Just discovering all about AF

Just found out I have AF in November but not seeing consultant till mid February .i have been to A and E twice with allergic reactions to drugs given .i am now on Apixaban and Digoxin. Heart still beating up to 150 beats if walking about . Starting to feel like an invalid . I need advice to start feeling better I stopped alcohol caffeine spicy food still no let up . Worried and waiting for some good advice

29 Replies

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  • Your on the right medication. Should have a cardioversion soon

  • Hi Teresa, Not sure if you have AF constantly (like me) or recurring/remitting which I believe is probably worse. Its likely your feeling like an invalid is due to the drugs rather than the AF itself. Also its good you are seeing a specialist (of course) as GP experiences are mixed! Are you seeing an Cardiac specialist (good) or an Electro Physiologist (better) ?? When you go have a list of questions and near the top of the list must be what treatment pathways are available to you. Any kind of lets say hospital based intervention will only be offered early on in your diagnosis. You need to understand whether the professionals want to try and cure your AF (if that's at all possible in your circumstances) or 'manage' it (as mine).

    Caveat - we're all different and we all respond to the treatments and the problem in different ways. I will say that there a a lot of kind and experienced people on this forum who will chip in and help (including correcting me :-) if you have a question or problem.

    Though AF is not something you come across unless you have it, guess what it turns out to be 'really popular' and lots of people have it and get along with it

    Good luck, Gary.

  • Thank you for your advice .there is so much to deal with I have seen consultant who has changed mess so waiting to feel better . I am adjusting to sitting still till heart beat drops from 100 (resting)and then I will try and get an ablation done ASAP

  • Hi, sorry to hear you feel so rubbish. It is rubbish counting down the days to appointments where hopefully you'll get the help and advice you need. Hydration was a big thing for me - drink lots of water. You have already made lots of sensible life style choices by the sound of it. Take it easy and good luck.

  • Thank you I am taking it easy but 6 weeks is a long time

  • I agree. I was so pleased when my ablation was scheduled but after they found a clot had to wait 6 weeks to check again - and it is still there! So I feel like I am treading water. So frustrating!!

  • Hi there! It's not a happy time when you are first diagnosed but we've all been there. You may have several ways forward. Have you had an echocardiogram and a 24 hour or 48 hour ECG monitor? These are standard tests and provide useful information for your consultant.

    As Omniscient1 says, it's best to be referred to a specialist who deals with the heart's electrical system rather than an ordinary cardiologist. Are you in the UK? If so, you may be able to speed things up by making a private appointment.

  • I have booked a private appointment to see a consultant but would like some recommendations .I need to know where to go for best results because it seems very hit and miss . Thank ypi

  • This depends very much on where you live. Lots of places have good reputations.

  • I live in Brecon Powys South Wales but would be willing to travel

  • I think there are a couple of EPs in Cardiff.

  • Thanks

  • May I suggest you go to the AFA website and download and read the literature, know your enemy is the first requirement. The good news is there are excellent treatments for lone AF - apart from drugs - the bad news is accessing them in the present NHS crisis is variable depending upon where you live and there is often a long wait to see an EP - who are really the only people you want to treat AF,

    If you have any underlying conditions such as thyroid, diabetes etc then often if those conditions are well controlled, it helps the AF.

    The sooner AF is cardioverted back into NSR, the better but there are some people who cannot be cardioverted back into NSR and have AF pernanently, as has been mentioned, they arare e often less symptomatic than those of us who go in and out of AF. You will find many posts on here regarding living with permanent AF and those people say they do get used to it.

    The questions I would always ask, when you do get to see your 'specialist' is there experience and training and special interest; ask for the benefits and the risks of any meds that are suggested and ask about alternatives; ask about prognosis with lifestyle changes - the most important ones are managing stress, diet, sleep and taking moderate exercise.

    Look up the videos posted by Sanjay Gupta posted on this forum but also on YouTube for explanations and theory and latest thinking.

    Coming to terms with this condition and adjusting takes some doing, some people do get back to an active, full life, others need to adjust to a modified lifestyle but still enjoy life and live it to the full.

    Best wishes CD.

  • Thank you for your advice I realise I have to be patient and research all the facts .thank you for pointing out some direction to take . I am in the system but. It seems to be taking so long .Thank you again

  • As AF isn't life threatening it does take ages to see a consultant. Based on how bad you feel you might consider paying to see them privately which can be done this week. That will stop the worrying and hopefully let you get on with your life.

  • On my way to see someone who was recommended to me by GP but who is the best to go to .Need to find out quickly as I was diagnosed with anxiety 6 months ago so I need to sot this out fast .Thank you for replying

  • Hi Teresa. Good advice from everyone so far. One thing I'd add is whenever you have an ECG done showing AF in flow, ask for a copy for yourself. You're entitled to it and it can help down the line when you're talking to your specialist.

    Caroline

  • Thanks I will do that and I was just too much in shock at first .

  • Don't know if this helps or not,but I have ended up in A&E several times with bad reactions to drugs for AF,still looking for a suitable one

  • Glad it is not unusual .It was Tilidiem that brought me out on a rash .I now on Digoxin and this is making me feel sick and not sleeping due to weird dreams . Feeling tired in day but is this AF or drugs waiting to see consultant to clear up any problems I just want my life back

  • Hi Teresa, I wouldn't be happy walking around with a heart rate of 150 and I can certainly understand how ill that must make you feel. How long have you been on the Digoxin? It doesn't sound as though it's helping. I'd recommend going to see your GP to explain what's happening and requesting an ECG to see just what your heart is doing. I feel sure another drug may help you a lot more. Which ones were you allergic to?

    Jean

  • Thank you I have been on Digoxin 4 weeks after being allergic to Tilidiem and the consultant who changed them said there was only one more to try which had more side affects .

  • Digoxin made me feel dazed, tearful and scatty. I've never felt that way in my life and I also had vivid dreams like you. I'd never, ever take it again. However, I've heard of people who get on really well with it.

    Jean

  • I have seen consultant and he is changing my drugs as heart beat at rest too high .I now in persistent AF so no point of cardio version so ablation seems best choice

  • I've had cardioversions when my heart has been in persistent tachycardia and AF. Is your heart racing?

    How are you feeling?

    I'm glad to hear your Digoxin is being changed. I hate that drug for the way it made me feel. What we have to go through eh!

  • Seeing GP after seeing consultant who confirmed I am in persistent AF and said no point in having cardio version

  • Hi there are at least 2 E.P.s at The Heath Cardiff. I see Dr Peter O Callaghan who also does a private clinic at tbe Spire. I got fed up waiting for a general cardiology appointment ( 8 month waiting list ) so paid for an initial consultation and was then put on his N.H.S. waiting list for an ablation. I had to wait nearly 9 months for an ablation but in the meantime he put me on flecanide which effectively controlled the A.F. and I felt that someo e was in control.

    Good luck x

  • I have been to the spire and new drugs prescribedNd now decided to go for ablation thank you

  • So pleased Flecanide worked for you,I was on it for nine years,when my body regected it. Still looking for a replacement. I too had problems with Tildium and digoxin,another 2 I tried

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