Update from a newbie

[val757]

Encouraged by all your replies to my first post I started to take control rather than letting the AF control my life. It was going well with the reduction in the dosage of bisoprolol, buying the AliveCor app to check ecg readings, being reassured by the online videos by Dr Sanjay Gupta, starting a magnesium supplement and trying out a much healthier eating plan lacking in processed foods. All going well until yesterday evening when I had another major paroxysmal AF event resulting in another trip to hospital.

I already had a follow up appointment booked with my GP this morning so I went along a few hours after being released from hospital. He's increased the level of bisoprolol again but this is likely to lead to the same side effects as before, but he has also referred me to an EP (and thanks to everyone who suggested this) to discuss the possibility of ablation.

I think it's going to be a harder challenge than I hoped but I'm more positive now I'm armed with information to help make decisions for myself.

So that's my advice for any other newbies - get as informed as you can to help you decide what what will work best for you.

As before, any advice and information is very much appreciated, and thanks for all that has been sent my way so far.

[BobD Volunteer]

Sounds like you are taking control Val. Well done as it isn't easy. Unfortunately AF is like that and almost always progresses so good call on the EP. In time you will learn to cope much better with events and unless you have chest pain or fainting should be able to avoid hospital visits. For the most part they are pretty pointless once you know what is going on and as the saying "goes AF won't kill you it just feels that way."

Keep reading!

Bob

[Gracey23 in reply to BobD]

Bob, I'm so glad that you remarked about unnecessary hospital visits. In the first couple of years after diagnosis I ran to the ER everytime I had an episode. They would hook me up to a monitor and come back and forth checking me. I remember one time I knew episode passed before they knew! I'm sure if symptoms make you feel particularly awful then go but I've found I do much better relaxing at home. I'm fortunate that my PAF resolveswithin 24 hours unlike others who deal for days and weeks.

[BobD Volunteer in reply to Gracey23]

Yes Gracey and here in UK the A and E doctors are so over worked that they can be less than charitable to people who go in just because they are in AF . If you are trying to get a diagnosis or have chest pain then of course but after that I could never see the point. They seldom if ever do anything other than observe and unless you are on anticoagulants are unlikely to do a cardioversion. Some people get very distressed by AF events and find being at hospital comforting and I can't argue with that but I never went after diagnosis myself.

[Gracey23 in reply to BobD]

Bob I totally agree. At the beginning I got very nervous so being at hospital was comforting plus my family members always panic. The most stressful thing for me is trying to relax through an episode whole family is looking at me like I'm dying. It's hard to explain to love ones bc unless you've experienced AFib no one gets it!

[BobD Volunteer in reply to Gracey23]

So true Gracey. Some years ago I had plans to develop an AF vest rather like a male pregnancy vest that we could strap people into and make them understand what it felt like. Inflate it round the chest till they could hardly breath and they started to go grey and then start a vibrator to shake them about. The first people I would try it on would be doctors! Too many other things in my life so it never got down but never say never.

[Gracey23 in reply to BobD]

Great idea Bob! I have people I'd like to try it! In the meantime we wil get on the best we can. Thank goodness for this forum !

[val757 in reply to BobD]

Hi Bob and Gracey

I have had a few early episodes where I've been able to go to bed, relax and let it pass, and I agree this is the best way if possible. Looking back I think I had several such episodes before knowing what they were. I avoid hospitals if at all possible but unfortunately these last two times I have collapsed or fainted and others have called an ambulance for me. They've only lasted a few hours but have been very severe in nature, and that's not me exaggerating or panicking unnecessarily, it's not my nature. That's why I'm so keen to find a way of minimising the number of these events or their severity if I can. But it's early days and I still have a lot to learn, both in terms of the condition itself and the best way of managing episodes when they do happen so I'm happy to take on board any advice.

[CDreamer in reply to val757]

Val I was able to stay at home and 'ride it out' about 98% of the time but then my GP told me very precise criteria of when I should dial 999 - syncope (fainting) which starting happening because of very low BP (70/40 or on several occasions less) - this would put up my resting HR to near 200. If resting HR was 200 or near; if an episode lasted more than 24 hours after taking drugs & I was still symptomatic; if there was any pain or I felt cold & clammy and shaky.

I think all together (8 years of frequent PAF) I called 999 3 times, was monitored twice and ended up in acute coronary care for 3 days once.

Getting a balance of when you need to go to call 999 and when it is safe to stay home and ride it out is really important to know.

I had 2 ablations, 2nd of which was successful and since then my BP is usually over 100/60, which is the highest it has ever been, I feel so much better!

[val757 in reply to CDreamer]

Thanks so much for that. It's reassured me that I did need to be taken to hospital on both occasions, both times my heart rate reached 200 and I was faint and cold/clammy. but it's also helpful to know that I can just stay at home and sit it out if those things don't apply. I'll let my family know as well so they don't worry so much.

[val757]

Just wanted to add that my experience of those two occasions in hospital has been that the staff have been very understanding and rather than just monitoring me I've been given beta blockers intravenously to reduce my heart rate as well as anti emetics. Different hospitals on each occasion. Maybe I've just been lucky - or unlucky depending on whether that's good practice or not. I don't know enough to tell, just know that it's helped and I've been keen to go home as soon as possible afterwards because I can relax better at home.

[BobD Volunteer]

I think that if you are blue lighted into A and E they do tend to take a bit more care than if you just turn up and say "I'm ill. " As I have said before. there is no question that A and E is the best bet if you have any chest pain or fainting/dizzy. If you ever started to out stay your welcome I know they would soon tell you . There is a history of this reaction over time on here where people have been told "you just have AF it won't kill you go home" and some departments have constraints of what treatment they can actually give unless you are passed on to MAU.

For reasons other than AF I once needed a cardioversion, requested by my consultant in London. The cardiac consultant at my local hospital moaned so much about having to do it that you would have thought he was paying for it himself! I found it hilarious as did my London man when he received the winging report a few weeks later.

Not everybody is a saint.

[JonathanPittsCrick]

One way to take control of your AF is to discuss with your cardiologist having "pill in the pocket" treatment. Especially with flecainide it can be very effective to take this plus a short-acting beta blocker (e.g. metoprolol) only when you have an attack and this will usually settle it within a few hours.

You can also take it when you feel your heart getting jumpy (ectopic beats) or in a situation when an attack of AF is likely e.g. a virus illness or extra stress or "accidently" drinking more than a glass or two of wine.

It is very important to get anticoagulant treatment if the attack hasn't stopped in a few hours. If you are going away on holiday you could also have a "pill in the pocket" supply of one of the New Oral AntiCoagulants (NOACs) to safeguard against blood clots until you get home.

[val757 in reply to JonathanPittsCrick]

Hi Jonathan, thanks very much for your reply. I have my first cardiology appointment on 15 March so will ask just those questions.