Help all you people with AF.

[Lovefrance]

Hi there. Lovefrance here. I really need some kind words and reassurance at the moment. I went into AF about four o clock this afternoon. I still have it and my heart rate is 160 m at the moment. I have taken flecainide at 6. pm. I know there are lots of you out there who give me support . All you lovely people who give me lots of advice. It’s just that when it happens I am so scared and it sets me right back to worrying. Please talk to me.

[jeanjeannie50]

That's not a good rate to be at for so long, please dial the 111 NHS number for advice now.

Jean

[Lovefrance in reply to jeanjeannie50]

High there. Thank you so much for replying. I have e mailed my surgeon/ consultant. I am waiting for his reply. I saw him last week and he tells even if it goes that high, it’s not life threatening and will eventually return to normal.But it’s still really scary. I need people to constantly reassure me and it drives my husband mad. I do appreciate your reply and I will certainly contact lll if it continues.

[Loveswimmimg]

Hi there, I sympathise as I used to get this before I had my ablation. I’m assuming you’ve had episodes before and your heart has gone back to sinus mode eventually, so I’m sure it will this time too. Try not to get too stressed and anxious, just rest quietly so that you don’t put your heart under any more strain than it is already. As your consultant has explained, it’s not life threatening, but if it continues and you don’t hear from your consultant you could call 111 if you need reassurance, or you could call the HF nurses. More than likely it will just revert by itself though. Drink lots of water and take slow deep breaths. Have you discussed the possibility of ablation with your consultant?

[Lovefrance in reply to Loveswimmimg]

Hi there. I have had two ablations but didn’t work for me. I had a heart valve repair a good few years ago, which still has a slight leak. I have an excellentconsultant, who I know I can contact anytime and reassure me, which is great but the anxiety is still there and I guess will always be. I have to try and manage this for my husbands sake as well. I do drink lots of water when this happens and do some deep breathing. Many thanks for your reply. It is really appreciated and nice to know there are people out there who are listening.

[Hilianna]

I have AF which sounds similar to yours. My last bad episode was last year when my heart rate was up for most of the day, 160 approx. I rang 111 in the evening because I couldn't stand and ended up in hospital for the night. The rate was brought down by receiving a couple of bottles of digoxin via a drip. Usually my heart rate drops back down by itself after a few hours. I would ring 111 for advice and see where you go from there.

[Lovefrance in reply to Hilianna]

High there. Many thanks for making the time to reply to me.yes, I know what it’s like having to go into hospital with this and it’s very scary. I have spoken to my consultant and he said to take flecainide, which I did. Eventually it calmed down. But then of course I wait anxiously for the next one. Obviously We are all different and some worry more than others. I am afraid that’s me so it’s comforting to be able to talk on here. I hope you don’t get too many episodes and at least not have to go into hospital again. Thank you.

[meadfoot]

I think we are allowed to feel anxious when our hearts go off on one, its only natural for our system to react in such a way. Also i find arrhythmia events come hand in hand with anxiety as our nervous system goes into overdrive so please dont feel bad for feeling scared, the associated symptoms are scary.

I have tried many techniques, steady controlled breathing, listening to soothing music etc etc but in essence, for me, only going back into nsr helps be it naturally or via my flecainide pill in the pocket or on much needed occasions a trip to a and e. My heart rate goes into the high two hundred and nineties so i feel really dreadful and the chest pain and faintness is untenable.

When in nsr generally can you find techniques to calm your mind like mindfulness, yoga etc etc which may help you deal better when an afib episode rears its head and may help you offset any general heart anxiety. When you are in afib i think you can be forgiven for being in a stew.

[Lovefrance in reply to meadfoot]

Gosh. You sound as if you suffer greatly with this problem and I feel for you.It certainly makes you feel awful. Unfortunately my anxiety levels are high and have escalated since having my mitral valve repair, which was a good few years ago. You would think I would have learnt by now to control the fear but it’s never easy.I do mindfulness, take antidepressants and make sure I have a healthy diet and exercise.Also a bit of yoga. Obviously it’s my mind that need repairing.I am glad you understand how I feel and am very grateful

for your support. Many thanks.

[Driver11]

Hi, you have to look for the positives. I had CA in 2018 and Afib last year as well as an on going back problem. Went into Harefield for cardioversion and at the moment I am OK. You need to be positive otherwise all your problems can become completely consuming, don't let that happen, my wife also has vascular dementia and sometimes you do need support, mine comes from playing golf - good luck

[Lovefrance in reply to Driver11]

Thank you so much for replying.Yes I should be looking at the positives. This worry rules my life at the moment. To the point where I said last night, I don’t think I want to be here any more. My husband didn’t comment. He probably thought that was a good idea! I wish I could take a pill to stop the anxiety.I need to investigate some counselling. Tried this once but didn’t seem to connect with the counsellor. Maybe I should try again. Thank you again and take care.

[OrdinaryGuy]

Hi - Love France. AAlso one of my loves for lots of personal reasons over many years. Not sure if my experience of Flecainide and A/F will help you but I can but try with a little advice based on some 12 years of A/F experience. When I started on Flecainide some years ago the GP/Cardiologist did not explain as far as I can recall that I could take 150 mg in one go if an event started rather than 50 mg every couple of hours up to 150 mg maximum. Taking it in one go tends I believe to settle the heart rate more quickly. It is also possible then to take 150 mg again some 12+ hours later I believe. For my age range - over 60 when my A/F problems started and over 70 now there is a maximum per day - 300 mg I think - whereas younger patients may be allowed up to 400 mg per day. Read the Product information Leaflet in with the medication. Also consult on telephone with a GP or your Cardiologist. My A/F was classified as "Paroxysmal" - i.e. Intermittent and not "Permanent" even though I had events over some 10 years. Eventually my Cardiologist - Heart Rhythm Specialist undertook two Catheter Ablation Procedures 12 months apart and they seem to haven stopped my A/F events - for over a year now. However need some medications (Blood Thinners and Statins) still - but not Flecainide. My Cardiologist classified the successful Catheter Ablation Procedures as a "replacement" for Flecainide. Be politely persistent with your Specialists and pursue information and treatment where you need it. One doesn't have to live in fear of A/F events based on my experience but each event is unsettling. Best of luck.

[Lovefrance in reply to OrdinaryGuy]

Many thanks for your reply. This is interesting. I have not been told I can take a higher dose and taking the high dose at the beginning of an attack seems to make sense. I will ask my consultant about this. It’s good that your ablation seems to have worked. I had two and they didn’t work for me. Thank you again for this information. This could be a great help. Take care.

[MONIREN]

I feel for you, I used to have trouble with anxiety, I found writing my feelings down helped. I didn't need to show anyone, it just took it from my conscious self. Still find writing best way, even if you write what makes you happy. For pain, I imagine myself being an eagle doing a flyover of the grand canyon., silly thing is I've never been on a plane. Find somewhere else you can go, it might be a beautiful memory. There is so much to be anxious about, you have a few, but don't let it define you. Take care.

[Lovefrance in reply to MONIREN]

What a lovely reply. So thoughtful and gives me something to think about. I imagine putting my anxiety on a cloud and watching it float away. Yes writing thoughts down is a good idea. Maybe it helps to get things into perspective. I will give this a go. I must not let my thoughts take over. Easier said than done. I know I have a lot to be thankful for and do appreciate this. But sometimes the fear takes over. I guess we must not let the fear win. Thank you so much again. Take care.

[jeanjeannie50]

How are you now? Any luck with heart going back to normal rhythm and has your consultant replied to your email?

[Lovefrance in reply to jeanjeannie50]

High there. Thank you for checking up on me. I took 100mg flecainide at 6.pm after waiting a couple or so hours. My consultant said I did the right thing. My heart returned to normal round about 9.pm. But of course now I am severely stressed. I have to keep telling myself this is not life threatening.So, onwards and upwards. With all you good people out there, maybe I’ll get

my head sorted out eventually. Thank you again.

[jeanjeannie50]

Glad you're ok now. AF is a hateful condition. I used to feel that the hard, irregular and fast beating would kill me, but still here after 16 years of being diagnosed. Stress feeds AF, so please do your best to unwind. I know that's not easy. Used to take me several days after an attack to get some energy back.

[Lovefrance in reply to jeanjeannie50]

Hi there. Just wondered how often you have your episodes.You seem to cope very well. Do you suffer with anxiety as well.

[jeanjeannie50 in reply to Lovefrance]

My AF has changed over the years. I was diagnosed in 2005, but felt I'd had it long before then. Episodes were rare and generally lasted for less than half a day, but they would make me feel really ill and drained. Once I knew that the way I felt was caused by my heart I was frightened it was going to kill me.

My first ablation was in June 2011, after this I could walk up hills without my heart banging in my chest - I had thought everyone's did that, but my AF got worse and in June 2013 I had a second ablation. It did nothing to help and appeared to make my attacks worse and last for longer. I had several cardioversions, but attacks of AF could last months and I was hospitalised several times. At this stage I was told I could have no more ablations, but was offered a third in 2013 using a small new piece of equipment my EP and his Registrar had created, this one really helped. There followed a few years with AF attacks and then eventually I went into constant AF about 18 months ago. My heart soon became used to a lower beat of 60 -100 and since then my life has been so much better and I can lead a normal life and do long walks like anyone else. I was refused any more cardioversions.

I changed my diet drastically over the years and I'm sure this has helped reduce my symptoms. I eat and drink nothing containing artificial additives and have a more plant based diet I just wish I'd known to try that at the start of my AF journey. Then I may not have needed those 3 ablations.

Did I suffer from anxiety, yes in my early years I did. Attacks at night, where my heart would feel like it was trying to get out of my chest, made me think I would be dead by morning and I wondered how long it would be before I was found. I would text my daughter and ask her to check how I was when she got up for work.

Now I no longer keep checking what my heart rate is, because if it's not right I can be sure my anxiety will make it worse. If I feel ok, then I just carry on with life. I take Magnesium Glycinate and vitamin C to help calm my heart and it appears to be working.

Jean

[Lovefrance in reply to jeanjeannie50]

Thank you so much for that. You have truly suffered with this problem.I had a mitral valve repair at 60 and for a few years didn’t have any side effects. Then the AF began and I had a couple of ablations but they didn’t help. I now take Bisoprolol and Flecainide if the AF persists. I changed my eating habits last year because my cholesterol was high and drink plenty of water. I am not overweight so that’s good. I have heard about Magnesium Glycinate. Maybe I will give it a try. I do hope you continue to do well. You seem to have yourstress under control. It’s lovely talking to you. Thank you.

[jeanjeannie50 in reply to Lovefrance]

I buy my magnesium glycinate capsules from YourSupplements. Someone on this forum recommended them to me.

Jean

[Lovefrance in reply to jeanjeannie50]

Many thanks Jean. I will look into this.