And now what!!!

 

25 May 2025

I’m not sure if I mentioned this before, but in late March I had a run of tachycardia while mopping the floor.  Just about five minutes, but I contacted the Papworth Arrhythmia nurses to see if I should still try to wean off of the Amiodarone drug (reminder – I had 18 months of only one arrhythmia issues while on Amiodarone from Feb 2023, but was persuaded against my will to have a fourth ablation in order to get off of it as it can be very toxic long term).

 The nurses said to still come off of it so we could gauge if the Ablation #4 had worked.  You may recall I had about 10% confidence it would, but had allowed myself to be swayed by medical advice.  And so, on the 3^rd April I took my last Amiodarone.  Within five days I was having short runs of tachycardia – 1-2 minutes, these were happening zero to three times per day.  This continued and I began to believe perhaps it would stay like this as something that was a small price to pay. 

 These episodes continued at the same rate (except one day I had eight, but I kept bending over and that was causing it) even through the SCAD excitement (see previous post).  They were captured on ECG as Atrial Tachycardia and delayed my discharge after the SCAD.

About 6.5 weeks after I stopped the Amiodarone (and 2.5 weeks after the SCAD) the runs of tachycardia got more bothersome – over three days they went from the 0-3 per day up to 9, then 18, then 24.  These were particularly problematic when I laid down to sleep (or afternoon nap as instructed by my “Returning to Fitness after a Heart Attack” brochure!)

 On that day with 24 episodes, I had decided to chase up the Cardiac Rehab and had a very long consultation with the lovely Cardiac nurse.  Obviously, a SCAD is very rare (0.31% of heart attacks – even though it is not technically a heart attack) and HHT is also very rare (1:50,000 diagnosed; 1:5,000 estimated to have it, but mainly undiagnosed) so I was a bit of a puzzle – then when I told her about the tachycardic episodes she said she would have to “discuss me at the multi-disciplinary Team meeting”!  As I know from my work with people referred from their GPs for exercise, unstable conditions are a no-no.

The consultation was a real downer actually – after praising me for religiously following the walking programme (started with five minutes, built it up to 10 in week one, build up to 20 in week two) and me asking her a load of questions - Can I do very gentle yoga and back exercises? Yes. Can I do foam roller? No! Can I use my electric bike on top power? Yes, if you can keep it easier than walking.  Can I do my physio exercises for my rotator cuff? No etc.  This seemed to freak her out and she took ages telling me I needed to rest and not overdo things.  I think the main issue was the SCAD chest pain I was getting and in particular the fact I was walking almost as fast as before the SCAD and (confession) with no warm-up or cool-down.

 To be honest, I had done a lot around the house the day before (cooked my first dinner, moved around a bit more) and was very tired that day.  So, I was beginning to understand that my heart needed 4-6 weeks of rest (except walking) so it could heal the SCAD. 

 Quick Aside – a SCAD is a Spontaneous Cardiac Artery Dissection – i.e. a little flap or bulge in the arteries which feed the heart muscle.  These can vary in severity and mine had resolved itself as I was swooshed onto the Cath Lab table.  There was only a suspected site of the SCAD on the angiogram and blood supply by then was good.  I will be referred to the Glenfield Hospital in Leicester to see the British SCAD specialist in the future, mainly to help with research as I think I was lucky enough to be treated by one of the best heart hospitals, Papworth, so I think I’ve had all the scans I needed).

 Back to the tale – I was also getting a fair bit of SCAD pain – feels like indigestion/heart burn.  I’d been struggling with my moods too – I just couldn’t believe that after six years in which I had had four ablations; four nose ops; 15 episodes of Afib requiring A&E care (11 of them requiring cardioversions) that I now had this totally unrelated SCAD thingy going on. 

 Joining the Facebook SCAD pages didn’t help as they all seemed to be people who had quite serious outcomes (the HHT page is the same – most people on there are very badly afflicted by it.  Afib pages are the same too people, like me, who have had bad outcomes – it’s a self-selecting sample – those who get better do not post because they are busy doing nice things!!).

 So, the evening of 22 May (6.5 weeks after I stopped the Amiodarone tablets, 2.5 weeks after the SCAD) and after two days of steadily worsening Afib/tachycardiac episodes I went to bed and, as usual, the AF/AT started straight away.  I feel asleep and it must have calmed down but when I got up at 12.30 am to use the loo and then laid back down, it all started again.  It was like it for 20 minutes before I got up, hoping a change of position would help.  It didn’t so we decided I would have to go to A&E (again!) as the SCAD chest pains were worse.  I intuitively felt that the body being shook about by the AF was not good for the SCAD. 

 We had mucho debate about whether to go to the local hospital (good for A&E, bad for long term Afib treatment – twice I had been left for  5.5 weeks in Afib due to their reluctance to electrically cardiovert) OR the big teaching hospital an hour away (A&E always packed, but have been cardioverted within a few hours of arriving before which greatly increase the speed of recovery, although I was  not sure they could do a cardioversion if I had a SCAD?!?!?!?!?!?)

 The latter won, but it was a scary ride – the chest pain was getting worse and there were roadworks everywhere (no actual work going on, natch, but plenty of traffic light controls).  My husband broke many speed limits and got me there in 40 minutes.

 I was admitted – my Heart rate was 150+! They decided to administer main-line (IV) amiodarone.  I sent my husband home (about 4 am) and forty minutes later I stopped being wracked by those terrible AF/AT quakes (it literally shakes my whole body – my husband can feel it through the mattress when sleeping next to me!!).  Bliss! I was so happy I just laid there and smiled.  Although a few hours later I thought about what a waste of time the six months recovering from Ablation #4 had been AND the SCAD and felt very sorry for myself.

 They kept me in for a while – chest Xray and visit from Cardiologist (or “Heart Doctor” as he quaintly called himself).  He was lovely and explained that the Afib and the SCAD are completely unrelated, but the Afib would make the SCAD pain worse as latter is caused by pericarditis (inflammation of the sac, or bag, which encases the heart).  In his words “Your heart cannot heal from the SCAD while it’s beating at 150 bpm!”.  He said I completely did the right thing by coming in so soon (It was only four hours from onset of Afib/AT until the chemical cardioversion).  And he told me to go back on the Amiodarone tablets – sigh!!

 So discharged and, to be honest, have felt cr*p ever since.  I expect a SCAD then four hours of fast AF/AT will do that to you.  I’m faint and tired and swinging in mood from upbeat to total despair!