Need a plan!!

Good Afternoon!

Sorry not replied earlier spent the weekend with my other half, he is so depressed about his diagnosis felt a bit guilty coming on here and bleating about my problems but he has gone home now so I can research away – he has surgery next Friday to remove the tumour so I need to be as fit and sane as possible for then!!

Firstly a huge thank you to you all, again – I really don’t know what I would do without this site and looking at everyone’s posts – I am on the Facebook one but it seems to be mainly Americans’ and I think they do think differently to us .

Anyway, I need to try and get in control. I think what is making me so anxious is that I am getting so many different opinions from professionals about what to do when AF strikes. My experience of A&E is that I never want to go again so that is good!! What worries me is that when in AF my heart rate is soooo fast 140plus for hours and hours, I have had 6 professional opinions ranging from leave it 2 hours and up to 24 hours before going to A&E. One guy in Bradford A&E said I am risking heart failure if I leave my heart racing that long for more that 4 hours ARghhhh – it’s no wonder I am confused!! I feel like I will be in more control if I have a concrete plan so I am going to see my Doctor, who I trust completely on Wednesday and have rang Dr Fays Nurse Shona Harding and I am going to see her next Wednesday for a chat. Then I am just going to listen to their advice of what to do.

So, I am now on 1.25 Bisoprolol daily and 100mg pill in the pocket Flec when needed. I feel more confident with the Flec.

It has sunk in at long last that AF will not kill me and I am okay now to ‘ride it out’ as long as it buggers off and I am hoping and praying that when AF kicks off again the Flec will work again. Is it likely do work magic again if it has done previously? Finally as I had 2 really bad 24hr episodes (without Flec) last week is it likely that they will keep coming again or could they just go away like they did for 5 weeks?

THANK YOU ALL SO MUCH!!

xxxxxxxxxxxx

20 Replies

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  • Glad that you are feeling so much better now. You are right in now seeking a plan that is right for you so that you won't panic next time.

    You will have gathered by now how we are all affected differently by this condition and many of us have our own plan in force to deal with it when it strikes.

    Who knows when AF will strike again......keeping stress free will help many but is easier said than done. Do try and get as much sleep as you can and eat sensibly. I find over tiredness affects me to a big degree. In fact I was in AE last week & needed another DC cardioversion to put me back into NSR

    Hope you stay well now and that everything goes to plan for your partner this week.

    Best wishes

    Sandra

  • Thank you Sandra, I am going to have a stress free day I have decided!!! Yes I think its the uncertainty that is driving me mad - I am doing my best not to use my Alivecor!! I will calm down when I have a definite plan of action from my Doctor who I trust.

    xxxx

  • Yes, get an action plan agreed with a doctor who talks sense. We are all different but I have never had AF go on and on and it has always responded to flecainide sooner or later or stopped on its own. I used to take 300mgs of flecainide routinely every day, so the level of medication you are on is, I think, quite low. You probably have a lot of treatment options available to you with proper help. AF is fickle stuff and may come and then go for ages

    I have been to A & E but have not had much joy and have not been there for a long time.

    Two years ago when I was struggling and quite low, my other half was diagnosed with cancer and was on poisonous medication and had a course of radiation and personally I found it quite helpful to feel that my problems were actually relatively trivial in comparison. His medication was nasty but short term and mine was long term but much less unpleasant. We are both so much better than we were then.

    Good luck!

  • Thank you for sharing that and I am so glad your are both better even though the road to it was horrible. Yes I feel my AF is nothing compared to how he is feeling and I am doing my best not to worry when he is around. In a way the AF diagnosis is a godsend as I was dependent on alcohol in the past and I know that if i wasn't so damn scared of drinking due to the AF I would have no doubt be drinking to oblivion right now. Life is strange sometimes!!

    xxx

  • Every cloud has a silver lining - AF sure makes us live a healthy way!

  • Hi Rellim, I noticed on your other posts you live near Kendal, I used to live in Tebay and how I miss the beautiful countryside! xx

  • Oh, not far away at all. The colours are lovely in the rain at this time of year - if it's not too grey and gloomy.

  • I would be very grateful if you would let us know exactly what advice is given to you.

    I have never received specific instructions about how to use flecainide as a p-I-p and this is what interests me most. Some people appear to take megadoses and I would question the wisdom of this

    I take 2.5 bisoprolol daily, at night. When AF starts I wait for 30mins to check that it is established then take 100 flecainide. So far this has stopped the arrhythmia within an hour or so. On the odd occasion that I have suspected that an episode was starting, when I was at work and it was inconvenient to feel rotten, I have taken 50 flecainide.

    I always bear in mind that flecainide should best be taken on an empty stomach. I always have flecainide with me, in my wallet and by my bed - that gives me confidence to deal with the AF with minimal fuss.

    Good luck with your consultations.

  • Hi Jenny, Upon escaping from A&E the cardiologist said to take Bisop as normal and if I feel AF starting wait half an hour and take 100mg Flec and if it doesn't go away in 4 hours go to A&E - He said DO NOT take anymore.

    I am seeing my Doc tomorrow and my AF nurse next Wednesday and I will let you know what they say - I will take notice of them more xx

  • Thank you for that. It would appear that I am doing the right thing - advice gained from this site.

    Be warned that getting flecainide out of GPs here is like getting blood out of a stone. I have managed to secure a reserve and I suggest that you do too as you never know when you will need it

  • Hi Jenny, My doc said really what A&E said last week - take one and if it doesn't work A&E - everything crossed it will work!

    Thanks for the warning on the shortage - I mentioned it to be doc and he gave me 60 so that should last as a PIP - Although the only had 56 in the chemist!! xxx

  • Thank you for that.

    I don't have such a bad rate problem as you do but if I were to go to A&E every time I have an episode then they would be sick of the sight of me. If I had pain then I would go but I have never had any.

    Flecainide is working well as a pip at present and post-ablation my AF is mild. I have tried 50 but think that 100 is more effective.

    My experience is that taking to my bed and sleeping it off is the best way to proceed. Staying calm and being patient is a big help.

  • Yep I had a good chat with my doc today and it's a matter of only going when I have to. They are just concerned about my rate been so high for so long. I never want to go to A&E again in Bradford and I am happy to stay at home - it's slowly, VERY slowly sinking in that it won't kill me when in AF!!

    xxx

  • On the other hand if you do go in to A&E then it will be on record as to the instances. That way you may be be pushed higher up the waiting list for an ablation. This is because of the continuous high HB which as you correctly say thay don't like.

    Don't forget to get a copy of every ECG that GP or hospital does and keep up t in your file. If you don't have then all at the moment write and ask then to send you a copy of every one!!!

  • Just to confuse the issue further, my EP has told me to go to hospital within 48 hours.

    I take bisoprolol and Flec daily, even though my AF episodes are rare, so am interested that you use the Flec as a pill in the pocket. I would like to take fewer pills so will ask about this.

    I hope all goes well with the surgery on Friday.

  • Thank you for your good wishes for next Friday. Yes its sooooo confusing - I want to ask if I can take 50mg and if it doesn't work take another 50mg. say an hour later. But to be honest I have no idea what to do so will just listen to my doc and AF nurse until I see Matt Fay xx

  • Boo boo 73- you need to see an Electrophysiologist

  • Hi Buddji, Yep I know - I am going to see Matt Fay in January who specialises in AF and see what he comes up with. I need to control this as much as I can xx

  • Dr. Fay will sort you out. He's my GP but wasn't when I started with AF nearly 20 years ago. I was diagnosed about 12 years ago and was put on 150mgs Flecainide twice a day about 9 years ago. In my case I reckon that coffee, not caffeine, is a trigger as is soya, so I've not had a cup of coffee for 8 years, or any soya for 5 years. I 've had 4 episodes in the last 3 years, 3 lasting 30 minutes before I went to bed, and one lasting 2 hours in the evening. I'm sure that the one longer episode was because I forgot to take the Flecainide on time twice in succession.

  • Hi Thomas, Thanks for the info - I can't wait to see Dr.Fay - he sounds fab. I am seeing Shona the AF nurse next week who is also lovely. Its quite a way from my house but certainly worth the trip. Also sounds like Flec works for you, I am praying it will for me when I need it!! xx

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