I wrote a post earlier in the year, 62, F, previously with paroxysmal almost unnoticeable AF. I’d developed persistent AF and had been recommended Apixaban - CHADS score 1 but with a Leiden V factor homozygous diagnosis, and couldn’t decide what to do - I’m now taking it. I’ve also reduced my thyroxine meds as they seemed to precipitate the persistent AF.
I have settled into persistent AF and up till 2 days ago it was largely asymptomatic with a heart rate varying from low 80’s to occasional 100 and no issues when I exercised. Then after a long, but what I’d call easy cycle, followed by a large meal, my heart rate was higher - around 120-130. It was a horrible feeling and I ended up taking Propanolol 20mg which seemed to help. This happened again yesterday - with really very little cycling and not a big meal - it was a similar pattern, in the evening I started getting the horrible feeling again and my heart rate was up. I took the Propanolol again but went into a serious panic attack about the whole thing, about dying, absolutely terrified as I’m alone and it took all of my self control to settle my breathing and calm myself down enough to sleep (sort of) - I managed around 6 hours but the bed clothes do look like they’ve been through the tumble dryer ! I’ve been using my Kardia sparingly until 2 days ago and it’s definitely AF with varying heart rates above 100 but less than 120. My rhythm is all over the place.
I’d like some advice as to what to do. It’s Easter to weekend and the thought of ending up in A&E with a skeleton staff is more frightening than anything. I am on Barts waiting list having had my appointment delayed from Feb to July and I’ve made an appointment to see a private consultant at the AFcentre in London, recommended by someone on here, a Professor Schilling. I can’t afford a private ablation, (£15-22K) depending where you go, but I feel desperate enough to see what he can offer me. Previously I saw a private consultant ( in 2020) when it was paroxysmal and his advice was to take to start on anti-coagulants, he put me on his Barts list and we’d see how things panned out. Things were fine until the beginning of this year when I started on the higher dose of Thyroxine but dropping to a lower dose has made little difference. Sorry, this is long but I’d appreciate any advice. I am pretty frightened. Thanks
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I know this is hard but seriously AF wont kill you. Normal heart rate is 60 to 100 to you have been quite normal for some time despite what you may think. 120 is not that high either but I do know how scary it can be.
You should I think be taking the beta blocker all the time so guess you were given instructions on dose etc?. Dont try messing about with the dose. Take your daily amount but no more. Right now your aim should be to control your panic. Understand this will pass. Stay well hydrated, breath deeply and slowly from your diaphragm and relax.
Only if you have chest pain, fainting or difficulty breathing or if your rate goes much about 180 for any length of time is it appropriate to seek medical attention and as you mentioned, not an ideal time to go to A and E if this can be avoided. Most times all they do is observe and send you homw when the rate falls.
Regarding the future, Richard Schilling is one of the top EPs in London and will advise you well. Worth a visit for sure.
Hello and thank you. Your words are very reassuring. I did find the breathing techniques helped enormously last night. I am doing them daily, I just ran away with myself last night with worst case scenarios running through my head and feeling like a very frightened child.
I’m waiting for blood tests results for my thyroid to see how it’s stabilised and hopefully that’s the case. It’s been fine for years and this Increase was to try and counter the slight rise in LDL I had last year (lockdown baking and increased Calories methinks!)
My GP had given me beta blocker 10mg Propanolol to have in my pocket but the Cardiac consultant (2020) told me not to take them because I had quite a low heart rate at night. I still have them and used them as the GP prescribed - if I need to. I am now checking with him again to see what his advice is.
I do have a little chest pain but I’m not sure if it’s anxiety or real. I injured my left shoulder in a bike crash in 2010 and it plays up occasionally so the stress of this might be playing out through that. Hard to tell.
Thanks for replying so quickly - I do appreciate it so much and for the input about Prof Schilling. That’s made me very happy.
Met him many times through the Association and various committees we have been on and he is very no nonsense. He is the lead EP at London AF Centre and Barts and has trained many EPs who have spread across UK.
Hello BD, lots to digest in your post but when you live on your own, it’s quite understandable when the problems mount up for folk to get extremely anxious. Let’s try and break your concerns down into bite sized chunks and maybe things will not seem so overwhelming. I guess your biggest concern is about dying. Well the bad news is yes, you are going to die sometime, but the good news is that it’s not going to be due to your AF. I’m not medically trained and do not know anything about Leiden V factor but assuming your Doctor was aware of this, it’s unlikely they would have prescribed Apixaban if they thought it was inappropriate. Therefore the biggest risk associated with AF, ie stroke is significantly reduced. As I mentioned in a previous reply you have to try and get your thyroid stable as this affects AF as I explained earlier. Delays in seeing Consultants are frustrating but you will soon be seeing one of the best UK EP’s and you are already on Barts waiting list so you have to try and accept that you are in the best possible hands for receiving the right treatment for you. Although your heart rates can be just outside normal range, they are nowhere near being dangerously high so trips to A&E shouldn’t be necessary but even if they were, it’s unlikely that it would be as difficult as you are imagining.
I think you are in need or reassurance and hopefully when folk read your post you will get it in bucket loads and this will help you to overcome your anxieties which are perfectly natural……howzabout a non medically trained hug!! 😉
Thank you for your kind response. I am very freaked out and just writing it down on a forum where people understand because they’re going through it really helps. I am trying to stabilise my thyroxine - waiting for test results and I do use breathing techniques etc (which helped last night). Tiredness makes it all seem much worse and I know that my big fear is that I’ll have to stop doing all the things I love - exercising and being out and about on my bike being my main thing.Leiden V factor is a genetic predisposition to blood clots - homozygote being worst and heterozygote being the one I have - 3-5x more likely than normal population (but still very low likelihood)
Thanks for your feedback. It’s really helped me to refocus.
I find that essential oil of lavender on wrists and sniffed up, one nostril at a time whilst deep breathing helps to calm me down and brings my bp down too. Good luck.
Yes, I do use this and keep It by my bedside. I will endeavour to use it more. When my brain goes into panic like it did the other night I forget all the ‘tools’ I have at my disposal. My breathing exercise do really help. Cheers
Relax, that’s what ☺️ You’ve got appropriate medication, you’re fit from the cycling etc so your heart should be well able to cope with 120 - I’m a couch potato and survived peaks of 160 although it wasn’t pleasant.
However, if you have a squeezing type pain like an interior hug in your chest or neck you should go to A&E because things can go the other way round - a circulatory problem ie blocked artery can cause AF - sorry to be scary but I have to point that out 😬 ❤️🩹
You have taken a lot of right decisions already! I would reduce by half but not stop the exercise e.g. maybe a 30 min walk rather than cycling. I would try to tune in more to what your body is telling you, maybe try varying your eating pattern. For anxiety I would suggest interact with Nature in a way that appeals to you the most, also try Mindfullness, yoga, prayer (if you have a faith) and remind yourself you can stay in control with persistence one day at a time with an overall aim to come out of the 'AF tunnel' healthier with various lifestyle changes than you went in. I went into 'the tunnel' 8 years ago with Factor V Leiden Hetero and thanks to Flecainide and Lifestyle changes I have today great QOL.
Hello. I am not medically qualified but was interested to read comments about Dronedarone, which may be more suitable for my vagal AFib (low HR typically, AFib at night- after exercise or a heavy meal, etc.).
I currently take Bisoprolol 1.25mg and 100mg Flecainide two hours before exercising. These are low doses but quite symptomatic for me. From what I understand (see below) Dronedarone is a potassium channel blocker and does not decrease the conduction velocity, as beta blockers do, and maybe more suitable for my low HR?
Please don't experiment yourself and get professional advice.
"Class III agents predominantly block the potassium channels, thereby prolonging repolarization.[11]
Since these agents do not affect the sodium channel, conduction velocity is not decreased.
The prolongation of the action potential duration and refractory period, combined with the maintenance of normal conduction velocity, prevent re-entrant arrhythmias. (The re-entrant rhythm is less likely to interact with tissue that has become refractory).
The class III agents exhibit reverse-use dependence (their potency increases with slower heart rates, and therefore improves maintenance of sinus rhythm). Inhibiting potassium channels, slowing repolarization, results in slowed atrial-ventricular myocyte repolarization.
Class III agents have the potential to prolong the QT interval of the EKG, and may be proarrhythmic (more associated with development of polymorphic VT)."
From reading your post, I wonder whether you aren't suffering mostly from what is entirely natural anxiety? I can't know, of course, but can relate to sufficient of what you say. The first thing I would do would be to pay for a private consultation and cardiac MRI, to be sure there's nothing obvious going on. There is very unlikely to be, but this will relieve your anxiety more effectively than any other method in my experience.
The symptoms you describe are not (as I see it, having similar ones but without the background of permanent AF) especially worrying heart-wise and I suspect might well be treated with a "PIP" beta blocker such as 1.25mg bisoprolol, with your doctor's consent, of course. This is slow to act, it's true, but in my case gives me about 36 hours of normal heart rate and reduced anxiety from the mild tachycardia.
Thanks Steve , this is all very helpful and i Will discuss it with my GP. Currently I’m on Propanolol 10mg as PIP and this is the first time I’ve felt the need to take it. I don’t know much about the different beta blockers so will read up about it. Happy Easter weekend
Hi Mary - from what I have read, propanolol is as good as any but has a less selective action so might cause other side effects as there are beta receptors here, there and everywhere, I gather (including in the lungs and intestines). Bisoprolol, metoprolol and nebivolol are all newer and more "cardio selective".
I suspect that your GP will probably react as mine does with a kind of unworried, almost uninterested, air and suggest taking an extra beta blocker as needed.
In truth, I suspect doctors know quite what is happening as the heart is so massively complex and at the cellular / conductivity level nigh on impossibly so; but they do know it's unlikely to lead to anything important. Previous echocardiograms, and the like, are what they need to have this assurance, though, I reckon.
Try some mindfulness. My Fitbit app has some I can access but there is plenty available free online that you can download. Make time each day to spend maybe 15 minutes with this. It will help your breathing and help you relax.
Thanks Suzy, I have been doing more of this and it definitely helps with the anxiety/panic around my diagnosis. My very fit and ‘active person’ brain is finding it difficult to accept the limitations imposed by AF. It’s a slow adjustment for me and quite a scary one. A work in progress…..Happy Easter
HiI'm taking Thyroxine too - thyroidectomy Feb 2020.
After a stroke in Sept 2019 and displaying AF persistent and rapid I was not under control of AF until private specialist introduced CCB Calcium Channel Blockers. Diltiazem - my h/rate dropped 50 h/r.
I had Thyroid removed because of para..THYROID CANCER also 12 lymph nodes -2 affected right.
I never obtained 'suppression TSH'. I refused large dose of thyroxin to get me there. I was LOW RISK.
I refused Radio Active Iodine. THE BREAKTHROUGH is that RAI should not be a 'given' for LOW RISK cases.
Also my surgeon and I read from American Thyroid Centre (Head to Neck Centre) that I should live my life with a TSH of between 2.0 and 3.0 TSH. Don't worry about theT4 level. It will fluctuate as I try to balance my TSH.
I began with an uncontrolled h/r on Metroprolol of average 186 daily and night 46 h/r average.
Then still uncontrolled AF on Bisoprolol 156 daily with 47 avrage at night.
Controlled on Diltiazem 120mg a.m and 2.5mg Bisoprolol at night.
BP 123/70 and h/r 93 during the day.
I still stop on exertion after stairs, elevation or hard task.
Since 2020 after cancer was removed the medical team were hoping that I would revert to normal h/rate. I am 73 and no such luck.
It appears to be my lot.
I take 125mcg Synthroid (150mcg if TSH elevated) at 5-6am
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