When exactly am I in AF

Hi Pam143 - you are quite right it is comforting to know others are sympathising with your own suffering and share simlar problems, doubts and concerns and yet in many cases are coping very well with the condition - it gives hope that one day we may be in the same situation.  I am a way from that yet, still anxious about every flutter and chest pain, wanting to ignore it but the more you try the more you continue to self monitor and of course this feeds the anxiety further. I can cope with the physical aspects but need to get over the mental state of being frightened I guess to go very far or do the things I used to due everyday without any thought.  I cannot go on Beta blockers due to low resting heartbeat but I am on Warfarin - I went for this option because the newer drugs, whilst effective cannot be reversed quickly like Warfarin can in the event of an emergency, operation etc. I know many do not like warfarin but I have had no side effects at all with it - my gP tells me an ablation will not be offered until the drugs fail, not if they fail but when they fail. I am seeing a cardiologist next week after a 24 week wait. Lets see what that brings. I am determined not to take any drugs were the side effects are worse than the condition itself - what benefit are the beta blockers actually having for you? At least with the warfarin or whatever there is a real and essential benefit so may have to tolerate side effects, but like I say in my experience Warfarine is not problematic for me. I wish you all the best and anytime you want to talk, even if its just to let off steam get in touch. God bless. 

Hello again, Andy!

Just reporting back and wishing you good luck with your cardiology appointment, I hope there is some reasurance offered and, perhaps, some as yet unidentified positive way forward.  

I have chosen to take apixaban as an anticoagulant, after having talked to a friend who has had atrial fibrillation for 12 years.  He seems very happy with his medication and his lack of symptoms for the last six months.  He says he does not bleed more than usual if he cuts himself. He also says not to be worried by episodes of tachycardia unless you get chest pain and/or fainting or severe breathlessness.  Easy said!  Like you I find anxiety rising when tachycardia occurs, as it did yesterday when I was out walking.  HR 145 and anxiety sky high!  I ended up taking 20mg extra of the propranolol and, eventually after nearly two hours, the episode ended. That was a relief!  These episodes are getting more frequent, though.  I have found the vasovagal manoeuvres just don't work, have you tried them?  I am not really sure when to go to a and e with an episode that doesn't resolve quickly but am trying to avoid going as I haven't found a and e a pleasant or useful experience so far!

You asked what benefits the beta blockers give me.  None, if we are referring to the newer, cardiac specific ones such as atenolol, bisoprolol or sotalol though, I must admit, I was not on them long enough to find out how they affected the heart rate long term. I was getting a HR of approx. 45 on all of them except for sotalol which increased the heart rate to around 72.  The only one I can tolerate is propranolol, and that in doses too low to have much effect of the tachycardia, though generally the heart rate is slower.  Are you able to take calcium channel blockers as an alternative to beta blockers?  I suspect not, as they slow the HR too.

So, not a lot to report but just to say the impression I am getting from my friends with this condition, and the involved medics in my case, is that this is not something to be too frightened of, it is just a case of getting the medication right (it seems a personal recipe thing for each one of us) or having an ablation (and that is not guaranteed to work!).  

Keep in touch, Andy.  I would like to hear how you go on.

 

HI Pam

Was in Hospital again yesterday - very busy indeed so service was slow but always go into Resus so almost one to one attention - don't care much for 'majors'.  I was told to phone an ambulance if the HB goes above 120 and lasts for more than 10 minutes. I have always done that and always been told I did the right thing - but I just sit in Resus waiting to revert which normally can be anything from 20 minutes to 3 hours. They have never given drugs (thankfully). Yesterday I reverted in 75 minutes and the time before (18 days ago) in just 25 minutes whilst the the ambulance was still at the house but they still took me in. When I have the slow AF episodes - the heart is erractic but less than 100 bpm I sit them out at home. I always have mild chest pain with any episode - that is common I think purely from the excessive HB.  I have seen the cardiologist and he has given me Sotalol but the side effects seem horrendous and the common symptoms are the very things I already have and want to get rid of. Sotalol is also part beta-blocker. The cardiologist was arrogant to be honest - he kept saying 'its only AF'  which is perhaps all things considered no where as serious as the heart problems they see in others but I would have expected at least a degree of comfort or reassurance but none was given. I mentioned the anxiety side of the condition and he just said see your GP - then made me another appoinment for 8 weeks time - so tahts what I waited 22 weeks for!  Also said my both atrium were enlarged probably due to blood pressure - I don't have it, so then he said it was perhaps drink related - I don't drink so then he said I was probably born with it - so why I asked have I had no problems until now - well he said they will have enlarged over time - I just gave up. Hope you get on OK - I would query with your GP when to call an ambulance - 145HB seems high without exercise.

Sorry forgot to say I think the vasovagal manoeuvres only work with SVT not AF - I have tried them but they never worked. However, one time I went into Fast AF and after about 40 minutes the HB stuck at 165 and they said I had gone into SVT after 15 minutes they wanted to give me drugs (cardioversion) but I said no so they put my head into a bucket of ice and it all reverted within seconds. 

Well, the ice bucket treatment made me laugh!  Did anyone take a photo? Glad it worked!  The consultant sounds somewhat unsupportive.  Sotalol is a beta blocker, a full one not a part one.  I presume he took into account your low resting heart rate?  What sort of dose did he give you?  Have you taken any yet?  Might be worth double checking with your GP, if it causes worry or bad side effects.

Sometimes I despair at the supposed professionals who are quite casual about prescribing strong heart meds. and often at pretty high doses.  However, you may be able to tolerate them well.  That friend I told you about is on sotalol and is perfectly happy with it!  

By the way, for future reference cadioversion is an electric shock treatment to get the heart into a normal rhythmn (have I spelled that right?) and the drug alternative they usually give is, I am told, amiodorone which, I believe does the trick but gives some nasty immediate side effects.  I gather you haven't yet been offered an ablation?

i am sorry you have had more episodes, Andy.  I wish you success with the sotalol and, if that doesn't work, something else that keeps you out  of resus!

NO ablation the cardiologist said until the drugs fail (not if but when) - I said they are only 50% effective at contolling the rhythm for more than 12 months and he agreed but still said no ablation until it all gets worse. l challanged again saying I'd be a couple of years older, the condition will have progressed and it surely makes sense to nip it in the bud now - but still a no!  Its all about cost - cheaper short term to pay out for drugs than costly surgery, longer term it makes financial sense but of course the financial burden comes out of someone else's future budget.  The sotalol is 40mg, I have a GP appointment tomorrow to discuss it. I had heard the bad reports on amiodorone thats why I refused. With regard to the ice it did work but it actually 'burnt' my face - no photo's I'm afraid more's the pity. 

Just one question, Andy.  In case I want to try the ice bucket game at home. How much ice and how long did you hold your face in there?  Still making me smile!

I'll make you laugh even more - technically it was not a bucket but a bed pan - the bottom of which was about covered in about 1" ice - enough to cover most of your face - its the shock factor that makes it work. If you try it I would put a thin cloth over the ice to protect your face to some extent. It took just seconds - no more than 20. I was told to hold my breath at the same time. Worth a try. 

Thanks, Andy!  Will try it next time!