Help needed (SVT, bradycardia, arrhythmia generally)

Hi,

I’m 33 years old and in a bit of a quandary. At 26 I had an episode of SVT completely out of the blue (240bpm), no prior heart issues or symptoms, and did the fun old adenosine jaunt in A&E. I was kept in for 8 days, put on sotalol, but my hr would still jump massively in the immediate aftermath (190+) even just talking normally. Echo was normal and no cause for my SVT has been found. The attack occurred within the UK but in the IOM, so when I came home I had to get referred to an nhs cardiologist. I had a couple of 48 hour halters, another echo, ETT, but the very first thing they did was switch me on to bisoprolol. Again, nothing ever found, and other than occasional minor bouts, I’ve only had one other major attack requiring intervention. For the first 3 or 4 years afterwards I suffered with palpitations a lot (had a 4 week halter without finding anything), occasional achy central chest pain, and I’m quite often physically aware of having ectopic beats, but over the last 12 months things have changed and I’m wondering if anyone else has had similar experiences.

Back in June I came over really dizzy, shaky and feeling generally very unwell. After a couple of bouts I used my sp02 monitor and discovered my hr was down around 40bpm when it was happening. My normal resting rate is around 75/80. Eventually ended up in A&E after a couple of days, and I had a very ‘funny’ turn whilst hooked up that had the alarms screaming but unfortunately staff had put me in a side room and were dealing with multiple patients in resus and majors. It’s happened once before, and I can only describe it as waves of the feeling you get when they give you adenosine. Afterwards I was freezing cold and shaking like a leaf and I felt exhausted in the way I do when I’ve had a major episode of SVT for a good few weeks afterwards. They kept me in for 6 days (not because of my heart though), stopped my bisoprolol for the duration and then sent me home on a reduced dose stating that where I’ve lost massive ammounts of weight my dose just needed titrating to compensate.

Since then I’ve been having bouts of symptomatic bradycardia with increasing frequency. They sent me home on 2.5mg, I halved it to 1.25, but that didn’t help. A month ago I stopped taking it completely, which actually resolved the bradycardia, but after 3 days I had the familiar impending sense of oncoming SVT with accompanying tachycardia so I took a dose and promptly ended up feeling like I was going to keel over again an hour later with a low hr. I’ve now been back to the GP and they’ve referred me back to cardiology for a halter and review, but basically told me to continue messing around with my meds in the meantime (as I have been for the last 3 weeks) to balance controlling the tachycardia, reducing the bradycardia and hopefully keep me out of A&E. But I’ve also become aware that when I am symptomatically bradycardic at rest, if I do so much as scratch my head my hr shoots up by at least 30bpm. If I walk 10ft across a room I hit 120-130bpm, sometimes higher, but when I stop it immediately drops back down to 40-50bpm. Even when feeling ok and my hr is fine, it’s still shooting up madly with even small movements. All my gp could tell me is ‘well, that’s not normal’. I’m getting palpitations at both ends of the scale, I can feel my heart in my chest when it’s slow, and pounding madly when I move, and I’m experiencing achey pain in my chest on a daily basis. Unmedicated I apparently have ‘the bp of a triathlete’ so Bisoprolol has always caused me to have a ridiculously low bp, to the point that when I was in hospital once they were giving me fluids most mornings before realising the meds were to blame and that it was probably actually normal for me, and it also means I suffer with OTH quite badly, but I’ve never experienced any other issues before. Healthwise, I have some neurological issues, including an ongoing query csf leak, but I generally consider myself fit and well.

Anyone have any thoughts, advice or experience of something similar? Any help would be very gratefully received whilst I wait for my cardiology appt.

TIA,

Charlie

[Spatz76]

Hi Charlie

Sorry to hear you aren't feeling well, you sound like you've got a lot going on.

I thought I'd share my experience with you as it has elements of similarity to yours.

I started feeling really dodgy a couple of years back after a particularly stressful house move. I started getting pains in my chest, got breathless when walking and felt faint and lots of palpatations. I also had lots of funny heart "twinges" which I now know to be ectopic beats, in particular the late ones. I'd convinced myself I was having a heart attack. I wasn't.

After having a million and one tests and loop recorder implants x 2 and genetic test over a period of two years I was finally diagnosed in the summer. I have something called PCCD (Progressive cardiac conduction defect).

My symptoms include every rhythm under the sun. Mainly bradycardia but i have an unusual amount of ectopic beats, atrial flutter and fibrillation and ventricular tachycardias. Although my heart rate has never got as fast as yours I do feel when my heart randomly starts to race even if I'm just sat on the sofa minding my own business. It took a while to diagnose as my heart is structurally normal and my ECGs sometimes shows sinus rhythm despite the crazy arrhythmia I can get. It was a case of having to catch it doing it's thing. It was a bit of a mystery at first. Once I had a pacemaker fitted though the extent of what was going on became clear. My heart conduction is playing up as I have a sodium ion channel mutation which means my little heart sodium gateways don't conduct correctly.

This mutated gene is present in my Mum and my identical twin sister but neither have any problems with arrhythmia. We don't know why mine has presented itself so extremely in me, I clearly get all the bad luck!

Has your cardiologist not mentioned a loop recorder? It might be worth asking about getting one implanted to catch what your heart is doing when it goes off on one.

Hope this helps. Keep me posted.

Spatz76 x

[Hidden in reply to Spatz76]

Thanks for the reply, it’s really appreciated.

One of the problems I have and that I think causes issues for quite a few people with palpitations initially is an extensive mental health history. Mine was in my teens/early 20s so I’ve been completely well for several years now, but a lot of docs take one look at my notes and see 10 years of psych problems and immediately say my palpitations are anxiety without any tests beyond an ecg after the event. On occasion in the very distant past they *have* been, but I can’t fall asleep when it’s anxiety and I can fall asleep when this is happening, even if it is after thinking ‘well, if I die in my sleep, I die’. Sometimes I’m waking up the next morning to the same symptoms continuing too. It’s not like I don’t have a cardiac condition. There’s also extensive familial cardiac history across the spectrum of heart disease, and my grandmother had a pacemaker fitted under the age of 50. I’ve basically just learnt to ‘ignore’ most of my palpitations unless it’s SVT or I feel really unwell, because A&E don’t generally take me seriously unless I’m obviously bleeding or unconscious. Given the last time they told me something was all in my head I ultimately ended up having two brain surgeries (oh the irony), I’d hoped they'd learn, but unfortunately not. Thankfully I have a decent GP who knows that I’m neither anxious nor a hypochondriac, quite the opposite in fact - I’ve been told off several times now for not going to them sooner.

Other than during active SVT, my previous traces have been fine with normal sinus rhythm and no irregularities. The 2 ambulatories picked up my heart rate elevating quickly for no reason, but as it also dropped down quickly they said it was nothing significant. Structurally my heart is fine, but other than an ecg last week I haven’t had any tests for 6 years. I’ve been doing some reading trying to see what might be the cause and funnily enough, PCCD was the only thing that jumped out at me as explaining the tachycardia, bradycardia and huge fluctuations in hr. I think I’m just going to have to lay all my cards on the table at Cardiology and see what they’re willing to do in terms of testing - I was discharged over 6 years ago and haven’t been seen by them since. A&E did see that I was Bradycardic on admission even if they missed my funny turn, the gp also took my pulse when I was low last week and then after getting me to walk across the room where it was suddenly 120, so there is evidence at least that there’s something going on.

Before you were diagnosed, was it normal to feel exhausted after big episodes of arrhythmia? Post-SVT I always struggle for a few weeks and sleep a lot, though I’ve been told that’s normal? After a really rough 4 hours last week, I found exactly the same thing - I’m doing the school run then sleeping for 3 or 4 hours, sometimes unintentionally, and then needing to nap (or falling asleep in the chair) after picking sprog up too. It’s one of the reasons I’m certain there’s something going on beyond my bpm being all over the place. It’s just not a nice experience overall, as I’m sure you know, and I’ve been told it could be up to 3 months for a non-urgent appt.

Thanks again for the reply.

Charlie

[Spatz76 in reply to Hidden]

Hey Charlie

Sorry it’s taken me a while to reply.

To be honest my arrhythmia is never for that long, it’s very erratic and all over the place. The longest arrhythmia I've had was AF and it was for 4 hours. I ended up in A&E and by the time I was seen my bpm was back at 50. It’s a good job my pacemaker picked it up or I would have looked like a hypochondriac for the umpteenth time! I understand 4 hours isn't very long compared to other people though.

I would say, yes, I was definitely tired after the event but if I'm honest it was more the worry of what was happening that probably gave me an adrenaline rush and then crash. Having said that, if you are in AF a lot doesn't that mess with the oxygen levels in your blood/organs and therefore make you tired and generally grotty? It probably explains why you feel the way you do.

It’s difficult isn't it when anxiety plays its part, because all the worrying is unbelievably tiring. Until my heart condition diagnosis, it was something I didn't suffer with. I was often told I was so laid back I was almost horizontal. (Those were the days! 😊) When I first started getting panic attacks I didn't know what was happening to me. It was the most frightening thing that has ever happened to me and that’s saying something after once experiencing being wide awake as an op was going horribly wrong. I was tired all the time because of the 24/7 worry. I can understand why the NHS folks sometimes think it’s that you're suffering from as for me a least, it definitely was a factor at times. It doesn't make you feel good though when they say its anxiety and it’s not true. My ICD has my back though and records everything.

Good luck getting the right diagnosis for you. It took 2 years to get mine, hopefully it won't be as long for you

Spatz76 x

[Hidden]

Sorry to hear about your problems but I have been on Bisoprolol 1.25mg for about four years now with no side effects.

[Latchmead]

Hi Charlie, everything in your post is identical to my symptoms. Sorry are you make or female hard to tell now days from your name? I'm a 53 year old female and I've had every test concievable to determine the cause of my bradycardia and SVT. They even considered that mine was due to perimenopause which has now been ruled out. I've never had any heart health issues prior to my first SVT episode in May of this year. I was in hospital for 11 days during which time they could tell me what I didn't have. No thyroid problems, not diabetic, blood pressure and cholesterol are fine, angiagram showed good blood flow and no blockage in arteries. Tested for abdominal aortic aneurysm which was also fine. I have daily palpitations and my heart rate can go as low as 42 and then jump to over 200 bmp in a few seconds. I'm more aware of palpitations when my heart rate drops. I've not had an SVT episode that was bad since August. My cardiologist is at a loss as to why this is happening and I wondered if you had been given any answers? I'd be interested to hear if you have received am explanation. Thanks P.