Newbie here, asking when to call the doctor and what symptoms to just put up with. Plus detour for life story (Grab hankie or bucket)
Hiya all, I am still a newbie really and can't even begin to formulate all my questions as my situation is complicated by some other (rare and complicated) conditions.
If you don't want to read long complicated posts I don't blame you, and advise you to give this one a miss, and I will try to write a shorter clearer one. But if anyone is willing to read to the bottom of this I would be grateful, as I am just too confused to be brief and have spent hours on this already...
So, for the brave, here goes:
I am finding life so confusing with A Fib.
The two main reasons:
1). I have another condition alongside which gives similar symptoms, so it is hard to tell which condition caused what at some points.
2). I put up with the symptoms for over 40 years before getting diagnosed, so I hardly register that it is happening, and need to know when to call the medics and when to just carry on as normal.
At age 18, despite having been dragged to hospital with heart all over the place stopping and starting (we could just say 'irregularly irregular' but I am sure you know the terror of that first AF episode), and pulse 270 when they stabilised it, I was treated as a hypochondriac so I just had to live with the terror of frequent bouts of terrifying arrhythmia. I was frightened of fear itself, and completely messed up.
What I didn't know at 18 is that so many of my symptoms were POTS (Postural Orthostatic Tachycardia Syndrome), and many of these are very scary indeed, including (at that time) feeling your breathing reflex isn't working and having to concentrate on staying breathing... Yes weird and guaranteed to make you think you are going mad. (POTS is a kind of autonomic nervous system dysfunction. Autonomic nervous system covers the 'automatic' things like breathing, heart rate, blood pressure, sweating, temperature regulation, digestion...and my lifelong POTS was diagnosed finally in 2012 on testing at NHNN neurological hospital.)
So this is where reason number 2 comes in: the cavalry was not coming. After the first year of terror I had to get hardened to the tachycardia and periods of arrhythmias, and tell myself 'well you've never died from it, it's just panic'.
And my point is, I am now so used to bouts of arrhythmia that I hardly notice it, having just 'put up with' stoppy starty heart, plus fainting, blackouts, near-faints, shock, weird disorientation caused by swooping, plummeting blood pressure and many other things that (as my specialist confirms) are normal for POTS.
Stoppy starty heart? I eat those symptoms for breakfast!
(Sinus tachycardia has always been my daily normal, due to POTS. So walking from sofa to kitchen, feeling "hmmm that feels a bit fast" and finding my heart rate at 176 bothered me not at all. (Resting heart rate was usually 60 but standing or being upright makes it rise dramatically hence the name postural Orthostatic...)
And this is on fludrocortisone to raise the BP thus bringing down the tachycardia. It could have been a lot higher without it).)
Fast forward to July 2016:
Normally I just put up with bouts of persistent arrhythmic heart and tachycardia, but it dawned on me that if this bout I was experiencing was POTS, it would have been relieved by getting my feet up. (Note to self: D'uuh Boombiddy, the clue is in the name, Postural and Orthostatic!)
Well I had been on the couch with my feet up for over 3 hours now, heart rate (when I could count the beats, leaving out a lot of the 'extra' ones) was 196, 20 higher than I'd experienced ’normally' and I was out of breath and dizzy, no more dizzy than I usually would be with POTS, but dizzy lying down is not POTS, not my kind of PoTS anyway.
I actually felt apologetic ringing 111 for a little advice, thinking they might tell me off for wasting their time. They only sent a ruddy ambulance! I was diagnosed with AF, and kept in hospital for a week while they got me stable, and they ascertained that it was Paroxysmal AF.
It was such a relief after all these years for an ECG to register what was going on, and for the medics to hear those beeps going all haywire. Finally!
Anyway, still trying to get back to my point... I blame the bisoprolol...
Before I was discharged from hospital I asked the ward doctor when should I call medics? He said "when your heart rate goes to 120". I laughed and said "then I would live here, as it goes to 120 and well above, many times every day!". Then I remembered I'm now on bisoprolol which should bring it down.
(Actually now I have a low resting heart rate usually in the 50‘s, has been 45, but also still get 120 as above when standing a few mins or 140-odd if I use stairs, so I've now got bradycardia as well as tachycardia).
The hospital doctor prescribed the beta blocker because he reckoned that the tachycardia I experienced every day (from POTS) could damage the heart eventually. Otherwise I suppose he would have prescribed a pill-in-the-pocket approach.
He also seemed to assume that the tachycardia was a trigger for AF. But since being on bisoprolol I have had some periods of arrhythmia at heart rates in the 40‘s.
I asked one of my GP's when should I call the doctor. He said when your heart is at 180. (He is the surgery's mandatory useless GP though.)
I asked my own GP how long I should be in AF before I call the medics.
She said 10 mins then call 999. I thought "whaaat?” I said look I felt guilty ringing 111 for this...
She said ok, if it's just the arrhythmia and no other symptoms like crushing central chest pain, ring 111 after 10 mins, get yourself on an Urgent schedule so they ring you back in 30, and if you're still in AF they'll send a paramedic to check you out.
Otherwise (and she listed a constellation of symptoms), ring 999.
Now, on this site I see people saying things like "I've been in AF for 18 hours"...
And, quite frankly, since I've survived so far I find it very hard to take my symptoms seriously or think anyone else would.
So if my GP says 10 minutes and someone is saying 18 hours, what do I do?
Is it because those people saying "I've been in AF for hours" are safe from stroke because they're on anticoagulants?
(I'm not on anticoagulants cos low CHAD-thing score, (1 point for being female), under 60, no structural heart problems or risk factors. But I do wake up choking due to obstructive sleep apnoea and this doesn't appear to be counted in the score).
To those of you in persistent AF, I am guessing your the answer would be "No, never call the doc", or you'd never be out of hospital. So why should I call the doc when in AF? I really don't understand.
Well thankyou for reading this! It has taken me ages even to get to my question because I am so confused, and I really appreciate you sticking with me.
What do you think, what is reasonable?