70 y/o female and was diagnosed with Afib a year ago. I have had PVCs, PACs, SVEs since I was in my 20s. Bad thing is, I am aware and can feel almost every single irregular beat. And now, with pulsating tinnitus which I’ve had approximately six years, I can HEAR every single irregular beat! The sound I hear with my tinnitus is like a white noise or constant crickets chirping and now that I have Pulsating Tinnitus I hear every beat as a faintly crashing symbol. I mentioned this to my ENT and my Cardiologist but they don’t seem concerned or offer any help. I’m wondering if anyone on here has pulsating tinnitus and if there is anything that can be done to alleviate listening to my heartbeat all day as some days I feel like I’m going crazy.
Pulsating Tinnitus : Hi! I’m a 70 y/o... - Atrial Fibrillati...
Pulsating Tinnitus
I have bad tinnitus and nothing gets rid of it. I am thankful I do t get the pulse as you do. I find when I am distracted doing things or listening to radio during the day I can keep it in the background and at night I put headphones in and have the radio on low all night which helps.
Thank you so much for your response. Yes I do notice when the TV is on and music is playing I don’t notice it as much unless I think about it. Sometimes it doesn’t matter how loud it is I can still hear it. It’s a horrible thing to have.
It really is the worst thing.
ENT gave me hearing aids (hearing is fine) with a tinnitus setting which I can switch on and off, I chose gentle wave sound and it does work.
Hi! Can you explain to me a little more about how the hearing aids work? I have thought about trying them but don’t understand how putting more sound into my ear can drown out the tinnitus. When I went to an audiologist he didn’t seem to understand what the Pulsating Tinnitus was and he couldn’t guarantee that hearing aids would take that problem away. So I have put the hearing aids on hold for right now but would like to know how they work for you. Thanks!
They are normal hearing aids with the added tinnitus function, there are a range of sounds to choose from when they are set up and the tiny button on the aids which controls volume also switches the sound on or off.I have waves sound and I only need a low volume to distract my brain from hearing the tinnitus. You can’t wear them at night but for daytime use it’s well worth trying them.
Thank you! I believe hearing aids may be worth giving it a try. My audiologist told me if they don’t work I can return them and there’s no charge so I guess there isn’t a reason why I shouldn’t try them.
Reading your answer may make a huge difference to me thank you. Can you tell me a bit more about the hearing airs is there a technical name for them or a brand name. Many thanks
I have behind the ear Oticon aids with Bluetooth, their website gives info. I got mine through ENT and Audilolgy at my local nhs hospital so didn’t have to pay for them.
I also have tinnitus, in my left ear, for some time, and I find it being very practical (lol) - I can hear my heart beating and can roughly judge what the BPM is.
Since it can be a nuisance sometimes, I experimented if there is the way to eliminate it, at least for some time, to let my ears rest. My hypothesis was that it may be a false sound, generated because of pinched blood vessel or pinched nerve. Since the sound is changing in intensity with every heart beat, it is more likely to be the blood vessel, whereby the increase of blood flow-rate, when the heart is pumping the blood out, causes the change in sound intensity.
Well, after some experimenting, I found out that pressing my lower jaw towards back (towards the neck) can cause immediate stop in my tinnitus. As long as I press it towards back, the sound is absent - the blood vessel or the nerve gets relaxed and the symptom disappears.
It would be lovely if others, with tinnitus, would test my way of disrupting the tinnitus and report back, just to know if it is my "special" problem, or it is maybe a rule for all people with tinnitus...
Hi! Thanks so much for sharing your information. Of course I immediately had to try pressing my lower jaw back towards my neck as I am willing to try anything at this point. Unfortunately, it did not work for me. It actually seemed to make the tinnitus in my left ear a little louder. I have tinnitus in both ears but my left ear is worse. I’ve considered a hearing aid but I just don’t understand how that would work by putting more noise in my ear. I may consider a hearing aid though if the pulsating tinnitus continues to get worse. Thanks again for your advice! Greatly appreciated.
That's interesting SteelHeart, your lower jaw experiment certainly reduces the volume but then it returns. Do you think doing this exercise regularly might stop it permanently?
I've had both PAF and pulsatile tinnitus for over 20 years. I hear every beat as a hiss, like if you squeeze a hose pipe. When I go into AF the noise is almost a continuous SSSSSSSS. At first it was annoying but then I worked through it to see it as a positive, that is it lets me know when I'm in AF. One heart specialist described it as my personal ECG monitor.
Have had audio examinations but no treatment available. In fact I'm told 'they' don't even know what tinnitus is, but that's only gossip.
To go to sleep I use a 'walkman' style small radio (with auto-off and 'buds') as a distraction. Works fine.
Hi Izzy’s….I have to agree with you when you say the tinnitus works great as an ECG monitor as I hear every regular and irregular beat. I also feel every irregular beat in my chest so I get it from both sides. My Afib comes and goes. I may have it for several days in a row and then it will go away for a month or so. I try not to think about the tinnitus so much and that seems to make me forget about it……for a little while anyway.
Yes, I'm somewhat similar in that I get PAF every week or two and it lasts up to another week. I tolerate the condition quite well, the worst part being the drop in BP, so it's good to know that you're in PAF and not doing things (bending over being the worst for me) where I might lose my balance , fall over and sustain an injury.
I have appointment at audiology on Wednesday to try and get new aids for this very problem. I also have a CT scan planned at some stage ordered by ENT consultant to make sure nothing else is causing the pulsatile problems
Hi! Please let me know how the hearing aids work for you. I had the CT scan and it didn’t show up anything. My EMT said there is nothing you can do for tinnitus. He said all those gimmicks they have out there don’t work and to save your money. Sometimes he seems to be so unsympathetic. Unless you have this condition, you have no idea what it’s like and the stress it can cause in your daily life.
Have you been to an ear, nose and throat specialist? Just an idea. They can do wonders with ear problems. Do you know what is causing it? Is it the medicine you are taking? That would drive me nuts! So sorry you are suffering with it.
Yes, I have been to an ENT and he said there is nothing you can do for tinnitus. When I mentioned the pulsating tinnitus he didn’t seem to know what that was. No one seems to know what it it is so I thought I would try posting it on here to see if anybody else was bothered with it and maybe had some ideas on how they deal with it. I wish I knew what was causing it. I’ve had regular tinnitus for over 20 years and the pulsating tinnitus just started about five years ago. As long as I don’t think about it or concentrate on it it’s not too bad. Seems at times it’s louder than at other times though. Thanks for your concern and advice. It’s nice to know I’m not alone in this.
Some years ago I went to my doctors re a stomach problem. Had to see a locum and whilst there I happened to mention my tinnitus seemed to be getting worse. He then asked why was I on Flecainide. For my Afib says I. Well you know that causes tinnitus don’t you he says! Me, with look of disbelief on my face and speechless for a few seconds replied, Well that’s news to me. He then said I would need to make another appointment to discuss that etc. I have been on Flecainide nigh on 16 years. My tinnitus is a constant hissing sound but only in quiet times can it really bother me. Watching tv or other outside noise disguise it quite well. I’m hoping to stop Flecainide around July this year and will be interested to see if tinnitus clears up or whether damage is done and now with me for good. x
Hi Frances, can I ask what is the plan (cold turkey or very gradual) for July when you stop Flecainide and what prompted the decision? I have been on 200mgs Flec for 8 years and would dearly like to do the same.
Of course you can. I had RF ablation October 2020 and at 9 month check up July 21 I had had 2 bouts of af just before. Decision was to stay on same regime and next appointment July 22. So far apart from some ectopics no Afib. I’m assuming/hoping Flecainide will be stopped then. I believe it is done gradually but don’t know for sure and will obviously ask.
Thanks, I guess the ablation will make it easier to come off the Flec successfully. Best wishes.
As there is no rush and as my heart took a couple of years to get used to it I intend to take a similar period to slowly wean off it. Someone here mentioned going down from 200mgs to 100mgs should be done slower than 100mgs to 0.
Hi there, I've had paroxysmal SVT for two years. Flecainide definitely made my faint tinnitus worse. Just had my second ablation with PVI and now off Flecainide for 3 weeks. On average tinnitus is reducing, thank the Lord. 👍
Fingers crossed it continues to do so. 🤞🏻
Hi Frances. Mine started many years before I had AF and I was not on any medication at all. The Sotalol I take nowadays hasn't made it any worse and neither did the flecanide I tooke before that. Hope that's helpful.
Thank you.
Hi Frances! Thank you for sharing your information about flecainide. I am not on flecainide but my cardiologist has talked about putting me on it because of my PVCs, PACs and SVEs. If he does I will definitely see if it makes my tinnitus worse and let the doctor know so we can discontinue it. Thanks for that bit of advice though. I appreciate it.
Hi Francis! Thank you for sharing the information on flecainide making the tinnitus worse. My cardiologist has been wanting me to go on flecainide because of my PVCs, PACs, and SVEs. If I do decide to go on the flecainide and my tinnitus gets worse I will definitely talk to the doctor about discontinuing it.
P.s Didn’t have tinnitus prior to Flecainide.
Bad luck. I doubt that your doctors would be unconcerned in the sense of dismissing it, only quietly frustrated that they can do nothing to help you. Research on the causes of this condition, which I know drives some to distraction and worse, seems to be singularly unproductive. I've had ringing tinnitus for years now, but not the kind that varies with my heartbeat (I can hear that easily enough, though, at night). My father had similar, I recall, but he described his as a train rushing through a tunnel. I feel lucky that mine isn't as bad as that. His mother had the same sort as I do.
Steve
Hi Ppiman! I’ve done all kinds of research on tinnitus only to be more confused. It seems the problem is not in your ears but it’s in your brain and no one knows how to fix it. I can’t believe with all the medical technology we have today they haven’t come up with something to help this problem. Approximately 30 years ago I first noticed a sort of roaring in my ears like the sound your father was describing. I didn’t realize it was tinnitus until I did some research. Now I’ve developed the Pulsating Tinnitus which is terribly distracting because I don’t always like to hear my heartbeat as I believe that makes me worry more especially when I’m having irregular heartbeats. I know there is no easy fix but I’m hearing that some people have tried hearing aids and it has helped so this may be the way I will go. At least try it. Can’t hurt
I met a young chap on holiday once who, I found out later was a brilliant physicist. He had bad tinnitus and it clearly very seriously upset him. I felt so sorry to hear his story. I gather, like you, that there are devices that produce white noise and the like that it seems some find helpful. I cope with mine for now thankfully. It does vary in intensity quite a bit or seems to. I remember reading that the brain shuts off all kinds of internal noises and pains even, but things can go wrong and it allows some through. I have sinus troubles, too, and often think there's a connection.
I saw this on Amazon: amazon.co.uk/Good-Ideas-Nat...
Steve
Interesting that you mentioned you have sinus trouble. I actually have one sinus that is totally blocked and the other side is totally clear. They want to go in to do surgery but I’m terrified to have it done. I’m thinking this may help with the tinnitus but I don’t know.
My dad had the same and had an op for his sinuses to no effect on the tinnitus though. I remember he didn’t like the op which was done back in the day without anaesthetic!
Steve
Oh my! You’re poor dad. 🙁 I would be under anesthesia and the ENT said it would only take him about 15 minutes….. but still I’m hesitant to have it done. It’s been like this for about 20 years or more and I don’t have any sinus issues, headaches or anything like that so I think I should leave well enough alone. Especially since you said it didn’t help your dad‘s Tinnitus.
I replied to you above about my AFib, valve repair, tinnitus, and hearing aids but have just seen your post about sinuses. My left nostril often feels blocked, it runs in winter, and I get sinus pain in my left cheekbone and ear, but I hear the pulsating tinnitus in my right ear! I do think there is a link between sinuses and tinnitus, and also a link with dairy foods and maybe other foods. I remember the first time the whining tinnitus started, 25 years or so ago. I hadn’t had any dairy foods at all for about 6 years, (I had practically got rid of my irritable bowel by dropping wheat, dairy, sugar, fruit) but was getting very fed up with a restricted diet, and one day indulged in a scone with butter. It sounds unbelievable, but almost immediately the whining started in my ear. And I remembered that as a child, when I drank a lot of milk, had butter in sandwiches, I had strange squeaking sounds on and off in my ear. I was also very prone to colds as a child and adolescent and had some very painful sinus episodes in my twenties.
This time after the scone the whining came and went, but then settled permanently, made worse because I worked in a very noisy school, with big echoing classrooms and corridors, and that affected my hearing generally. I eventually the pulsating appeared. I have oat milk now in tea and on gluten free muesli, but the tinnitus is permanent and occasionally if I eat unwisely, I’ll wake up in the night with a loud drum beating a bit unevenly in my ear!
So I very much sympathise with you. I’ve tried massaging my jaw, doing neck exercises, and the pulsating and squeaking might change for few seconds, but returns. I took gingko biloba for quite a while as recommended somewhere, but it didn’t help.
I think that food intolerances can contribute to tinnitus, and that possibly my AFib is linked to digestive issues. I tentatively mentioned that to the cardiologist but got no response. So really it’s up to me, but I no longer have the will power to cut out things completely, and I don’t know exactly where the problem lies, so I try to limit certain foods.
I have noticed if I have a flare-up of irritable bowel, my arthritis, AFib, and tinnitus are all worse. So … inflammation must be at the root of it. Sigh!
Good luck with your efforts to get relief!
Hi! I’m sorry I must have missed your response earlier. Thank you sharing your story. I find it interesting that we both have arthritis, a fib, irritable bowel, and tinnitus. I wonder if there is some sort of connection between all these? I’ve been hearing my heartbeat in my ear for the past three years and when I looked it up on the Internet it’s called pulsatile tinnitus. It said it can be benign or it can be a sign of a serious health issue. I have decided to try to get to the bottom of it because now I’m worried.
I was told by a hearing doctor that a hearing aid would help. So he let me try one for a week before I paid for it to see if it would help the ringing. My tinnitus is more like white noise than ringing. Very annoying so I was willing to try the hearing aids to get relief but unfortunately they did nothing. 🙁
Since pulsatile tinnitus can be caused by problems with your veins or arteries I’m going to get that checked out. I guess there are several different tests they can do. Sad part is, they may not be able to find out what’s causing it and I will have to learn to live with it which I’m afraid is probably what is going to happen.
Thanks so much for taking the time to write. Sorry I was late getting back to you.
No problem. I decided I had to learn to live with it and not let it upset me, as I have regular ecocardiograms and other tests since my valve repair, and they test blood flow to the neck, BP etc, and I have no issues with those. I have had several migraine clusters since my op - at least the visual flashes - but they last only about 20 minutes, and I 've checked to see if my BP rises during them, but it doesn't. I think the migraines are to do with tension in my neck and shoulders - straining to look at a screen, or with blood sugar dips. I think both they and the tinnitus could be linked to arthritis in the neck Today I was sitting looking at my phone, with my neck bent and suddenly realised the rushing sound tinnitus was louder. It's easy to get tense without realising it on a computer/phone/laptop.
I also agree with secondtry below that sugar can make it worse, as it makes my arthritis worse. Again inflammation.
Maybe one day they'll discover a gene that causes all these things! Why do I have arthritis like my father, but my brother didn't, nor did my mother? My mother had digestive problems towards the end of her life, and sinus problems. I do too, my father didn't! But both I and my brother inherited my father's hearing problem, thickening of the bones in the ear, which causes increasing deafness, and maybe tinnitus.
Well, what a long thread on tinnitus. it does help knowing there are lots of others out there with the same issue, as well as the dratted Afib! I was hoping I would wake up after my op with no more pulsing in my ear, and no more Afib, but alas, it hasn't happened, so my way of dealing with it now is to ignore it. However the Afib is less noticeable and I'm hoping that as my heart learns to work without superfluous blood sloshing round in it (as the very nice cardio physiologist put it) one day the Afib might disappear completely.
Good luck!
Thank you! I really do appreciate you and everyone else that have taken the time to respond to my Tinnitus post. It’s just seemed that there would be someone out there that has tried something and it worked for them. I see in some cases it has, but most cases it has not.
I did want to mention to you about different ways that you said you move and it makes the tinnitus louder or sound different. I just noticed that if I bend over to pick up something off the floor, the tinnitus gets noticeably louder. If I put pressure on my neck, the tinnitus gets louder also. Hmmm . I believe this is something I am going to talk to my doctor about.
I hate when I go to the doctor though and they just brush it off as nothing. Sometimes I don’t think they’re really listening. When I go to my cardiologist I’m lucky if I’m in there for more than 10 minutes. One time I went to a cardiologist and I had five questions written down on a piece of paper to ask him. He acted so rushed and was so rude that I never got a chance to even ask one. I was so upset.
It’s been really nice chatting with you and meeting you.
I wish you all the best also. 😊
My tinitus is exactly the same . Several people have mentioned the Flecainide causation and I suppose that is most likely. I also recall others have mentioned minuscule blood clots in the ear due to AF and another theory was sensitivity and anxiety causes the brain to turn up the volume capability to max (i.e. straining to hear something when there is nothing to hear) rather like the hiss when you used to turn up the volume on cassette recorders pre Dolby.
The only practical tip that may help that I have found (I think) is try taking out the majority of sugar e.g. no jam etc from your diet for a day or two. For me this seems to turn the volume down.
Hi there, I've had paroxysmal SVT for two years. Flecainide definitely made my faint tinnitus worse. Just had my second ablation with PVI and now off Flecainide for 3 weeks. Don't know if you're on Flecainide, but may be worth trying a different anti-arrhythmic if you are. On average tinnitus is reducing, thank the Lord. 👍. All the best to you.
Hi and I emapathise. I had pulsatile tittinus most of my life so just thought it was normal. After ablation No1 I awoke in NSR but I couldn’t hear my heartbeat so I thought I was dead. A white vision was peering over me and it took me a while to recognise that it was the nurse telling me to lie still, not an angel!
Although I got other arrythmias and AF returned and I have ‘ordinary’ tittinus, pulsatile tittinus is now banished - no rhyme or reason but I quite like the peace because it did keep me awake when my heart used to race as it’s always worse lying down.
Like you nobody seems to know what to do about - they can explain why some people get it up but no solutions. I took to wearing ear buds at night and listening to an audiobook and that ‘white noise’ distracted me enough to be able to sleep. It got to be a habit so now I can’t sleep unless there is speaking voice very quietly in the background.
Hi CDreamer! Loved your story about seeing an angel. Brought a smile to my face. 
I wonder what happened to make your tinnitus go away. I would love to know and be able to do the same. The sound I hear with my tinnitus is like constant white noise or maybe like one of those nights in the spring when you hear all those crickets making that noise they do. Whatever it is, it can be miserable and especially now that I can hear every single heartbeat when I listen for it makes it worse.
Hi Debjimmay, if you are based in the UK, then get an appointment with your hospital audiology department rather than a private person. The NHS provides hearing aids for free and suits them to your needs. Our ENT has a specialist who works with those suffering from Tinnitus. Mine is a continuous hissing with a sporadic pulse as well. The trick is to not pay any attention to it, hard I know, but when we hear and register it, we are telling the brain it is important and that then heightens our awareness of it. Your specialist can give you exercises to give some relief and as said before settings on the hearing aids too. There is a very good app, if you have a smart phone called RELIEF you can make up or use their sounds to help mask the tinnitus, and actually that is all we can do is ask it if needed and otherwise try to forget it is there.
Hi Treschere. Unfortunately, I am not in the UK. I am in the US but I’m going to contact my Hospital to see if they have any information on this for me. I do notice that if I do not pay attention to the tinnitus it does goes away. Some days it seems to be worse than others and bothers me more. I even asked my ENT if he could take my hearing away would that stop the ringing. He said no because it’s in your brain. I wish I could find a compassionate doctor that understands what this is like. I guess they pretty much brush it off because there’s nothing they can do.
Pulsatile tinnitus - I know I have it in one ear - makes me so claustrophobic. Guidelines are to go to NHS ENT just to check the ear, (and if aids likely to help, they have v good ones free plus batteries for life, adjustable by your smart phone) and MRI to check if there is a growth or distortion affecting the blood vessel (those could be dangerous), but most often no cause can be found. Mine was sudden onset. It varies, and if I sleep on that ear it lessens. I also wear a headband with “pink noise” headphone in it if I can’t manage otherwise and that distracts me. Nighttime is the worst. And I don’t take flecainide, or artificial sweeteners or processed food. The sudden onset was soon after a very traumatic operation that left me kn pain and pretty disabled for a while, my hypothesis is the shock and distress caused it. Good luck!
Hi FaberM, can you please tell me the name of this headband? And what is "pink noise"? Thank you.😊
There are lots online - soft fleece headband with headphones in and you can sleep on the flat headphone. Some are Bluetooth which does away with awkward wires. When you buy the music to put on phone for the headphones, there are different ambient noises and “pink” is softer than “white noise”. There’s also “brown noise”! Good luck
Hi FaberM. Thank you so much for your response and good advice. I am open and willing to try anything. I’m gearing more towards the hearing aids and I like the sounds of the pink headband you were describing. I’m so glad I came here for help. This is the first time I’ve posted anything and everyone has been so helpful and nice.
I've had it too for many years. Sometimes louder than others. I mainly ignore it. Saves having to monitor with devices! 🙄☺️
Sympathize as I have that awful noise, which I can forget when busy but sitting or in bed it’s loud,.....I do hear my pulse in my head if I’m in bed as well as the tinnitus....Nit always though....I seem to be gathering all these wonderful things as I age....🥴
I have the pulsating noise in my left ear only and it is intermittent and varies in loudness. My medics also unconcerned. I am pacemaker dependant after sinus node ablation but otherwise my heart is behaving very well. I think I have just to live with it.
I’ve had tinnitus for about 10 years so when I started experiencing, what I thought was, pulsatile tinnitus I just accepted it for almost a year. Then I went to my GP and asked him to check out my heart and they discovered a heart murmur. Following a diagnosis of aortic stenosis I had a valve replacement a couple of years ago. I can still hear my heartbeat but it’s no longer irregular. You seem to have had all the relevant checks so there is unlikely to be anything lurking for you. As to dealing with it, it’s a real challenge because with Afib (which I’ve also had) it does seem to resonate right through your body. I just tried to keep myself busy, listened to a lot of music and spent a lot of time outside with nature’s natural noises. It’s tough and I have every sympathy with you. I wish you luck and calm in dealing with it.
When I was really stressed dealing with it my doctor said to me - well you could have worse things. It took a while but I did eventually understand what he was trying to say, although at the time it didn’t!!! Sue X 🙏
Hi TMeditation. Thank you so much for sharing. I also have a heart murmur and have aortic valve sclerosis. That’s interesting as I’m wondering now if this may have something to do with the pulsatile tinnitus? But yes, I have thought many times that it could always be worse. I should be thankful that it’s only ringing in my ears.
Nice to hear from you. When I went to my GP he listened to my heart and took my BP and said nothing to worry about. However I had a write up with me I’d seen on a tinnitus website that said ask them to check your heart by listening at the left side of your neck. When he did that he picked up the problem. Very glad I asked him to do that now! Your having a heart murmur might be significant with your diagnosis. Perhaps they could have another look at your aortic stenosis. Wouldn’t hurt maybe? Although I also had some slight other symptoms (I’m the same age as you by the way) a little breathless in walking uphill and a slight ache in my left shoulder at the same time. However these only happened a couple of times and I was prepared to ignore them feeling otherwise well. I really wish you all the best. Sue X 🙏
Hi. I have persistent AF and at times I hear every single heartbeat including all the irregular ones. It's just like a clock ticking in my ear and being in persistent AF I can sometimes hear it for hours. I mentioned it once in the comments section when I wore a monitor but it was never mentioned. I don't suppose it is anything to worry about just a nuisance.
Hi cicek. I can sympathize with you totally as it sounds like we both have the same exact thing. Whenever I feel a flutter in my heart I can hear the extra beat or whatever is going on in my ear. Sometimes I will have an early beat every other beat, or every third beat, or every seventh beat but I’ve gotten so now I count how how far I go between regular beats. And then it’s always a relief when it beats back to normal. Like someone said, it’s like having a EKG in your ear which is true. Not something I really like but like you said I guess we just have to deal with it. Things could always be worse. Thank you for responding and the best of luck to you.
Are your eustachian tubes blocked? do u suffer with Sinus problems?
Eustachian tubes blocked
Hi PICCASO. Yes, I do have sinus issues. My left sinus is totally blocked and the right sinus is clear. They want to go in to do surgery but I’m terrified to have it done. I wonder if it’s possible to just clear out the Eustachian tube? I will do you some research on this. Thank you so much
As my persistent AFIB got worst my tinnus also got worst. It went from a gentle swoosh in the rt ear to all manner of loud squeaks and roars in both ears. After numerous CT scans to rule out aneurysms and blockages in my neck I was sent to a ENT where I got my hearing checked. After making the rounds at Harvard Med in Boston I was told I was fine and to go home and get use to it.
It did get me headed down the ablation path. After a cardioversion, ablation, cardioversion my AFIB stopped, BP and HR dropped a lot, and the pulsing tinnus stopped completely.
I have to say that at times I HATE the pulsatile tinnitus. Do claustrophobic!
I have had pulsitile tinnitus off and on for years and it always gets worse when I am ill. I also have a continuous hissing in my ears which I don't really notice until unexpectedly sometimes it stops and I think maybe this is the end but thankfully up until now it has always restarted 😉
I do probably for 12 plus years originally my Cardiologist said it was caused by the Flecainide but after an ablation I am off Flecainide and the sounds are no different, I pick up ever heartbeat and any different beat. What confuses me is how sometimes the sound of the heart beat is much louder even if the heart rate is only a little louder.The replies to your question on hear are really helpful so pleased you asked this question
Along with tinnitus do you — or anyone reading this reply —experience noise sensitivity (Hyperacusis)? Prior to my first “known” aFIB episode, I suddenly suffered intermittent noise intolerance. It was acute for a while but comes and goes now. I wonder whether the tinnitus and hyperacusis is a pre- or post- warning?
Never had any trouble with my ears, no ear ache, infections, nothing till I was diagnosed with glaucoma and started using eye drop to lower my eye pressure. Approximately 4-6 months after using them I woke up in the middle of the night with a bunch of crickets chirping in my ears along with other night sounds and has never gone away. When the weather is changing the sounds get much louder too, crazy, huh. ENT , a couple I went to, said nothing you can do, both said they had it. It’s enough to drive you crazy but after 10 years now, I have gotten use to it, a little. Wish they would find something to stop it but guess it’s not important enough!!!!
Hi Red! My optician just diagnosed me as a glaucoma suspect so I’m hoping if I need drops I don’t have more problems with my tinnitus. 😳 Thank you for sharing that though. I will be keeping an “ear” out if I need the drops. I guess the other alternative is having shots in your eyes so it doesn’t seem like a good situation either way.
HI there, also a sufferer of tinnitus, always left ear but right ear seems to be starting too. Been bad for about 18 months now. I had an ablation on 25 Nov and it has been worse since then. Louder and more intrusive. I can her my heartbeat only when I'm laying down and leaning my head to the left.I am convinced it is something to do with my neck/jaw. I get headaches and nausea with it too, but have found a way to alleviate that symptom by pressing and massaging the trigger points on my jaw/tempromandibular joint and side of neck. The headache goes away within minutes which is great.
My tinnitus gets worse at night and wakes me up after around 2 hours of sleep when it is a crescendo. I sit on the edge of the bed and gently stretch my neck. Then I imagine a string pulling my head straight up (stretching my neck) and lean my head back as far as it will compfortably go, and then tilt my head to the side, again as far as it will comfortably go. I get weird sensations in my head, sometimes popping lights, or nausea, but after 30-60 seconds the tinnitus noise goes down. It is like someone is turning the volume knob from 7 down to 5 or so. It is not a lot but enough to calm the panic and allow me to get back to sleep.
Which brings me to the next subject. I have found that for my sanity and mental health I have to stop fighting it or trying to find causes and 'wins'. It leaves me open to such crushing disappointment that it can cause me to be on the verge of breakdown.
The best few weeks I had was a period where I worked hard on relaxation and not fixating on the sound. I took an "I don't care, do what you want (the tinnitus), I have far too many good things in my life to let you ruin it for me"... and whenever I felt the stress/panic response rising I would repeat this "go for it.. I couldn't care less".. type of matra and focus on something else... this took preparation of course.. and work.. but it helped immensely.
Of course tinnitus is unrelenting and is there when your defenses are low... but I haven't had to take a Zopiclone for months now and am getting good sleep. It was important to me to have some control... and giving it over to some hope, or some new technique was a recipe for disappointment.
of course I haven't given up on trying to find a cure, or improvement (I have had Physio, chiro, acupuncture, aromatherapy - this is the only one I have continued, the relaxation and positivity I get, plus the relaxation of tight shoulder and neck muscles is a help) but I just don't get emotionally invested in the attempt. I take the view that an improvement would be great, but I am fine if it doesn't help because I am managing.
Sorry for the epic response, but I hope there is at least something here that will help.
Hang in there.
Sean
Hi Sean! Thank you so much for sharing your story and for all the information on how you are coping with your tinnitus. It sounds like you have the right attitude and are taking all steps necessary to help alleviate it.
I have days where I feel the tinnitus is driving me insane and then other days where I barely notice it unless I think about it. The worst part of my tinnitus is the constant pulsating I hear. I hear every single normal beat and every single irregular beat. The sound is not like a thump thump but more like white noise that goes off and on with every beat. Does that make sense? In a way it’s like a constant EKG going on in my head. One time I thought it sounded like A-fib and when I checked with my Apple Watch it was!
So I guess there is good and bad to this condition and looking for a cure when there most likely isn’t one can be very stressful and frustrating. I am learning to live with it and thinking about trying a hearing aid as a last resort. The problem is they are not free here and the cost would be around $4,000.
Thanks for writing and the best of luck to you.
Deb
I know exactly what you mean... sssSSSsssSSSsssSSS . and given that we AFibbers are already pretty much fixated on our heartbeats it just makes it so much worse, Which spikes up our anxiety, which makes an AF event more likely.Please don't take this as me advising you not to stump up for a hearing aid, I am not, and as we often say on this forum, we are all different and have different reasons why we experience these conditions. But... I went to an audiologist, then an ENT and then to the NHS hearing people who gave me a hearing aid. The reasoning was that I had some hearing loss in the higher frequencies and as the brain often tries to supplement this lost hearing with it's own version, this could have been the cause of the tinnitus. So I wore the hearing aids for 7 solid months every day, exactly as prescribed, and it made zero difference. In disgust/depression I stopped using them. Again no difference (to the tinnitus).. I am now wearing them again - for other reasons.
Maybe your cause is different to mine and they work a treat for you. The other thing that high quality hearing aids can do is they can generate the different kinds of sounds to override the tinnitus noise. Mine are only mid-range so do not have that feature. For that I use the Widex ZEN tinnitus app on my iPhone. The free version.
Best of luck to you.
Thanks again for sharing! When I went the Hearing Center where my audiologist is and they recommend trying the hearing aid and if it does not help I have 30 days to return it with no charge. Being that most of us with tinnitus are desperately looking for something to help, even if it’s a little, I thought I would give the hearing aids a try.
Go for it! And the best of luck to you, I hope it helps. I'd be interested to hear from you once you've tested them.
I just now made an appointment for the end of the month so I will let you know the hearing aids work. Wow! I just downloaded the Widex Zen app that you recommended and it’s amazing. I have found several of the sounds diffuse my tinnitus very well. Thank you for recommending this app. I’ve tried several other apps for tinnitus but this one works the best!
Well, I tried the hearing aid and unfortunately it did nothing. I was so hopeful I would at least find some relief but it didn’t happen. I kind of thought something that easy wouldn’t work but at least now I know that I tried it and I will move on to try and figure out other possible causes.
I have PVCs and I used to have tinnitus until I started taking Taurine and magnesium glycinate… taking these supplements has reduced my PVCS by 90% and I no longer have tinnitus anymore… I take 1000 mg 3 times a day if Taurine and 600-800 mg if the magnesium
I have the same problem, occasionally it seems to go away for a few weeks then comes back, . The brain is wonderful, in that you can learn to switch off from it , by not focusing on it . The worse place to have it is in the quite after going to bed, have found the swishing sounds tend to ge very soft then, and the tinnitus I tune off from it. When talking about it , or seeing adds to supposedly cure it I begin to hear it more.
I too have pulsating tinnitus. And have learnt to live with it., but at times it’s not easy. I have had the usual tinnitus for 25 years and the pulsating version for 15 or so years. Actually in one way I’m quite grateful, because it was because of it that I realised my heart was beating so irregularly. I had two or three episodes of AFib - ie could hear my pulse leaping and stopping then racing, - over a year. That lasted two or three days, and I also used to often get very short episodes, lasting 30 seconds perhaps, when I lay down after going to the loo in the night! I unwisely ignored it, but I didn’t feel anything in my chest. No other symptoms. Then one day I woke up, could hear my pulse beating irregularly in my ear, and it didn’t stop. So I did go to the doctor, was diagnosed with AFib, and eventually with a badly leaking valve, so was put on Apixaban and Bisoprolol. A year later (Covid intervened) I had 2 valve repairs. 10 months on, I can’t say I feel wonderful. And I still have the AFib and the pulsating tinnitus. Like you, the doctors have never commented on it.
The tinnitus is worse at night, because it’s quiet. During the day I manage by ignoring it. I have considerable hearing loss in my right ear, some loss in my left, so I have been wearing hearing aids for 15 years or so, which make a difference because other sounds are clearer and so mask the whooshings. They are normal NHS hearing aids, and the audiologist told me nothing could be done about tinnitus, but that the hearing aids would help.
I was able to try the hearing aids last week. I was so excited and hopeful that they would help. Unfortunately they did nothing. Thanks for sharing all the info though.
Sorry to hear about your tinnitus. I too had developed tinnitus, in my right ear. At a recent consultation my EP, for other reasons, changed my blocker from Bisoprolol to Diltiazem. After 48 hours of coming off Bisoprolol the tinnitus disappeared. I am hoping this continues.Just sharing my experience in case it helps.
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