Thanks for all the well wishers after my cryo-ablation at Stoke. The first 3 days were fine with just a few palpitations. The next two weeks were a nightmare with 5 visits to Burton Queen's A & E with heart rates varying between 170 and 75. Increasing volumes of Bisoprolol and then Sotalol were prescribed but seemed to make little difference. Finally Amiodarone was administered intravenously. I protested my previous experience with it wasn't good but an anonymous cardiologist said there was no choice. I've never seen a heart monitor drop to zero before and hope never to again! Combined with major light headedness I experienced pauses of the heart. The nurse told me the longest was 6 seconds. They set me up for a manual pacemaker while I slept as I was unsure what was going to happen. I made sure to drink lots of water to clear the amiodarone out of my system overnight and it returned to some normality. They put me on 120mg of Sotalol twice a day and sent me home saying they wouldn't be surprised to see me again shortly. Well apart from the usual skipped heartbeats and bigeminals it seemed to settle a bit and the 48 hour monitor they organised ran out of battery after 10 hours so I can't think it told them very much. Since then, I've heard nothing from them. It seemed to settle a bit and I started to feel more optimistic but since last Sunday I've been plagued constantly with missed heartbeats and bigeminals again. It seems to ease if I exercise gently into NSR but as soon as I stop it starts off again. I've not had a good refreshing sleep for three months now and I'm not sure what to do. Are constant ectopic heartbeats normal? I realise I'm only two thirds of the way through a normal blanking period but it is difficult to hold down a full time job and concentrate at work with a heart that constantly misses beats - sometimes every other, sometimes 2, 3, 4 or even more before skipping. I thought I'd try and carry on but after a week of it it is beginning to get me down. I've continued with the Sotalol but found 80mg three time a day was better and am also on Pantoprazole for excess acid plus Apixaban as an anti-coagulant. Oddly enough, it seems to be worse when sitting or lying down although it does strike standing up too. I've also added five Kg to my seventy seven Kg weight at the time of the operation although my eating habits haven't changed. This is my first ablation and am wondering if this is normal and that there is light at the end of the tunnel. Before the op I was suffering fast AF nearly every night so it is an improvement but, as others have said, constant ectopics and bigeminal heartbeats are almost as bad. At least, before, when not in fast AF my NSR was normal and reliable.
PS Nice weather for the time of year!
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Have you tried the slow deep breathing exercise for the ectopics. Use stomach not shoulders. Pull down to breath in and squeeze up to exhale. Try to pull your stomach back to your spine on exhale. Max six breaths a minute for minimum five minutes. Longer if possible.
Hi Bob. Thanks for the quick reply. It's strange - I have tried breathing as you suggest but even if I can resume NSR, as soon as I sit, or lie down, it starts again within a few minutes. Sometimes sleeping on my left side helps a bit but it's still results in a not refreshing sleep even if it's 7 hours or so. Sometimes I thought I was slipping into bradycardia but a single track ecg shows two quick beats together (bigeminal?) which the oximeter doesn't register. It's very difficult to ignore.
Hi - no I don’t think your experience is ‘normal’, that all sounds quite traumatic but multiple ectopics are quite common and can continue for up to 9-12 months following ablation and I found them very uncomfortable but the doctors don’t seem to be at all concerns out them if your HR is within normal range and you aren’t very symptomatic.
A lot of people report being left to their own devices following ablation and feel very unsupported, which is why this forum is so useful.
If you haven’t tried Bob’s breathing techniques - do - they really do work!
Hi CDreamer. Thanks for the reply and I have responded to Bob's suggestion. Perhaps it's worth a call to the, sorry A, GP to arrange an ECG and hope they can catch something? At least it would provide some reassurance as it's definitely adversely affecting QOL. I'm not a great fan of Sotalol or Pantoprazole but don't feel I can change anything without GP or cardiologists' advice. The arrhythmia nurse said she'd leave it in the capable hands of Burton's cardiologists and was only a trainee anyway. As you say, this forum is invaluable in sharing experiences and you do feel very unsupported and try to resist the desire to call 111 or go to A & E.
After my Stroke I had no after care even though I had breathlessness and fatigue with Metropolol.
Aftercare is so important to get Drs to listen to the good and bad outcomes.
cheri JOY. 73. (NZ)
Do you know if there is an Arrhythmia Nurse attached to your hospital. They are generally very knowledgeable and helpful with an problems post ablation and also should have direct access to your EP……..
Hi Flapjack. The phone number given by Stoke for the nurse proved to be of little help as they had retired and the number given to someone else unrelated to the cardio department. Eventually got hold of someone at Stafford Hospital but they were a trainee and were very quick to pass me off to the "expert cardiologists" at Burton Queen's so not much success I'm afraid. After the fifth visit to A & E the Burton Cardiologist did say he would write to Stoke as he felt they had washed their hands of me but that was five weeks ago and not heard anything since.
You have had a real time of it. So sorry. The Arrhythmia Nurse idea sounds a very good way to go. I am a great believer is slow deep breathing and if you can combine this with sniffing a really good essential oil of lavender it is even better. Sorry cannot be of more help but good luck
Hi GrannyE. Thanks for that but not much help from the nurse as above reply to Flapjack states. It's just about bearable during the day but night time is the worst with the disturbed sleep and tired in the morning feeling. Will try the lavender oil instead of the Olbas oil I have been using though.
I have oblas oil as well as lavender oil and tea tree which I use regularly for my deep breathing but lavender is good for calming. Not sleeping is the worst. Have you tried putting the radio on very quietly (classic FM works for me) on a sleep timer? It can help you to drift off and even if not some music can be calming. There are also Apps which purport to help you sleep but they don’t do much for me. The middle of the night is the worst. About time you went back to your cardiologist and ask him/her to jog the hospital. Also phone hospital and ask why you have not heard. I find a bit of pestering sometimes does not com amiss. Good luck
Classic FM sometimes and a US station called Sunday Baroque available on internet radio - lots of choice although internet radio is out of fashion I love my Roberts radios! You said it - tried my GP this morning and he suggested phoning cardiology at Burton who said I was due a phone call in October but they could bring it forward to September. Try Stoke....answer machine so far! Amazingly my cardiologist from Burton did ring and suggest increasing my Sotalol to 280kg and, if that fails, 360mg. I still have some Bisoprolol so if all else fails revert to that and see how it goes. He did ask for the consultant at Stoke's name and proposed writing to him so you're right about pestering but it goes against the grain! He also suggested the monitor suggested something difficult to control by ablation and it would have to be adjusting medication to tackle - very hit and lots of miss! D'oh!
Aren't I lucky in that my rapid, persistent heart eate is now controlled when CCB a Calcium Channel Blocker was introduced. H/R went down to 51 in 2 hours.
As I don't feel it except on exertion I am NOT agitated.
With balanced meds Diltiazem 120mg a.m and Bisoprolol 2.5mg p.m it suits and brings me down to 77-88 day. 180mg was too much.
I am controlled on meds and the Auckland DHB Cardiac Specialist explained that any Ablation door is closed because I have a chamber enlarged.
Neither the private specialist, Dr or other DHB specialist told me that. It was too old and slightly overweight but big boned.
He told me straight that I would always have AF.
I will always need to take PRADAXA 110mg x twice. day.
Take my balancing meds.
Having had a stroke with AF, discovered with a shadow on my thyroid during my carotid arteries scan. I have almost 3 years between ambulance rush, a thyroidectomy and 12 lymph nodes removed with 2 affected, 4 months later.
I have had 2 clear scans for cancer returning. and take thyroxin (synthetic hormones)
125mcg daily on empty morning stomach under tongue and wait 1/2hr - 1 hour for breakfast. A must for absorption and changed to Synthroid which is more reliable.
The surgeon agreed 2.0-3.0 TSH level best.
Yes I declined RAI (Radio ActiveIodine). I was LOW RISK and too much thyroxin is bad for your heart.
And I declined being in Suppression.
I take Solgar (gold top) 2 days running 1 x cherry nugget under tongue. This keeps me @ 400-500 level.
I hope others get to a balanced place like me.
I have never been into alcohol so haven't taken any since the stroke2019.
Also March 2 I had my Johnson & Johnson TVT Kit mostly removed.
With all the inflammation gone my energy at last is returning and I need to challenge myself a bit more day by day.
I have COLOFAC for constipation
POLY-GEL no preservatives 4 x times a day for NO WET LAYER.
Hi Joy. Greetings to the other side of the world. I'm only (!) 64 and used to walk 10 miles a day and comfortably do my 20,000 steps a day until this year. Recently, I'm reluctant to do more than 8, 000 and usually much less which hasn't helped with weight. I was hoping to retire and wander around some hills and stately homes in 15 months or so but, at the moment, little energy and not feeling comfortable with the continually skipping heartbeats. The cardio suggested it was something difficult to treat with an ablation and we would have to juggle with meds only. It is difficult to feel positive but I can see you're in an even worse predicament with meds and treatments than me. It must be difficult to keep up with all those different meds. NZ is a beautiful country and I hope your energy returns so you can get out and about and enjoy it.
JAZ? Not sure where that is! I'm in the Midlands near the bottom end of the Peak District between Derby and Birmingham. Have plans to move further north when retiring towards, but not as far as, Scotland. Don't know Devon well and only holidayed there once in the 90's but I remember it seemed full of Londoners and people from Birmingham and was quite busy. Need to go back there sometime as missed most of the stately homes and gardens as a National Trust member. A camper sounds a good way to explore wherever your fancy takes you.
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