Any Advice for the newly diagnosed?

My suspected PAF diagnosis has just been confirmed following a stint in hospital at the weekend during which the ECGs showed clear AF. I have been told to take bisoprolol, Zarelto daily plus Flecainide as a pill in pocket strategy. What I am not clear on is whether I should go to A&E during an attack or sit it out at home. My episodes usually last around 12 hours. Last weekend was the first time I tried A&E. They were amazing, admitted me straight away. Gave me 15mg of Metroprolol IV and bisoprolol 2.5 and monitored my pulse until eventually it switched from 160bpm to 65 after 12 hours. I find the whole thing rather terrifying and there seems very little information on what to do during an attack so any advice would be gratefully received. Thank you.

29 Replies

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  • Hi Londonant

    As you may know an AFIB attack is usually not life threatening, but we all know it is "hell"! Like every little bit of strength is drawn out of you!!!

    Have a plan - it will reassure U. Something like "If I'm still in AF after 3 hours I go to the A&E", or call someone and inform them of your attack and they must just be on "standby".

    Is it a typical attack - same as last time?

    I reluctantly say - stay calm and relax - I know it's difficult, but I think panic makes the whole thing worse.

    Some people do some moderate exercise, I know I have done it, maybe out of panic. It has helped me, and it's helped others too. But it can also make it worse! People react differently.

    Ice on the back of your neck.

    Laying down and do deep breathing exercises - you must feel or see your stomach lifting as you breath.

    Vagal maneuvers, like deep breathing holding your breath and then pressing down on the diaphragm. But first talk to your doctor or get expert advice before you do ANY of the the Vagal maneuvers.

    Other forum members may have better or other advice about the vagal/vagus maneuvers.

    Never stay in afib for too long! The longer you do, more difficult to get out of it. "AFIB begets AFIB"

    I hope you get lots of responses.

  • I wish I had read your post before writing my reply. I agree wholeheartedly with your sentiments. Can I ask, I am newly diagnosed with this, what does an episode feel like ? I have had panic attacks so I know how awful they are. I just wonder if my AF was the actual reason for this panic ?

    Thanks in advance

  • Jools52

    I've had different types, of AFIB attacks, depending on what meds I was on.

    Mostly mine where a racing heart, going up past 200bpm at a time.

    Other times it was like a "flopping, fluttering fish" (like many people describe it) inside my chest. Fast, then a few hard beats then a pause, then fast again.

    In the beginning there was an episode when I did not even know that I was in AFIB, and the doctor told me I was in AFIB!

    I'm on bisoprolol now and the last time I was in AFIB, it was more of an uneasy irregular heartbeat, not much faster that my regular pulse. A few "hard/powerful" heartbeats then faster then slower....... well irregular.

    Some of the times it was difficult to distinguish if it is a Panic attack or AFIB.

  • Thank you very much. This makes a lot of sense and has really cleared up a lot for me.

    I really appreciate this reply

  • Sounds very similar to mine, I wasn't sure if my speeding pulse or my thudding heart were both types of af, that has cleared up my concerns thankyou

  • Phone up BOTH your GP and also the cardiac nurse at the hospital you were in and ask about time AND heart rate AND blood pressure. Then use the LOWEST for each. However time is not the only consideration.

    Also key is what your blood pressure is doing. You should get a proper cuff monitor. As far as I know only the Microlife WatchBPHome A (A is for AFib) is accurate. That also gives heart rate (HR). HR Accuracy is pretty good but not as accurate as an electronic device but remember most hospital recordings are using a cuff monitor rather than electronically (eg an ECG).

    For most people the BP goes high.

    Also the normal HR when not in AF compared to being in AF is key I was told. People's normal rate is typically in 60 to 100 range and that is considered normal. So for someone whose normal rate is 60 but when they are in AF it is 150 that is 2.5 times high. However if normal is 100 then they are only 1.5 times high which is a big difference!!!

    Similarly BP increase is important. My normal is typically in the 90 to 105 over 60 to 70 range whereas someone else could be 130 / 90.

  • I just went on flecainide 5 days ago and found that my episodes are getting fewer everyday. Much better today. The half life for flecainide is about 12 hrs with normal metabolizers. May have to have meds adjusted for correct dosage for you. Im seeing my EP Thursday. Hoping things improve for you. I also have rx for xanax. That seems to help me through Afib episodes. The episodes stress me out. Which is not good for afib

  • You don't say what part of the country you are in. Do a bit of research and read the (Google) NICE Atrial Fibrillation Management Report Guidance and Guidelines of June 2014 updated August 2014 No. 180. This drops all your AF information into a neat box. Then Get in touch with the (Google) Atrial Fibrillation Association and sign on. Email them and ask for the nearest hospital carrying out catheter ablations of the heart. Your objective is to get to your most expert ELECTROPHYSIOLOGIST at the hospital advised by AF Association. He or she is a cardiologist with the specific training in electrics of the heart. Either work through your Doctor to get an early referral or if you hit A an E again with AF ask for the services of a Electrophysiologist there. Read as much as you can on the subject. Keep in touch with this blog site.

    I started AF in 2008 set off I believe by prescribed Bendroflumethiazide. 6 cardioversions, all the drugs, all the tests, lost time at work, endless hospital visits, a pace maker and 7 years later my problem was resolved by catheter ablation here in the Leeds General Infirmary which is where I should have been in the first place. A trip to a hospital in Norway in 2010 indicated that AF standard treatment there was Catheter Ablation. AF is progressive the occasional bout turns into longer periods until it becomes permanent and becomes more difficult to reverse. This weakens the heart. The ordinary cardiologist seems to forget this. In my case I felt like a Guinea Pig and certainly cost the NHS and me wasted time and money.

    It's important to get to the right guy and the right hospital. Good luck. Dave.

    If you are in the York and Leeds area come and join our support Group next Saturday the 30th July at the Nags Head, Askham Bryan, Just outside of York. A very informal group we meet at 12.30 PM for a bar lunch and Drink!

  • You can look at all the EPs yourself by going to the AFA website, selecting heart rthythm specialists then filtering on those who do AF ablations ands that gives you all the EPs sorted by location. Then you can choose and research.

  • I didn't want to hit 'like' because I am angry on your behalf that you had to be a guinea pig. I am glad you got the help you needed in the end and this post was incredibly helpful to others!

  • I think the question of A and E is very personal and depends a lot on how each of us deal with having AF. It also depends a lot on one's experience in the game and one's ability to rationalise during events.

    I never went to A and E after my initial diagnosis but what I did do was arrange with my GP that I could go and have an ECG almost on demand so that any event was recorded. Anecdotal evidence suggests that people who rush repeatedly to A and E eventually find the staff there less than supportive and again it depends on how busy they are there and also what facilities are available. A small local hospital for example may well not have the facility to do emergency cardioversion even if a person is anticoagulated, in your case with Xarelto.

    I think it reasonable to be scared since this is all very new to you but as you progress through your AF journey you WILL learn to deal with it. Janco gives some good advice regarding strategies and one of the most important tricks to learn is slow breathing. Try to reduce your breathing to six per minute using your diaphragm not your shoulders. Breath in to the count of seven and out to eleven. Keep you body relaxed and concentrate on your breathing for at least five minutes. This is a relative new exercise which many of us have found useful.

    Read all you can from the main AF Association website where you will find all sorts of booklets and fact sheet to help you understand this mongrel condition.

  • 1. Look at the AF Association web page - link above - read all the literature

    2. If you are able - attend the Patient's Day

    3. If you haven't already, ask to be referred to a an EP - Electrophysiologist.

    4. Keep reading all the posts - there have been many posts regarding 'do I go to A&E' - there is no right or wrong way - do what you believe is ok for you.

    Personally - it was a last resort as I think A&E is for emergencies - life threatening emergencies but as AF often feels life threatening - I went several times to several hospitals in various locations and had no treatment, was just monitored - if that is what you feel you need - that's ok.

    Once I got used to the episodes (yes unfortunately you may have to) and knew more, didn't panic as much and I could do all my own monitoring at home, I felt more comfortable there, so there I stayed - or at least until my husband insisted and rang for ambulance - they were very nice and I ended up in acute cardiac unit for 3 days and still was only monitored, not treated, but it made my husband feel a lot better.

    My GP did give me some parameters though - if your HR exceeds 180 whilst resting for extended time. If your BP falls below 80/40 (my BP always cratered) If you remain in AF for more than 24 hours. If you have syncope or near syncope (fainting), if you have chest pain, if you feel ill and clammy.

    Some good points above

    Oh and welcome, even though you didn't want to be here....

    Best wishes CD

  • Hi Londonant. My personal experience of PAF is after a few hours I call out an ambulance. I was advised to do this by the Paramedic on the ambulance as they can 'catch' the Afib and get a reading which then acts as proof that you have been in Afib which will then be recorded at A & E for future treatment and means you are in the system. After I had been in A & E 4 times, I was admitted and then saw my Cardiologist who prescribed Flecainide and Bisoprolol and follow up ECG's to get my AF under control. In other words, I feel I was seen much quicker by keeping going in to A & E. It's a bit of a pain to have to sit it out but it did help me come to terms with my AF. Hope this helps

  • My suggestions are pretty much the same as other. I reckon there are three high priorities.

    1. I'm not sure how you get to see an EP Cardiologist in Britain but DO IT, insist. The GP is just your first port of call.

    2. Learn as much as you can. Know your options, be proactive and take personal control. Off course with the advice of your EP specialist - its your problem and you need to own it.

    3. You are not alone and finding this site is a bonus, read others posts and use it when you need to.

    Good luck

    robboian

  • Hi there Londonant. Welcome to our world. Lots of good advice. You will find that AF stops feeling so scary when you have dealt successfully with a few episodes.

    Do you know how much flecainide to take? Be aware that it's best taken an hour before food or on an empty stomach.

    I don't go to A & E, partly because I know from experience how to deal with AF and partly because I once got transferred to the Ambulatory Care Unit and I have their phone number and can ring if I ever need advice. I would go however if I had chest pain, or went pale, felt terrible or thought I needed expert attention. You can get a mixed reception, varying from 'Why didn't you come in earlier' to 'You don't really need to be here'.

    A personal pocket ECG gadget like Kardia also known as Alivecor can be handy as you can take a quick ECG and record what you heart has got up to.

  • I can't add much to the above advice, all of which I agree with. Just one thing: I wish that I had asked for my own copy of all tests as my files have got lost between hospitals. My EP reminds me now and again that he's never yet seen an ECG confirming my AF, only a letter from my gp.

  • Ask why he doesn't arrange for one when you have your appointment!!!! Where I go they do an ECG at every appointment even though I am in persistent AF.

  • Sorry, I should have explained that he has never seen an ECG while I'm in AF as I'm on medication and haven't had an episode of AF for years. He needs to see exactly where and when the rogue signals originate, apparently, and as he says, he is prescribing potent pills without any of this information.

  • Maybe I should have twigged that!!!

  • Excellent advice above, especially about referring to an EP

    Keep a diary of medications, consultations and AF episodes. Mine is just a foolscap sheet where I note these things and therefore do not forget. I hand a copy to my EP so that he can see what has happened. He particularly wants to know about frequency and duration of attacks with my b p and rate readings ( I have a cheap blood pressure monitor which my GP checked for accuracy )

    Using flecainide as a pip works for me. 100 strength usually stops the AF within 2 hours.

    Keep reading posts on here as it is a great learning experience. Ask any questions, seek help and guidance. We've all been there and we understand.

  • All good advice. I am in Australia and I go to emergency every time. A lot depends how you are feeling. I go fairly soon as I want to over the attack as quickly as possible.

  • Thank you all for your advice - it's really helpful to hear your experiences and coping mechanisms. I have consulted a private EP and took a copy of the letter he had sent my GP with me to A&E which they found really useful and helped them decide on medication. I think next time I will try the Flecainide and sit it out at home for at least the first three hours.

  • Really good advice from everyone. One thing I would add, is stay in touch with this forum, it is peopled by those who understand exactly what you are going through and just sometimes, the feeling of not being isolated is of huge comfort and benefit.

  • Morning .... Welcome to our Club! The only information I can personally offer you is from my own experience. I too was diagnosed with PAF two years ago and following an appointment with a Cardiologist was prescribed Bisoprolol and Warfarin. He also advised that any 'episode' lasting for more than 40 mins should prompt a visit to A & E. Of course, we are all advised differently so you can't generalise. Anyway, I hope this helps, I'm sure you'll soon adjust to your new regime. Good luck and stay well.

  • If you are a believer, pray. Use this support group to vent and get advice. Wonderful people here differing experiences. If you can get an ablation get it as soon as possible if you don't get better.

  • I have AF but in amongst 3 chronic conditions. It would seem that I inherited the AF from my Dad. I would just like to say that my dad was on old Polish boy who saw th camps of Siberia and action in then Normandy landings right through to Germany. Please bear with me here.

    Although he had AF, he lived to just 6 weeks off of 90 and had colorectal cancer at 85 and he survived a 6 hour operation, to remove his bowel and rectum. He actually had beaten thby cancer. The AF was controlled with perindopril and he also had ferusemide ( spelling) I cannot ever remember him saying he had any chest pains or ever saying anything about his heart rate and I now understand how tough a man he must have been. I had no idea of how serious AF can be

    I just wanted to say that it's not a death sentence and to please try and not allow it to define you. Dad died, very peacefully, in his favourite chair and with a purring cat on his lap. He was asleep and just fell into the arms of Morpheus and left us in this peaceful state. I think that if he was the type to fret, as I do, maybe he would not have lived so long. He loved tending to his garden and walked at least 2 miles each morning, to get newspapers and fresh bread and he loved digging up his mounds of taters and eat his own veg

    I hope this doesn't upset anyone as it is aimed at those that worry as I am prone to do. My own belief is that worry will make us worse than the condition

  • This is one of the most interesting threads I have read on this forum, because it highlights a key issue for people with AF: we get a lot of conflicting advice and we have to be very pro-active in our care. I now live in the US (lived in UK for 16 years) so my specific experience is going to be a little different, but the general is exactly the same -- you have have AF once, you have have it all the time, it can be reflective of other problems in the heart/system, or it can just be 'lone afib', just an odd beat your heart has sometimes. So here are my takeaways after 4 years with this:

    1. If you have AF more than once, consider going on permanent blood thinners. Your stroke risk is significantly elevated after one episode and the more you are in AF, the more likely you are to have a stroke. So it's not the heart so much as the stroke risk -- and even a small stroke can leave you with significant impairment. The older you are, being female, and having other high blood pressure (see the infamous CHADS score etc ... )

    In the US, they routinely prescribe diltiazem or another heart-rate control drug after AF. I think mine worked for years at keeping me out, but who knows?

    GPs are not well informed about this AND this is not their brain at risk. Push for blood thinners. Even if you can't detect big episodes of AF, a small one that goes unnoticed can create a clot.

    2. Doctors here say the longer you are in AF, the higher your risk of damage/stroke. So if you can, get out of it ASAP. That is why unless I were in permanent AF etc. I would always go to A&E and ask for drugs to get me out of it (such as IV diltiazem). The ER staff here told me I should have taken an ambulance; my cardiologist said that taking a taxi was fine :) I think in the UK doctors rely more on 'pill in the pocket' to try to arrest AF but not sure. Of course, if your local hospital is pants, that might change the equation.

    3. Practice stroke awareness (here we have FAST -- side of FACE drooping, unable to raise ARMS together, SPEECH impaired, TELEPHONE for an ambulance. Train your family and work colleagues.

    You know, as I write this (and this is just my thoughts or whatever) wouldn't it be nice to have a one-page sheet that you could give patients, who emerge confused and stressed from the weird, sometimes conflicting advise we get on AF???? Because preventing a stroke really really matters!

    On a more cheerful note, my Mum had AF for decades and really struggled with warfarin (her clotting factor was all over the place, although she really did try). She had multiple strokes, some of which rendered her almost comatose, starting at about 65. And she always recovered (usually to complain about something LOL) and she died at 85, still living independently, still going to the theater, and still happily buying gifts for her grandkids! She still travelled and even came over to Europe from the US a few times. She did have some stroke-based dementia toward the end of her life, but I think she literally had 3 major strokes at which they said she was not going to come back and probably HUNDREDS of TIAs, particularly before her diagnosis (she was one of the very typical people who were found to have AF AFTER a big stroke).

    The glorious thing is that we are all different. The frustrating thing is that we are all different -- we will all experience AF differently and have different effects -- some very little, some catastrophic. As for me, I'm gaming it -- not thrilled at being on blood thinners for life, but I feel like it's the best odds.

  • Dear Londonat, I have had afib (PAF) off and on for 20 years. I have had episodes from one minute to a maximum of 22 hours. Went to the ER twice. In 1996 they sent me home after meds and 5 hours. I was still in afib when I was released. It went back to normal rhythm right after I got home. The second time was in 2004. This time they kept me overnight. I've been told different things. Its been said to me to go to the ER AT 12 hours into afib. Ive also been told 24 hours. I just had an ablation 14 days ago. I went into afib after 8 days for 8 hours. My doctor did an EKG and told me to come back in if it gets to 48 hours! The key is don't panic. It's easier said than done. I always take an extra Rythmol and relax. Sometimes I would stay in normal sinus rhythm for two, three, even six months. But just when I'd almost forget about it, BAM!, back in afib again. One thing I don't even try to do anymore when I'm in it is drive on the fwy. That always makes it worse for me. I don't drink alcohol anymore either. I haven't for over 12 years. That has helped a lot. If you find your meds don't control it as well as you would like, you may want to consider an ablation. But I know that afib SUCKS! People that don't get it just don't understand. I wish you luck, and I will be posting my progress in the future. Sincerely, Deadwoodmike.

  • Thank you for your helpful advice. I will keep my fingers crossed that your ablation is successful - please do keep us all posted on progress.

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