First time persistent AF - what should I expect?

[Marjolaine]

I was hospitalised at the beginning of the month and am now on meds (bisoprolol, digoxin and Xarelto). My resting HR is about 90 but races when I do the most mundane of things. My BP is really low (89 75 the last time I had it done) I frequently feel dizzy when I get up or do anything and I am really tired most of the time.

The thing is, nobody has really told me what to expect. My ultrasound came back normal so the arteries and the valves are all okay - it is just the electrics that have gone bonkers. I am 47 (which is apparently young).

My appointment with the EP in Oxford is on 26 July.

[10gingercats]

Hello Marjolaine.I cannot answer your questions but I would be interested in knowing who your EP is in Oxford.

[Marjolaine in reply to 10gingercats]

I am going to be seeing Dr Kim Rajappan (usually based in the JR)

[10gingercats in reply to Marjolaine]

Thank you.I would be glad to know what your impression is of him.

[davebakerpurton in reply to 10gingercats]

That's who I was nominally under, in the 8 appointments I had over 2 years I never saw the same doctor twice, and had different advice from each one of them.

[10gingercats in reply to davebakerpurton]

This is where private health care helps Dave Baker. If you saw 8 doctors in 2 years I guess you were with the NHS and,yes, you can see a different doctor every time you attend the clinic ..Marjolaine who started this post saw him ,Kim Raj.... privately. so he gave her time....and as she described 'a bedside manner'.

[Marjolaine in reply to 10gingercats]

I also found out from a friend who works in cardiology for the NHS that cardioversions here are done with sedation and not GA. As for Dr Rajappan, I am pretty certain he is as charming to his NHS patients. I concur though, that I am very lucky.

[10gingercats in reply to 10gingercats]

Now I understand!This is Kim Rajappans 'clinic'.So you prob. get to see him once then whoever is on duty on that day. This is ,oh, so familiar in the nhs. You only get continuity if you pay for it as a private patient.Thanks David baker......I realised when I looked up Kim R. and saw he was part of the cardiologists 'team'.

[Marjolaine in reply to 10gingercats]

Hi, Dr Rajappan is excellent. His beside manner is wonderful; I was very nervous for my first cardioversion and he made me feel far less disconcerted. He took the time to talk to me and explain what he was going to do.

[Hidden]

Well Marjolaine, although it's not difficult to understand your concerns, it sounds as if you are travelling along the right path and the ultrasound sounds positive too. It's great that you are seeing an EP and I think its important that you take a detailed account of your AF history so that you do not forget to tell him anything that will help his assessment of your condition. If you haven't already, I also suggest you read up on as much info as possible about AF and treatment options which are featured within the AFA webpages. This will all help you make some informed decisions about what is likely to be the best treatment for you.....best of luck for the 26th and please let us know how you get on.......John

[Marjolaine in reply to Hidden]

Thank you John. I take it exhaustion and dizziness are normal at this stage.

[JackyMac in reply to Marjolaine]

My symptoms are the same, an EP hasn't been mentioned yet. Please keep us informed as to how you get on on 26th. Thanks for sharing.

[Marjolaine in reply to Hidden]

Thank you so much for your reply. My cardioversion returned me to sinus rhythm for all of 20 minutes! I was taken off the DIgoxin and am now on amiodarone (which can have lots of unpleasant side-effects) and after a week I have gone into sinus again and feel relatively normal (although I still cannot sleep on my left side and my chest feels tight when I have taken the tablets).

[Hidden]

Exhaustion and dizziness can be caused by the AF, but it can also be a side effect of the medication. Not too helpful I know, but it will help the EP if you can remember if you had the symptoms prior to taking the medication. Many here on the forum say that bisoprolol causes tiredness and shortness of breath but a lot depends on the dose. I am not medically trained, but bisoprolol (like any betablocker) will reduce your blood pressure which you say is low anyway so this should be discussed on the 26th.....

Your EP should be able to get you on the right track......

[Clareowenpearcy in reply to Hidden]

I was on bisoprolol for just 9 weeks before my last ablation. It really did not agree with me & it was truly the worse time. Extremely tired, lethargic & depression. I didn't want to do anything or go anywhere. As soon as I took myself off of it I felt so much better. I told my EP the day of my surgery and he was not surprised! He says it can definitely have this effect on some individuals.3weeks today since surgery, I'm feeling great and I only take Xeralto now.

[millie-becca-187]

I may have written your post because you sound identical to me (except I'm 49).

I struggled like this for about 2 years, working full-time as well.

Today 5 weeks after my 2nd ablation I feel great. All the symptoms gone, except I still get breathless and a bit dizzy if I push myself too hard, but it's still early days for that post ablation.

The feeling of being 'normal' is amazing. No dodgy heartbeats, not feeling like you're going to collapse at any minute etc, etc, etc is the best feeling ever.

So there is hope that AF improves, you just need to find the right treatment for you.

[Marjolaine in reply to millie-becca-187]

Thank you so much. What a lovely reply

[Marjolaine in reply to millie-becca-187]

I think I would rather have an ablation than years of meds. Are you on any meds at the moment?

[millie-becca-187 in reply to Marjolaine]

I'm still taking 10mg bisoprolol, 20mg rivaroxaban and 40mg atervastatin. I also now take20mg daily of omeprazole as since my ablation I've developed problems with my digestive system. Apparently this can sometimes be expected. Hopefully when I have my check-up the EP might reduce my meds.

[Hidden]

I was 47 when diagnosed with AF two years ago. It's really not helpful when Doctors and Nurses keep telling you that you are very young to have AF. Really makes you feel better about it all doesn't it? 🙄

I struggled for 2 years with regular hospital visits for cardioversion (3 being zapped, 3 being pumped full of chemicals and countless others that spontaneously reverted )

Bisoprolol can make you feel exhausted and breathless as can lots of the other drugs you are on. Xarelto made me feel absolutely dreadful . But then again, just being in AF can make you feel dreadful, tired and breathless.

As has been said before, read everything you can, and if you are offered or can push for an ablation then go for it

[Marjolaine in reply to Hidden]

I think that is the way we are going. I am lucky enough to have private health care. My first cardioversion did not work but Dr Rajappan took my off DIgoxin and replaced it with AMiodarone and I appear to have returned to SR after a week!

[Marjolaine in reply to Hidden]

I agree Mike. Sometimes it is difficult to know whether the symptoms are coming from the drugs or the AF.

I was in normal SR for about 48hrs on amiodarone but seem to have reverted and am not feeling great. I got the impression my EP thought ablation was the most sensible.

[Marjolaine in reply to Hidden]

Have you had an ablation? I was in SR for about 2 days, but back to AF. I am exhausted walking if it isn't completely flat. I am a bit worried that I will not be able to work and have AF (I am a teacher)

[Hidden in reply to Marjolaine]

Hi, yes I had an ablation 4 months ago.

Still on bisoprolol which is making me lethargic and slowing me down somewhat but I have been walking about 3 miles a day to the beach and back with a surfboard and getting in a couple of hours in the waves daily.

My wife is a teacher and I know how hard that is. I hope you manage ok when term starts

[jondeanp]

I was 44 when i was diagnosed with AF. I think i have seen posts from people in their 20's.

Keep an eye on the information here and on the heartrhythmalliance.org/afa... to keep yourself as informed as possible

[Marjolaine]

I spoke too soon. My HR has slowed but I am skipping beats and don't feel totally normal. Will contact my EP to ask what to do next as he told me to stop the bisoprolol straight away.

[Jgg2214 in reply to Marjolaine]

I had open heart surgery in 1986 for an "ablation of atrial tachycardia". I was the 8th person to have this done and was lucky enough to have it done by the physician that developed the procedure, Gerald Laurie, MD in Houston. I was patient 8 in the medical journals. I was 22 years old at that time. Back then I was told if I ever had a heart rhythm issue again I'd my only option would be a pacemaker.

31 years of not one issue with my heart and then boom, this February I had a horrible attack of afib and a reentry tachycardia stemming from my original surgery. My heart rate was almost 200 and my bp wouldn't register for the first 30 minutes. I drove myself to an emergency room and was transported via ambulance to the ER at a local hospital. It was terrifying. I didn't think I'd ever have to deal with it again. Initially I was put on Metropolol and Xarelto, but the episodes continued with more frequency. About 7 weeks in my amazing EP at home in Lubbock convinced me to do an ablation. It wasn't a pleasant experience but so far, (I'm 6 weeks post op), I've had no major episodes, just a few minutes of tachycardia a couple of times. I'm still having palpitations and some PACs and PVCs. After the procedure my bp shot up and they had difficulty getting it under control, but eventually did. Now it has gone back up and we are struggling to keep it down. It has been under control for 20 years. Has anyone else had bp issues post ablation? I'm still on Amiodorone, the Metropolol, which he's increased along with lowsartan and the Xarelto. The hope is that he can get me off of the Amiodorone soon. He said he will not keep me on it long term because the risks are too great.

I'm concerned I'll have to have another ablation because he was not able to address the electrical impulses coming from my right atrium. He said the scar tissue from my open heart was extensive. In the surgery they removed 3/4 of my right atrium and patched it. The hope is that the ablation got the afib portion of my problems and that it will greatly missed no muse my episodes. Has anyone else had an ablation after having open heart surgery for ablation of tachycardia?

[Jgg2214 in reply to Jgg2214]

"Greatly reduce my episodes"