Newly diagnosed with PAF. very frightened. Doctor changing med from Bisoprolol to Sotalol. Advice please!

[blackcat123]

I have episodes of PAF for a couple of years but didn't know what it was and as was so seldom I never went to the doctor. However in the last few months it got much more frequent and in the last few weeks since diagnosis it's happening every couple of days. I have an appt. with cardiologist on 17th June. At the moment I am just on 75mg aspirin and was on very low dose of Bisoprolol but doctor says I'm not even tolerating that and wants me to try Sotalol. Trouble is I have read that you should be in hospital and near heart resuscitating equipment when you start it as it can cause unwanted heart arrhythmias which can be fatal!!!! Has anyone just started this medication at home and how have you found it? Sorry this is so long but very scared about everything. Feel my life is over.

[meadfoot]

Hi Blackcat. Sorry you are feeling so low. BUT your life is not over - far from it. Once you are stabilized with help from your cardiologist you will get your confidence back. I would speak with your doc if you have read that it needs starting in a hospital setting. I am sure they will help put your mind at rest.

Some drugs like Flecainide which I take needs to be started in a hospital setting for monitoring, sounds worse than it is. I am sure many people on this site take Sotaolol and will be able to advise you.

Be calm you will get back on track.

Dee.

[Rellim296]

The first and last parts of what you say are very familiar Blackcat! I think many of us have started gradually and AF has developed into a very unwelcome intrusion into one's life and sense of well being.

I can't help with the Sotalol, but the feeling that life is over is something I am attempting to deal with. I feel I have aged considerably in a short space of time, dependant upon drugs I don't want to take. We have retired and our children have left home and thus it is as if, in life's meal, the main course is over. I am ready for the sweet trolley to come along - but cheese and biscuits have been served. I know life isn't over and there could well be much to enjoy ahead. But convincing oneself life isn't blighted is a hurdle.

Lots of support is available here from people who know and understand and I for one am seeing things more clearly and am grateful for all the wise words.

[rosyG]

Hi- others will give you much more experienced advice shortly but you must ask for proper anti-coagulants ASAP if you are having AF every couple of days. Asprin is not sufficient!

I think also, if it's your GP prescribing, you might want to wait for the Cardiologist to decide which other medications you need (don't wait for anti-coagulation, that is something your GP should organise straight away)

NICE guidance is changing ides about some medication and cardiologists will be the one's to advise re this.

You could also ask your GP to get a more urgent appointment with the cardiologist as you could start medication sooner then

Hope you feel better soon,

best wishes,

Rosemary

[Dodie117]

Your life is not over and once things settle you will manage your AF not the other way round. Most people on here felt just like you but the first few weeks after diagnosis are the worst. Make sure the cardiologist you see is an EP who is expert in the electrics of the heart. Ask about ablation as many EPs are now doing this soon after diagnosis as they now think there is a better success rate when done at an early stage. I had it done 6 months ago and my AF has gone. It may come back but if it does I will have it done again.

So there is hope and light at the end of the tunnel.

Sorry can't advise you on the sotalol.

As Rosyg said your first priority should be anticoagulation. Go back to gp and ask for this now.

Good luck in your journey and please try to stay positive as it really does get easier.

[CDreamer]

What you have read about Sotalol has some validity, according to a top EP who facilitated a group at last years AFA patient's day. If I were in your shoes I wouldn't take it until I had been seen and monitored by a cardiologist EP. Having said that there are others on this site who take it and find it helpful. I gather it is it both an anti rate and rythm control drug. The problem is that Sotolol can affect the ventricles as well as the atria whereas other beta blockers work to slow the atria, not the ventricles of the heart.

I agree with the other posts, it is natural to be very scared at the diagnosis, we have all been there, and we also live full and interesting lives with this condition and there are therapies that will help ease or even stop episodes, from drugs to PVI ablations.

The biggest risk is that of stroke, which I hope your GP has talked over with you and done a risk assessment? There is a link on the AFA website where you can do your own, CHADS or the updated version, however, AF specialists believe that you need to add 1point for just having AF. If not go back and have that conversation because the others are correct, most people here will be anticoagulated for protection against stroke and aspirin is an anti platelet, useful after heart attack or stroke, but up to date medical information says AF = prescribe anticoagulant. Ask your GP to check the latest NICE guidelines.

Keep calm and carryon is a good slogan for AF, frightening though it is at first, it is not immediately life threatening, although the symptoms can leave you feeling that it is life limiting. Best wishes and let us know how you progress.

[CDreamer]

PS. Do check out the FAQs at the side of the news feed, loads of info for newbies.

[Gmc54]

I have taken sotolol since 2009, I was prescribed it in the hospital after an 18 hour episode of afib, I was monitored continually over a couple of days. At first I felt very tired on this tablet, but over time my body adjusted, and now it is not a problem to me. Please take the advice of others here and get on Warfarin asap, and also push for an earlier appointment with a cardiologist. Some doctors still think aspirin is ok for afib, but it most definitely isn't. Stroke is the thing to be concerned with when you have afib, and warfarin is a preventative. At first afib is frightening, but you will learn to live with it, and follow a normal life.

[blackcat123]

Thank you all for the advice. It's so nice to speak to people who understand how I feel. No one I know really knows anything about AF or understands how this diagnosis has affected my life. I have an appt. with my doctor on Tuesday so will discuss all you have suggested.

Thank you all again. I'm sure this wont be my last post! So glad I found this site.

[lingooz in reply to blackcat123]

Hi , I can so relate to you as I have only had PAF for 2 months ,I was so anxious that I am on antidepressants !! (Feel much better now ) I have only had one minor attack since and one metoprolol saw it off and been on aspirin , but starting warfarin next week ( which I dread ) but am getting on with life now, and you will too, very best wishes , Lynn

[shadski]

HI I have been on both Bisoprolol and Sotalol. I had a much hared time on Bisoprol. It made me feel always tired and my legs felt like they weigh a ton. Just doing normal things like housework made me tired. I took it both before and after my electroconversion so I knew it was the meds not the AF. When I switched to Sotalol my energy changed immediately. My Dr. said if there were going to be problems with Sotalol it will occur when you are first on them or when the dose is increased. He had me come in for an EKG twice a week for 3 weeks to check for problems. He said the Bisoprplol will lower your heart rate better than Solotol but Sotalol will help keep you from going into AF a s well as lowering heart rate.

[Sunshine89 in reply to shadski]

Dear blackcat123 Just 2 days ago (Oct18/2017) my doctor changed me from Bisoprolol .25mg to Sotalol 80mg and, after I got home and read the leaflet attached to Sotalol my reaction was exactly the same as yours. So, decided to do a little online research and somehow finished up back here to this site viewing your piece on it. Like you, I am starting this medication at home and the doctor has given me a note to go for an ECG exactly 1 week after starting. Meanwhile, like you, I am feeling anxious (an understatement). The first thing I did was to go online and check the credentials of the "specialist" who prescribed and finding that he is well respected and considered an expert in arrhythmias certainly helped. Just reading Shadski's contribution here saying that his doctor told him/her that if there was going to be adverse reactions to this drug it is usually at the beginning and I have had no adverse effects yet makes me a little calmer as each day passes. Thank you Shadski!! I then decided that panicking could worsen any effects so I am trying to keep calm by meditating which for me means sitting calmly with my eyes closed and putting my mind into "happy memories" mode. Like you, I get to wondering "is this it?" and if I can't calm myself down by meditation or other means at those moments I come into this site and the fact that I see many others have been through similar, and often much worse, continue to hang in and survive quite well helps me tremendously. I shall be checking back and looking for your name in here again and hopefully we shall both be in here telling that we are doing well on Sotalol. Best wishes to you...

Just for the record I live in Niagara Region of Ontario Canada and I am 76.

[Sunshine89 in reply to shadski]

Dear Shadski: Thank you for sharing this. My doctor just changed me from Bisoprolol to Sotalol and I was feeling panic after reading that one should be hospitalized to make this change and your comment that your doctor said that if there were going to be problems with Sotalol it will occur when you are first on it helped me feel calmer. My doctor recommended an ECG 1 week after beginning and 1 week can seem an awful longtime when one is scared, so again, Thank you!!

[Japaholic]

I started it in hospital after failing on 2 other medications. I still have AF but Sotalol has it under control, it's more manageable and a lot less severe I am VERY grateful for this.

In addition, watch your diet, caffiene intake, your alcohol intake and keep exercising. All help control and manage your AF.

I've learned a lot on this forum, when I arrived here I was in hospital and afraid I was about to die.

I'm still alive, I emigrated 3 days after getting out of hospital and now have a new life, a new job and a new cardiologist I can see whenever I want.

Don't give up, keep your chip up and take control of your condition. You can't cure it but there are a lot of things you can do to help manage it.

[Beta44]

First post, but I hope that it is useful. I have had PAF for about twenty years, and although the frequency has increased over the years I have always managed to keep persistent AF at bay with drugs. I take Flecainide and Sotalol, which were NOT commenced in a hospital setting, and I had no trouble at all. I understand that the likelihood of problems is very slight, and the hospital setting is really an American idea (possibly to maximise the cost to patient). I switched from Bisoprolol to Sotalol about two months ago, and it has greatly reduced the frequency of attacks. Although I am very symptomatic when in AF, I do not think that it has dramatically affected my life, and I am told that an ablation is still perfectly likely to be successful, when needed, provided that I am not in persistent AF, as and when it happens, for too long.

[CDreamer in reply to Beta44]

I am really pleases that it worked for you but the advice from the EP at patients day was to start it, and some of the other drugs, 'under medical supervision'. I started Flecainide in my local medical centre,under the supervision of my GP.

[Sunshine89 in reply to Beta44]

Thank you Beta44 for sharing your experience re: Sotalol. Like blackcat123 I was worried about transferring to this medication while not being in a hospital setting as well as wondering how others' reactions have been. Wishing you well...

[dedeottie]

Hi. That is a helpful post especially for those just diagnosed as it can be very worrying. There are lots of people who have simply found a way of controlling the beast! I have found it helpful to accept that you just have to keep evolving with the A.F. when one thing doesn't work you just try another. Having an E.P. and G.P. that I trust has helped tremendously as I feel that someone else other than me is in control. X

[Beta44]

I was concerned myself, but cardiologist and GP both said that supervision would not be necessary. Possibly because I do not have any other issues. As it turned out they were right. In the end you have to trust the advice!

[CDreamer in reply to Beta44]

Indeed you do, and when you come across differing views in the end you have to go with your own insights and gut reaction. I very pleased it worked for you.

[Hidden]

I have ben on sotalol for 18 years and far from feeling your life is over this will make your life worth living

[Sunshine89 in reply to Hidden]

Thank you cummisa, what you shared here gives me hope.

[Hidden]

Hi Blackcat!

I'm a newbie here (joined Friday last week) and have just read your question. Without going into my long and boring history, my GP put me onto Sotalol (40mg twice a day) in March 2012. He made no mention of the need to commence this drug whilst being under hospital surveillance, neither did he suggest I be monitored at the surgery. As far I can recall. I just got the tablets from the pharmacy and started - and I'm happy to report that I have experienced no problems whatsoever with the drug; indeed I found an almost immediate improvement in my symptoms.

I know how scary these symptoms can be. On a tangent, in autumn 2011 I developed ulcerative colitis and then a few weeks later, a serious dvt in my right thigh which left me with post thrombotic syndrome. Reading up about u/c left me initially in utter despair - and like you felt that my life had all but come to an end, but here I am nearly three years later and things are nowhere as bad as I feared they might be. Your life is most certainly not over, although I honestly do understand why you may feel like that. I am sure you will find that with the support of your family, friends, doctors and the folks on this forum - and a little time - you'll get your confidence back and discover that life really is worth living again!

With thoughts and my very best wishes to you.

Pete