Advice please

[LizCrid]

As an infrequent poster but daily reader, please could I seek your advice, A-fibbers? I seem to have AF (diagnosed) of the vagus nerve variety (self diagnosis). I had an ablation last May which was pretty successful. I have had 3 episodes of AF since then, treated with PIP Sotolol as suggested by hospital. However , I have had 2 further episodes within 3 weeks, the last being early hours of Thursday morning. One Sotolol (40mgs) stopped the rapid heartbeat but I am left with arrhythmia (not too bad) which I had hoped would settle over last night. Would you suggest taking further Sotolol or just go with it a bit longer? Don’t like unnecessary drugs but have a busy weekend planned and don’t enjoy feeling the nervous angst I get with unreliable heartbeat. Any thoughts from you endlessly helpful people would be much appreciated. My thanks in advance, Liz.

[cali111]

We are all different when we respond to the drugs that we are prescribed. For me I could not tolerate most but now on Flecainide and happy. If I were you I would go through NHS 111 and they would get you the advice you need. otherwise go with what you feel is best for you.

Long term consult with whoever did the ablation and they will advise you.

Good luck!!

[LizCrid in reply to cali111]

Thank you for your quick response, cali111. I had not thought of ringing 111. Quite often this forum has good, first hand suggestions but I know it is wise to also refer to medically qualified sources. As an aside, we own a California campervan - your name made me wonder if you were also an owner? Thanks again for your help. Have a good day! Liz

[cali111 in reply to LizCrid]

No campervan but I do utilise all the NHS services that are available to me that is what they are for. Also they would refer you to A&E if they thought it necessary. Try them, you have nothing to lose. I must be honest and say it is difficult for me as I am quite deaf and phone calls are more like Faulty towers but they are very patient.

[LizCrid in reply to cali111]

All good advice! Your difficulty with phone calls made me chuckle. I have had many a hilarious call with my Mum ( no longer here sadly) where I am sure both of us have ended the call more confused than enlightened. Always entertaining!

[Dodie117 in reply to cali111]

Do you wear hearing aids? If yes, you can buy a cord from Amazon that plugs into your mobile phone. This transmits wirelessly to your hearing aids.

It works really well and costs about £20.

Aids on T setting.

[cali111 in reply to Dodie117]

I have a pacemaker and can't use wireless items that close to it.

[Dodie117 in reply to cali111]

Ok. Didn’t know that.

Good luck 🍀

[LizCrid in reply to Dodie117]

Hi Lallym, no I don’t wear hearing aids myself but thanks for your response. It may well help others in that situation. Kind regards, Liz

[jeanjeannie50]

I'd take another Sotalol pill in the hope that it would do the trick and stop your arrhythmia. Or you could always try half a pill.

We are all so different in the way we respond to drugs and the decision really must be yours.

Hope you are soon back in sinus rhythm.

Jean

[LizCrid in reply to jeanjeannie50]

Thank you, jeanjeannie50. Hadn’t thought of half dose. It’s quite a low concentration anyway so not averse to trying this to knock it on the head. Watch this space!

[Kaz747]

I know we can’t give advice on medications. You did well to stop it with 40mg of Sotalol. I started on 80mg/day, then 120mg, then 160mg, then 240mg then 320mg (max dose). I ended up coming off it as in the end it wasn’t doing anything. So personally I wouldn’t be afraid to take more than 40mg but you should always get advice on medications from an expert.

[LizCrid]

Thank you Kaz747. I feel lucky that I seem to react well to very low doses of Sotolol. I gather it’s not a great drug long term but not sure in what way. I am thinking of taking 40 msg, or maybe even 20, to see if I can settle the arrhythmia. My hospital advice on discharge was to take no more than 2x 40mgs an hour apart in the event of a spurious episode so I need to overcome my resistance to taking unnecessary pills - this time it may just be necessary. Thank you for taking the time to reply.

[rosyG in reply to LizCrid]

Hi Liz

Sotolol isn’t used much now. I have vagal af and found it stopped when I had a hot shower on the only time it hadn’t stopped by early morning!! It kicks in when you sleep or relax so if it is vagal AF you could try gentle walking? Flecanide was advised fir me cos beta blockers etc can worsen vagal AF. But your heart needs to be checked before it’s safe to take flecanide. Hope it stops soon.

[LizCrid in reply to rosyG]

Thank you rosyG. I know that vagal af responds to different remedies and I would rather find a non-drug solution. My assumption that I have the vagal variety is that all my episodes have triggered during sleep overnight, but the hospital consultants have never specifically diagnosed this. I will be trying hot showers from now on! Many thanks. Liz

[Kaz747 in reply to LizCrid]

Sotolol can in some people cause Long QT syndrome which is why you should be monitored closely, especially when you first start taking it. Here’s some info on Long QT:

betterhealth.vic.gov.au/hea...

[LizCrid in reply to Kaz747]

Thank you Kaz747. I will do some homework! Liz

[C66t in reply to LizCrid]

Hi Liz, Im on 80mg sotalol 2/24. I was in hospital for the "loading" for 3days all went to plan tg. I wouldbe v v wary of upping dosage as from.what I have read you need to be in hosp. When restarting r invreasing dosage I know not all consultants admit patient for this, which can be based on cost grr. Im in Ireland and tg I have private ins(god help anyone if they dint in this shambles of a health system) best of luck Carole

[LizCrid in reply to C66t]

Thanks for your response, Carole. These drugs can be dangerous without supervision. I have been given advice to take 2 x 40 msg tablets, if necessary, one hour apart but also told not to take more than that unmonitored, so will limit myself to that. Luckily I am on a low dosage which has worked in the past. Kind regards, Liz.

[diannetrussell]

Hi Liz,

How late do you eat your main meal? I find that lying down with a full stomach presses on the vagus, and away we go! So nowadays I eat my main/biggest/highest protein meal lunch time to 3 pm. If I feel peckish later, I can handle an apple, a handful of berries or a carrot etc. Then I can go to bed at my normal hour with a lighter tummy that doesn't press and I don't have to worry about going into AF. You never know, it might help you too.

[LizCrid in reply to diannetrussell]

Hi Dianne, we do eat our main meal early evening, so this is worth changing to an earlier time. What I find difficult is the unpredictability of episodes, as most of the time there is no problem! I would love to be able to pin down the trigger and therefore the solution - but I know I am not alone in that wish! Kind regards, Liz

[diannetrussell in reply to LizCrid]

Yes it can be difficult to discover. I found that checking my awareness of what I'm doing each day as I go, helped me to make the connections. Basic place to look: whatever stimulates the nervous system - TV, coffee, sugar, getting too 'up' in social interactions.... and things that made me kind of 'shut down my heart', not being open and loving with people, letting fear take hold, etc. And yeah, mine was pretty unpredictable at the beginning too, but has settled down over the years. I've stayed on flecainide though. Had my last AF breakthrough in 2017.

[Tapanac]

I found flecainide brilliant for getting me back to normal and it seemed to work from day one. Bit short notice maybe but might be worth asking your GP to change as realise might be hard to get an answer or see your consultant before Easter. All the best

[LizCrid in reply to Tapanac]

Thanks, Tapabac. I think I will request a GP appointment for a medication review, as it is a year since my ablation and I would appreciate a follow up on my progress, which has mostly been fine but there may be room for improvement. Kind regards, Liz

[Hidden]

Hi LizCrid,

You mention onsets in the early hours - do you sleep on your left side I wonder ?

John

[sparkie50 in reply to Hidden]

Hi Carneuny and Liz Crid

Yes, my AF is often set off by sleeping on my left side, which is how I sleep best. It is so nice to see someone else mention this.

I sort mine out by taking an additional beta blocker, which a cardiologist said was not normal practice, but seems to work.

I hope you sort it and feel better by now.

Sheila

[diannetrussell in reply to sparkie50]

I've heard of that too. Nowadays I usually practice going to sleep on my right side, and let myself roll over when it seems like I'm going to be stable that night....

[LizCrid in reply to Hidden]

Hi John, I have heard of this and have tried to train myself to stay on back or right side. However , during the night it may be I roll over as the left side is my preferred position. Ah me, this is a complicated condition! Thanks for your response, Liz

[LizCrid]

Hi Auggeblassen. You are right. I was told I may need a second stab so perhaps I should now begin negotiations to put this in place. I appreciate I am not an urgent case but further improvement would be great and preferably not by taking more or stronger drugs. Thanks for your response. Kind regards, Liz