New to this group.

[Mamble]

Hi I’m in permanent atrial fibrillation and have been since April. 😢

[doodle68]

Hello Mamble 😊 welcome. How are you coping with permanent AF , I guess you progressed from Paroxysmal how has that been...

[Mamble in reply to doodle68]

Hello doodle68

I haven’t been told what type of af I have. To be honest I didn’t know there is different types/names.

I’m tired all the time. 😢

[BobD Volunteer in reply to Mamble]

Paroxyssmal just means it comes and goes. Permanent is just that, however, the medical definition of permanent AF is that both you and your doctors have agreed that no further intervention should be made to return you to normal sinus rhythm (NSR) . What if any treatment have you had so far and have you been put on anticoagulation for ssstroke prevention?

[Mark_tourguide in reply to Mamble]

Hey Mamble,

The single biggest issue for me has been tiredness....! I think it’s part of the deal, but I think it gets easier....anyway this site is a real ‘find’ so take some comfort!

[Mamble in reply to Mark_tourguide]

Hi Mark

I am so tired. Even though I get enough hours of sleep I am still tired. Im reading and joining anything I can at the moment. Thanks

[Mark_tourguide in reply to Mamble]

I know. I get it. There is a part of me which is grateful as I sleep easily at night whereas I used to struggle, and often turned to alcohol to help!

I think it will get easier, but probably never as before.

Your words have helped reassure that it wasn’t just me by the way!🙂

[Padayn01]

So so sorry your going through a terrible time as bobd said are you on anticoagulant?

[Mamble]

The only thing I am taking is bisoprolol. It gets increased every other week. I take 5mg on a night and 10mg on a morning.

[FancyPants54 in reply to Mamble]

My goodness, little wonder you are tired. That's a lot of Bisoprolol.

Hopefully someone more experienced than me can chip in. But I'm in persistent AF (i.e. all the time but not declared permanent yet) and I take just 2.5mg of Bisoprolol and that tires me. Who prescribed that lot for you? Have you seen a cardiologist yet?

[Mamble in reply to FancyPants54]

I’ve not seen a cardiologist but I have spoken to a cardiology nurse who relays between the cardiologist and me. I keep having 48/24 hr heart trace and I have had a scan but that’s it. I didn’t realise there was a difference between permanent and persistent sorry.

[FancyPants54 in reply to Mamble]

With a high heart rate you need to see the cardiologist for the medication. Have you been referred? Can you ask the nurse how to get referred for in-person appointment? If not ask the GP for urgent referral. Push for if.

I have found the system very lax. I'm only just getting to grips with it. Many people on here tell others to speak to an electrophyisist or talk about "their" cardiologist and seem to have access to Afib nurses. I have none of that. But at least I have seen a cardiologist, not that he's any use.

That much Bisoprolol will be lowering your blood pressure a lot. That will make you feel ill. Please pick up the phone on Monday and start being assertive for yourself. I've lost all faith in doctors over the years. We have to ask for what we want and keep pushing.

[Mamble in reply to FancyPants54]

I will have to shout up for myself. But there is so much to get my head around. Thanks for the advice.

[WhitstableWanderer]

Hi Mamble, welcome to this useful and supportive forum. Read every day and you'll soon be knowledgeable about AF. If you are in permanent, you may well be one of the more fortunate AF sufferers, in that you don't have unpleasant 'attacks' from time to time and many of us don't really have any regular symptoms. However, the various meds that you are likely to be prescribed DO have effects.. Bisoprolol is a powerful beta blocker, and 15 mg per day is right at the top end. Some folk will be on 1.25 or 2.5 a day. I've been on 10 mg daily for two years or so and found that it really knocked me back. So, whilst no-one here will tell you what meds to take or not take, do discuss with your cardiologist (not GP) when you get the chance, as it's likely the Bisop will be at least partially responsible for your tiredness. And, as others have already advised, ask about anticoagulation as AF increases your risk of stroke. Good luck, and don't panic, AF patients can live long and relatively normal lives.

[Octaviascout]

I’ve been in PAF for 15 months now since diagnosis ... probably longer than this? I was on 10mg of Bisoprolol for 6 months which tired me out. This was changed to Verapamil 8 months ago which so far I’ve coped with. Also on anticoagulants .. normally only given if you’re over 65.

[FancyPants54 in reply to Octaviascout]

It's not normal to only give anticoagulants to the over 65 in the UK. If you have AF you should be on one of those regardless of age.

[Octaviascout in reply to FancyPants54]

If you are younger than 65 a CHA2DS2 score of 0 would indicate a low risk of stroke. I was 65 when I was diagnosed so a CHA2DS2 score of 1 placed me at a low to moderate risk. So anticoagulants were prescribed, I’ve been taking them for 15 months now.

[Rubymurray25]

I simply couldn't agree more with the post from Peteratsyvan with asking a Cardiologist as they deal with in hundreds of times a week, I really do like my doctor but feel it is unfair to ask something they don't really understand!

[Golfer60UK]

Hello, welcome to the club, lol have been in AF for 18 months and waiting for my second ablation. Bisoprolol and Apixaban keeping control, heartbeat around 80/95 per min.

Still playing golf 3 times per week, weather permitting, but am very tired at the end

[GrannyE in reply to Golfer60UK]

I too play 3 times a week, weather etc permitting but as our course is hilly I have to use a buggy. There is no doubt about it after my golf I am not good for anything else for hours and hours. Golf for me is a life saver. In my opinion it is all a question of quality of life as to when to have the second ablation. That is subjective. Long may you continue to play.

[Golfer60UK in reply to GrannyE]

Hi, I agree re golf it is a real privilege to be able to play, maybe not as well as I used to, but hey ho that's the way it is.

Where do you play?

Dave

[cuore]

If you are in constant AF without interruption, you are in persistent AF and for 4 or 5 months. In that case, the rogue signals have gone beyond the pulmonary veins to other parts of the atria. It seems that only your GP is treating you. Demand to see an electrophysiologist, and not just a cardiologist before your condition worsen too much. AF begets AF. The more AF you have, the more you will get.

[Caro57]

Hi Mamble - that sounds like hard work! Hubby was in permanent AF - from the get go - and, after ablations and medication, is now pacemaker dependent so although the upper heart chambers still fibrillate he feels vastly better. Perhaps you need to seek some further guidance and information

[District]

Hi Mamble, I'm in permanant AF, after various tests where my average heart rate is 80 the Cardiologist has suggssted I stay on Apixaban but no other action or medication to be taken. It makes me a little breathless and I certainly sleep well but I don't think I would want any other intervention as being asymptomatic I don't feel any different to being in NSR. Perhaps I'm a lucky one.

Bill

[CCW66]

Does permanent afib mean you are in afib 24/7...or that you just have afib most of the time?

[Mamble in reply to CCW66]

I’m in AFib all the time.

[swansong75]

Hi Mamble, I'm in the same boat as you. I'm on 2.5 mg bisop and heart rate is in the low 50s. Anticoagulant helps allay the stress and fear of a stroke so I would check this out with a cardiologist. As others have said, this group is a massive help with info and opinions.

[Mamble in reply to swansong75]

I was given blood thinners in hospital but my GP stopped them saying my risk Score wasn’t great enough

[swansong75 in reply to Mamble]

What was your score?

[Mamble in reply to swansong75]

One. For being female.

[swansong75 in reply to Mamble]

I'm no expert but I believe a score of 1 means the risk of stroke outweighs the risk of a bleed. My score was 1 due to high BP which is under control

[doodle68 in reply to Mamble]

Hi Mamble 😊 the 1 point for being a female is only applicable if you have other contributing factors for example your age or any other comorbidity .

So a 65 year old female scores 2 points one for age one for gender a 55 year old female with no other comorbidity scores none

See below..

''Gender and the Caveat to CHA2DS2-VASc

In general, a CHA2DS2-VASc score of 1 should warrant strong consideration for full oral anticoagulation.2 The one exception, however, is in patients who have a score of 1 due to gender alone. In these patients (female < 65 years old without other risk factors), antithrombotic therapy should not be given. This special situation may not be intuitive with the CHA2DS2-VASc scoring system.''

clincalc.com/Cardiology/Str...

[CCW66]

I hear that this is actually better than paroxysmal...is your rate constant ? Debating a second ablation for a lot of paroxysmal or just leaving it alone.

[Mamble in reply to CCW66]

I keep having 24hr/48hr heart monitoring and it says I’m constantly in AFib with an average heart rate of 103. All my cardiologist does is increase the bisoprolol.

[Buffafly in reply to Mamble]

😠 Definitely demand to see an EP especially as you are under 65 💜