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?

Nipers sounds like you may be in my general part of the wood. I was treated at Addenbrookes but my docs were mainly based at the Papworth (Prof. Morrell and Dr. Toshner - both Cardiopulmonary).

Just looked up what you had - blimey, do they know why it happened?

WineandSunshine - GAD is a bitch, I totally empathise. I do mindfulness but yoga and running are out at the moment due to my knee op, hope to be able to in a few months though.

sashh - hyperaware of my heartbeat, yup! Also that way about my breathing at the moment. Hoping CBT will help.

I'm in Rutland, so kind of squashed in between Leicestershire, Lincolnshire and Cambridge. No warning before the heart attack at all, it happened while I was making packed lunches before school. I knew something bad was happening, and it freaks me out to think I know what a heart attack feels like. No heart disease or high cholesterol, as the name suggests, it just happened spontaneously, 2 arteries in my heart dissected. It's quite rare but does affect mainly women, possibly hormone linked as it quite often occurs after child birth or peri menopausal. It's taken a long time to recover from.

Oh Nipers that sounds horrendous. And completely out of the blue like that. I understand the feeling of now knowing what it feels like, I've been struggling with the feeling of, well, a loss of innocence/ignorance for want of better words, no longer being able to have the "oh, everything's fine, it'll never happen to me" attitude and unfortunately that has developed in to a bit of hyperawareness/paranoia about my health as I feel as though I can't trust my own body anymore (been diagnosed with generalised anxiety disorder and PTSD).

Ended up in A&E on Thursday as I had one of my super exhausted days (sometimes wake up like that) but this time almost passed out in Boots. Pharmacist sent me to the GP, who sent me back to A&E. Saw the lovely doc who treated me when I was initially admitted who ran the usual PE tests - had a mini meltdown when my ECG said possible ectopic atrial rhythm and funny t-waves (it was referring to lead 3 I think) but she said it was a load of crap and my ECG looked good (and actually the leads that normally show the dodgy t-waves weren't anymore). Anyway, all tests were normal and she sent me on my way telling me that she concurred with my GP re my palpitations, that I was suffering from anxiety and deconditioning after being bedridden for the best part of 6 weeks and to go on holiday and have a drink (she was adamant that I do the latter and referred to her colleagues and the BNF to check I could whilst taking my blood thinners :)). So after a horrendous journey (I loathe flying) after only getting 3 hrs sleep in Thursday night (had to pack and was so tired I couldn't get to sleep!) and being super worried that my heart would play up on the plane (the only thing it did was speed up when I was anxious in the end) I am now in Turkey - trying to relax!

Awww OP have a lovely holiday (I know it's hard to try and relax with GAD) but I really hope you can.

Let us know how you are when your back home 😁😁 x

Have a lovely holiday, take it easy and relax, I find my breathing rates sometimes set off flutters. If it happens, sounds simple but coughing helps settle it back down x

You've had loads of good advice already but my two pence.

20 years ago, I was you. My palps started when I was pregnant. Had the usual ECG, all normal. I was terrified but a bit comforted by my GP saying that he was too nervous to have an ECG himself (!) but if he did, he'd want to see the exact same result I got.

But they didn't go away, and the more scared I was the stronger & more frequent they got. Every time it happened (especially when it was several in a row) I would shake, go hot and cold, get an upset tummy etc...full on panic.

My reasoning was...it's my heart. Hearts aren't supposed to do this. We all know that if hearts lose their rhythm you can die. The only reason doctors don't know about my serious heart condition is because the bad rhythm doesn't happen when I am being monitored.

But...cutting a long story short, I spent a long, long time researching ectopic heartbeats reading absolutely everything I could including proper medical research papers that I barely understood.

The upshot is that, 20 years on, they no longer bother me in the slightest. I still get them..sometimes quite a few a day, sometimes in runs, but I cough and forget them. Because THEY ARE NOT DANGEROUS in otherwise healthy hearts.

Think of them like hiccups. Our bodies aren't "supposed" to hiccup, it's an unintentional consequence of something else and are unpleasant and annoying. But they don't hurt us and we tend to sit them out without worrying.

Your heart is hiccuping. It's that simple. And as Sashh says, they are actually a good sign clinically because they are demonstrating that your heart is able and capable of maintaining a healthy rhythm.

Read, read, read OP....these type of arrythmias are inconsequential, are not a consequence of heart disease, are never a cause of death in otherwise healthy hearts and cannot (as in it's IMPOSSIBLE) cause heart attacks.

Your heart has had every test available and it is healthy. Hold on tight to that.

Good luck. I know what you're going through, but you WILL come out the otherside