Conversation with GP about permanent Afib

I was diagnosed with paroxysmal Afib about 2 months ago and after taking Sotalol was free-so far as I could tell-from episodes. However, earlier on during the week I woke up with Afib- a bit of a blow as I hoped the meds would prevent recurrence. When I spoke to my GP this morning he said that mine might go on to become permanent. This, he said, was no more dangerous that paroxysmal Afib. But my concern is that I would be permanently aware of the condition and unable to relax or forget about it. Is that the case, or am I just worrying unnecessarily?

[BobD Volunteer]

AF is generally a progressive condition so yes the more you have it the more you will have it.

I an guessing that you are not in UK as sotalol is seldom used here, it not being approved by NICE for AF and only occasionally prescribed by electrophysiologists (EP). From your comments it might appear that you are only being treated by your general practitioner and to be honest few seem to have much idea about AF unless they have a special interest in such matters.

Nobody can tell you if or even when your AF may progress or even if it will. Properly treated there is little if any impact on life expectancy. Regrading the symptoms it must be pointed out that many people with permanent AF are far less aware, if they are at all, of their condition. In fact many people with permanent AF only find out they have it either when they have a stroke or it is found during routine check-ups. It seems to be the change from AF to NSR and back which is most distressing to many and that the body does adapt to a constant condition quite easily.

In conclusion I would suggest that you get to see a proper expert like an EP and see what can be done for you. Remember that all and any treatment for AF is only ever about quality of life (QOL).

[Hidden in reply to BobD]

Thanks for your reply. I am in the U.K.- several people have, like you, expressed surprise that I have been put on Sotalol (including a doctor in A&E). I wondered whether the sensation of having permanent Afib was unpleasant to the point that it made it difficult to relax.

[Edm174 in reply to Hidden]

Hi I’m in the uk and on sotalol and been ok 👍

[dmjtanner in reply to Edm174]

I am in the US and doing ok on Sotalol also.

[Edm174 in reply to dmjtanner]

Hi I don’t feel as tired on sotalol as I did on bisoprosol???

[dmjtanner in reply to Edm174]

I'm on a low dose of sotalol, 40mg twice a day...it's pretty good. I never know if it's my age or the sotalol when I feel tired. Probably a little of both. I was never on the bisoprolol so I can't compare it. When I feel very tired and check my blood pressure, it is usually pretty low...so wonder if that's it.

[Edm174 in reply to dmjtanner]

Hi yes my blood pressure drops too ??? Have a nice weekend 😄

[Jamila123]

Hi

Do not be disheartened 🌸

Cardiologist are still unaware of what causes Afib

Therefore it’s not possible to say to u by GP that Afib will become permanent .

There are very much in the dark

If no Cardiac issues

Then go back to look at life style

I was diagnosed afib 3 years ago

Did not take medications just changed lifestyle

And took lots of vitamins that I researched

In the beginning I was getting afib 4 times a month

Now I can’t remember when I last had an episode maybe 5 months ago and very mild lasted 30 minutes

My point is if afib can get better and who knows with the right tools for the body to heal could stop altogether 🌸

Look at your gut as well

[Vonnieruth in reply to Jamila123]

Hi can I ask what life changes you made please

[Jamila123 in reply to Vonnieruth]

Hi

I am an all or nothing person so it was not too hard to change

First I bought a diary for health journal

Stopped straight away all caffeine not even decaf as they use chemicals

No alcohol at all

Stopped

Cheese all the triggers

Was OCD with foods for ages

Stopped all chocolate crisps cakes basically most processed stuff

In place I had tea herbal drinks hawthorn tilia

Fresh lemon juice juicing ginger turmeric

Lots of water

Mindfulness and yoga in morning

Changed job from

Nights shifts to a day job

Stopped all dairy

Then realised had gut issues

So had probiotics

Decided to leave any negative people behind

AIM was to decrease inflammation that had built up in my body and detox body

Plenty of nuts fresh organic fruits

June 🌸

[CDreamer in reply to Jamila123]

Well done! I agree 100% - only way to go. I would also add - dump all trans fats, especially veg oils & spreads but increase fat consumption overall - avacados, some nuts, coconut oil, some olive oil but never cook with it & cut out ALL gluten products & increase green veg intake to 7-10 portions a day - not nearly as difficult as you think.

[Jo-hannah in reply to CDreamer]

Hello CDreamer, I use olive oil and cook with it, is it not good to cook with it? I am having break through Afib for past month and trying to figure out what might have brought it on, thanks in advance

[CDreamer in reply to Jo-hannah]

Hi my understanding is that it is OK at lower temperatures but other fats such as coconut oil, butter and lard tolerate high temperatures much better so I use Olive oil as a dressing but mostly butter or coconut oil for cooking.

Virgin olive oil is excellent but make sure it is olive oil and cold pressed as many manufacturers will blend with other oils. Hemp oil is also good.

I doubt whether oils or fats will tigger AF but eating smaller meals and resting after eating will certainly help.

Best wishes CD

[annemk in reply to Jamila123]

valuable information. I have made many of the same lifestyle changes.

[Cat04]

Samazeuilh - no worries with Sotalol here in UK as NHS particularly recommend sotalol for restoring heart rhythm - link here

nhs.uk/conditions/atrial-fi...

and NICE recommend it for prophylaxis of AF

bnf.nice.org.uk/drug/sotalo...

Following my ablation my EP has said to carry Sotalol as PIP (pill in pocket) to take in case my AF returns during the recovery period, as it is known to work.

We are all warned that PAF can develop into persistent AF (more than 7 days) or permanent AF which increases our worry/anxiety which in turn can increase the AF 😕 Cannot comment on permanent AF but my mother had it for some time without knowing/commenting on it so fingers crossed for everyone! It's the noticing of all these arrhythmias that is so disconcerting, distracting and difficult to deal with.

My GP (and maybe more of them should) recognises that she is not a cardiologist/EP and fortunately doesn't try to interfere with their decisions or tinker with their prescriptions.

Do you have an appt due with EP or contact your arrhythmia nurse, maybe your sotalol dose needs to be increased if you are still getting breakthrough AF ?

[Hidden in reply to Cat04]

Thanks to you and all the others for your replies. I have been referred at my request to an EP but haven’t been told when the appointment will be yet.

[Cat04 in reply to Hidden]

I had a 9 month wait (South West Cardiothoracic Centre, Plymouth) for a 16 week follow up appt as they are so busy. I just told myself that I wasn't that bad or they would have prioritised me. Now waiting for pulmonary vein isolation/ganglionic plexi ablation under GA.

[CDreamer in reply to Cat04]

I have to disagree, Sotolol was removed from NICE recommendations for lone AF - for a good reason. Glad it works for some but I refused it as a treatment option having spoken to a leading specialist at the Patients Day in 2014.

[momist]

You have found the right place to learn all about your AF. I can't recommend this forum enough, they are all helpful and friendly people here. Yes, the worry and anxiety of AF makes the feelings worse, and does contribute to the high heart rates you might experience.

The best solution for me was to read as much as I can about it, both here in the forum and also by watching Dr Sanjay Gupta's videos on YouTube (York Cardiology). I'm now quite relaxed about it when I go into AF, and have so far managed to just go to bed and wake up in the night when I go back into sinus rhythm. I also carry a Kardia device on my mobile phone, so I can record the events as needed.

Have you been advised abut the danger of stroke, and are you on an anticoagulant?

[Hidden]

Thanks for your reply. I was initially put into an anticoagulant. (Dabigatran) and after 24 hours later got a subconjunctival haemorrhage (the white part of the eye becomes bloodshot and it looks horrible, although it isn’t considered to be serious). After discussion with the doctor it was agreed that I could defer going onto an anticoagulant until I am 65.

[NooNoo14]

My EP told me that I would be better off if I went into percent AF as I wouldn't get the severe swings in symptoms. Still in PAF but having AF every 10 - 14 days which is not good so hope what he says is right.

Netty

[Jill13 in reply to NooNoo14]

That is true for me. After PAF and many horrible episodes and feelings of doom and gloom and unsuccessful cardio version I am now in Permanent AF rate controlled by medication( not Sotalol) and don’t feel palpitations or breathlessness at all

I live in Australia and see my Cardiologist once a year and my GP keeps in touch with him if I have issues in between so feel fortunate

[doodle68]

My brother is considerably older than myself (82) and has permanent AF.

He was diagnosed 2 years before I was diagnosed of P-AF .

He takes warfarin and bisoprolol and has no symptoms at all.

My brother was horrified when I explained to him about my long highly symptomatic episodes of P-AF not that I want to join him, I am coping just fine now

[beardy_chris]

I can't speak for anyone else but my AF is relatively symptom-free. When I had a cardioversion, I was in NSR for a couple of weeks but then I reverted at some point and I didn't really notice the difference. I'm now in permanent AF but it still doesn't really bother me. I don't know whether, if you are symptomatic, it gets any easier; though, for me, at least, I know what is going on and I don't get the ups and downs of being in paroxysmal AF.