Utterly terrified of palpitations - I’m a mess

[CuppaTeaAndAJammieDodger]

Sorry - this is going to be long.

Firstly I should say that I’ve suffered from heart palpitations to some extent for years - a combination of big thuds, small thuds, very brief flutters and on a couple of occasions slightly longer runs. They always seemed to appear for a few weeks and then I’d have a few weeks respite. Had a 24 hr monitor which didn’t show much other than a few ectopic beats, but sods law, I didn’t actually feel any palpitations when I had it on. I’ve been on beta blockers for migraines and anxiety for 9 years - not that they’ve really made much difference to the palpitations.

Anyway, at the beginning of March I suffered a big Pulmonary Embolism as a result of knee surgery and was rushed into resus and diagnosed (had a CT scan) after a couple of days of some breathlessness and then waking up and suffering from heart palpitations that didn’t stop for about 15-20 minutes. I was told that my heart was put under strain and admitted to the CCU (coronary care unit). I was in hospital for 10 days and discharged on blood thinners (will be in them for 6 months). I’ve been back to A&E a few times since discharge with varying symptoms and had ECGs, X-rays and blood tests but they’ve told me I’m OK and sent me home. I’ve also had an Echo done and it was normal and the respiratory team have signed me off saying my heart is fine and that I can put any ideas of long term problems as a result of my embolism out of my mind.

Funnily enough I didn’t really have any palpitations in hospital or at home until about 2 weeks ago when I started having some - runs of really being aware of my heartbeat, single thuds or a tiny (1 second) flutter and some things that I THINK are palpitations when my throat tightens momentarily and I have a rush of adrenaline, a bit like when you miss a step. I’ve been told by the GP that I have post traumatic stress and generalised anxiety disorder and that the palpitations are as a result of that. I’ve had plenty of other symptoms such as insomnia, chest pains (fortunately they soon to have gone - touch wood), feeling and being sick, obsessively focusing on my breathing, depression etc. I have just started seeing a psychotherapist but we’re still in the fact finding stage and haven’t actually started the therapy itself yet.

But I am in a mess - all I can think about is that there’s something wrong with my heart still and that I’m going to keel over and die at any second.

I was lying down earlier (they mainly happen when I’m lying down) watching the royal wedding - relatively calm and relaxed - when out of nowhere my heart started fluttering and wouldn’t stop. It carried on for about 15 seconds and I screamed for my husband. It stopped temporarily and started again for about another 10 seconds and then stopped and returned to normal.

I was absolutely terrified, completely convinced that something terrible was happening to me. Shaking, hot, just beside myself with fear. All I can now think about is when is it going to happen again, what does it mean, do I have a heart condition/damage they’ve missed?

I seem to be spiralling downwards and I don’t know how to stop it.

Does/has anyone else have/had flutters or palpitations like this?

Just another question about atrial fibrillation to those of you with experience of it - does it come with other symptoms at the same time? So of the 3 or 4 times over the years (including the be the other day) I've had the flutter that's lasted anything up to to about 20 seconds I haven't felt faint, chest pain etc. just the heart thing (and subsequent panic).

Don't know about AF - but I had a heart attack recently and I have never suffered flutters, strong beats, palpitations, whatever - before or since. Heart beat steady as a rock - until it wasn't. So do not automatically assume that they are indicators of that sort of thing.

Really sorry to hear that BeyondThePage - what a scary experience that must have been for you.

I'm going to see my GP tomorrow, see what they have to say. I haven't had any more of the longer flutterings (touch wood) but have had some of the single ones. I am really hoping it's not Afib.

It was scary. I hope you do get some answers, it may well just be the anxiety causing these things, even if AF once you get treatment it can be fine.

When I was in hospital in the cardiac unit, all the really old folks with all sorts of conditions were telling me about their first heart trouble 20 years ago etc... surprised me how people were still around sometimes - especially one old guy (mixed ward) - late 80s - who was on his 4th pacemaker and had had a quadruple bypass 12 years ago - he was in to have his pacing wire replaced since it was getting a bit old... reassured me quite a bit.

Yes, when I was in CCU it was all old men having their pacemakers sorted.

I'm off on holiday on Friday (was booked before I got I'll) and bricking it to be honest.

I know this sounds dismissive but I would be reassured by the anxiety diagnosis - I’ve struggled with them for years and always wondered if it was something deeper. It really isn’t. My awareness and thinking about them, being anxious of them etc., literally brings them on and worsens them. I’ve also had clear ECGs on a number of occasions.

You have to lose the fear of them. Once you do, they’ll honestly reduce, I promise. Palpitations are relatively normal and common, but so easily exacerbated by anxiety and acute awareness of them. Now I’m not remotely worried about them, and they honestly rarely happen.

As long as you’ve had in-depth tests, which it sounds like you have, try and trust your doctor’s assessment and feel reassured. When you feel them, think, ‘Oh, whatever. There’s nothing wrong with me. I can have loads of these and nothing bad will happen because I’m healthy.’ Don’t go, ‘Oh my god! What is happening? Something is seriously wrong with me!’ because that will truly send you into a spiral and make them so much worse.

Let me come at this from a different perspective.

I have a serious heart condition, a leaking mitral valve plus hypertrophic cardiomyopathy plus atrial fibrillation. I am on a cocktail of varying drugs as a result, spent three days on life support and such as part of the condition was caused by endocarditis but the HCM was always there we just did’t know it.

On occasions I have multiple palpitations as well as irregular heartbeats, severe breathlessness and there have been periods where I haven’t made it out of bed as a result. And if there’s one thing I’ve learned it’s that any kind of stress, any kind of anxiety can make my symptoms worse. And the reason for that is because stress/anxiety causes the body to produce adrenaline. Which in turn causes the heart to beat faster which in turn causes more stress and so the cycle continues.

If I am stressed at any point I end up feeling severely breathless and sometimes have even been known to throw up and the only thing that sorts it is if I relax, have a very slow drink of water, sometimes a nap depending on the height of the stress in order to move forward iyswim.

In my case the palpitations are also part of an actual heart condition and so I have to be careful about not becoming stressed or anxious, but if you don’t have an actual heart condition then the anxiety is going to feed the palpitations which in turn are going to feed your anxiety and so on.

I am much, much better at dealing with stressful situations now. Things that used to annoy/stress the hell out of me now I walk away from because my health isn’t wort worth it.

As you’re on blood thinnners you’re not at risk of a clot assuming your INR stays stable. Are you on warferin with regular checks? If so they will pick that up quite quickly, although a word to the wise, warferin takes a while to stabilise and some of the side effects if INR is high can be nausia etc so try not to over-think. But the thing with being on blood thinnners is that they prevent the clots from breaking up while they break down, so that’s not a risk factor for you.

If you’ve been in the hospital for ten days with no result then chances are there isn’t an issue, so the anxiety is the thing you need to focus on rather than the palpitations. They can be scary, believe me they can. But if instead of focussing on not wanting to die and thus increasing your anxiety levels you focus on not being anxious instead then you should be able to reduce the anxiety and thus the presence of the palpitations.

Do go and see your GP though, and where possible cut out any coffee, alcohol, refined sugar etc.

Diamonds - Thankyou so much for your post. It must be really frustrating to see someone who has had a clear Echo and OK ECGs (although my t-waves were still dodgy on the last one a couple of weeks ago, although they weren't worried) coming on here and essentially freaking out.

I'm desperately trying to change my mindset when I have one from abject terror (counterproductive) to trying to ignore them. But it's tough - especially now I've convinced myself I have Afib.

I hate the person I've become since getting sick, absolutely hate it.

And sorry, to answer your question - yes I'm on thinners, Rivaroxaban (so don't have to keep checking my INR).

Haven't drink coffee or any caffeine in years, alcohol's off the menu at the moment too as it isn't advised on thinners, not really having many refined sugars either - appetite's taken a nosedive in recent months.

So I went to the GP, never seen this one before - bedside manner left a little to be desired but anyway.

He thinks it's SVT, so the heart rate temporarily going fast due to anxiety rather than irregular causing the flutter. He also said that it may have felt forever but the duration (about 30 seconds in total) was very brief from a medical perspective.

He is referring me to a cardiologist for a 24hr monitor (although pretty convinced that won't be long enough) but did say he was doing that for my reassurance rather than him being worried about it.

I still feel super shit about it though. I keep telling myself that I had a 2 or 3 episodes the same before the PE (had anxiety for years) but my stupid brain won't let me calm down.

My FiL had long runs of heart palpitations. I don't know all of the information about it, but he thought it was anxiety attacks at first. After monitoring for long periods of time it was a heart problem and he had some sort of surgery to fix it. I don't think it was a pacemaker, but something else.

GP could be your best bet, and eventually referral to the cardiac team?

Hope you feel better soon.

I've just read the rest of the thread, sorry i'm on my phone and it didn't show properly. I hope what i've posted doesn't add to your anxiety. My FiL is fine now.

Sounds a bit like Atrial fibrillation? My mother used to have this but it has settled a bit in recent years. See your GP for a cardiologist referral.

It sounds nothing like AF and it would show on both ECG and echo.

OP

Sorry I'm a bit late to this.

Not sure what you know about your heart and circulation so I'm going to start with a really basic concept.

Your circulation system is like your central heating system, the pump (boiler or heart) sends fluid round the system.

It has both mechanical and physical parts.

The ECG shows the electrical system, the echo the mechanical function.

You have had a normal echo so the structures are all normal.

Palpitations are just heart beats that you can feel, some people feel them a lot and some people don't. It's a bit like looking at your inner arms, on some people you can see veins, on others you can't but they are still there.

As you mostly get them lying down there is a fair chance that you just feel them because of the position you are in.

Does your heart rate increase when you have these palpitations? If it does then it could, and I repeat could, not diagnosing you here be an SVT. If it is then there are a couple of ways to get rid of it. Some need a medical professional and for yuo to be in hospital.

One that doesn't and won't cause a problem if it isn't is ice cream.

As big a chunk of ice cream as you can manage to swallow in one.

Another that works in children is to rub an ice cube on your nose - I know it sounds like I am having a joke, I'm not.

If your heart rate slows down when you get your palpitations then it is possible that what you are feeling is the effect of the beta blockers.

Beta blockers don't just slow your heart rate, they increase the 'squeeze' of the heart, so the pump is sending out more liquid with each squeeze.

Keep a journal of when they occur to see if there are any patterns. Learn to take your pulse and do that when you have any palpitations, keep a record of it, but also of your normal pulse.

Monitor if you have eaten, or had caffeine.

At least then you can go to your GP with a record of what has been happening.

When you see the cardiologist ask about a 'cardio memo', there are various other names for them but it is similar to a 24 hour ECG but instead of being wired up all the time you put the monitor to your chest and record when you have symptoms, you normally have one for about 2-4 weeks at a time.

susurration

Thant sounds like an ablation.

OP if it is SVT and you are symptomatic the cardiologist may suggest this procedure. You basically go in to hospital, the cardiologist puts wires in your groin up to your heart (you will have anesthetic) and freezes or burns a tiny bit of the electrical system away.

good luck

You can buy a little device that you attach to your phone and then you can give yourself a basic ECG whereever you are. I have one and it meant I could get a recording of my SVT to show the cardiologist as they never bloody well happen when you need them to. It is 100 pounds on Amazon, its called Kardia and it is very well respected by cardiologists. When you make a recording you can chose to save it, email it to your doctor or email it to the Kadia cardilogy team and they will read it for you (this option comes with a small charge)

It sounds like you might have a combination of SVT with some PVCs. Both are benign in small doses but very annoying. Both definitely increase with stress and the SVT can be managed with beta blockers and/or vasovagal manovers (google them). BUT beta blockers are very person specific, some work well for some people and some make things worse for some people. You should consider changing/stopping your beta blocker and see if that is helpful. The holter is a good idea, but if you are anything like me, as soon as it is put on, your heart will behave like an angel. It is very frustrating but keep plugging away at it and you will get it figured out

I have SVT, or to be exact, paroxysmal supraventricular tachycardia, I was born with it. There is a web of nerves within the node that controls my heart rate which sometimes shorts out, when I was younger it used to cause me more issues as the episodes were more frequent and prolonged, the worst lasted for 5 hours and in the end I had a trip to hospital to get it stopped and back to a normal rhythm medically.

Have so far, not had an ablation as I'm 47 now, and since my 20's, other than the odd flutter it hasn't really caused enough of an issue to warrant the surgery. I took beta blockers in the past to help control it, and was also given verapamil to take when it happened but I don't like the way it slows the heart rate down slowly, my svt has always started and stopped abruptly. It also can happen during rest, it's never tended to be linked with exercise or exertion. SVT is annoying and a little worrying, but on it's own, is not life threatening, I've recently had other more serious heart issues (not linked to SVT), and have been reassured by my new cardiologist that the 2 issues won't cause problems with each other, SVT is electrical and my other issue is artery based, ie plumbing!

@sashh you seem to know a lot about hearts, ever come across spontaneous coronary artery dissection?

sash you are a veritable mine of information - thankyou! The one offs (so a single bump or flutter that doesn’t even last a second) don’t seem to affect the rate at all, but the longer flutter that I had on Saturday (15 secs then 10 secs give or take) - well - I don’t know as I was so busy panicking that by the time I got my phone’s heart rate monitor sorted (I’ve got an app called Preventicus on my phone that reads your rate) it was reading as about 65 and normal rhythm, so I can’t say to be sure. It was just fluttering - the GP said that could meant it was going fast. So you think even paroxysmal AF would be indicated on an echo or ECG?

SeatoSki it’s funny you should mention about the beta blockers, when I was in hospital they took me off them for a few days (so they could accurately monitor my BP) and, although I had had some right ventricular strain (due to the backup of blood from the big clot), I didn’t really have any palpitations until about day 4 when I got withdrawals symptoms from not taking them and had a few episodes of rapid heart rate until they put me on a 1/2 dose - which sorted out the withdrawals and I continued not to have any palps. It was only about 6 weeks ago when I started to get them - which I guess kinda coincides with my anxiety bedding in.

nipper

I have come across a lot of things, including that. By the way is it just pSVC or do you have Wolfe-parkinson-white? Or another named syndrome? The extra 'bundle of nerves' could be a 'bundle of Kent'.

Before ablation was used only those with severe symptoms were treated as it could only be treated by open heart surgery and literally removing the bundle of Kent, which also often involved destroying the AV node, so you had to have a pacemaker as well.

Now they can be much more selective about where they ablate and 'ablate and pace' is a planned procedure.

OP

pAF would only show on the ECG if you were in AF at the time, the cause of the AF however may show up on an echo as it is accociated with the size/shape of the atria

From what you have said about the stay in CCU and the drugs I'm even more convinced you are one of the unfortunate people who is aware of their heartbeat more than others. It is annoying and it can be worrying but is just one of those things.

It's 'abnormal' but in the same way it is 'abnormal' to be a a grown adult and be just 5ft tall - which I am.

I've had very similar palpitations/flutters to you op.
I've had them for years and they really ramp up during pregnancy. I ended up at A&E at 35 weeks and they did an echo/ECG and all was fine.
I then had the 24 hour monitor and it showed ectopic beats which are minimal but obviously frightening (I suffer with general anxiety disorder) anyway so when they flare up it's a vicious circle unfortunately.
I have got better at understanding they are harmless, trying yoga, jogging and mindfulness - maybe that could help op?

I just think like another person said we are very aware of our heartbeats ☹️

it showed ectopic beats which are minimal but obviously frightening

Don't let them worry you they are actually a sign everything is OK. All heart muscle is 'excitable' so if the electrical system beaks down the heart continues to beat.

@sashh I had a scad in November, it caused a heart attack. Am currently being seen at Glenfield as they are researching scad there. Had an MRI last week and having a CT on Tuesday to hopefully find out if the dissected arteries have healed ok.

niper you are in good hands, do you mind if I ask which Cardiologist it is? Dr Ng?

Actually scratch that, far too identifying

no, its fine to ask, the specific Doctors names are all available online anyway from the Beat Scad website, I see Dr Adlam and Dr Wood. Was originally treated at Peterborough when it happened, then moved to Papworth for the angiogram.

Wow niper are doing the rounds of the best cardiology departments in the country.

I'm testing all the local nhs hospitals to see who has the best ice cream