Stay on current meds or switch to Sotalol?

[Kingfisher44]

Following my second ablation I have been told that my PAF has non pulmonary triggers. Whilst they seem happy to try a third ablation where I think they will isolate different part of the atrium and then chase trigger points there seems little confidence that this will be successful. I am also not overly keen on this option having suffered a cardiac tamponade in the last procedure.

I am currently taking Diltiazem (160mgs) and Flecainide (100mgs twice a day). Whilst this is just about working - I get the occasional AF breakthrough but they are shorter and slower. I am also experiencing pre AF episodes and most days I get periods where my heart is very unsettled - briefly going into Tachycardia or AF before dropping back to whatever the rate was before. At its worst this happens several times a minute at its best a few times through the day.

I am exhausted all the time and not able to do much. It is unclear if this is caused by the AF or the meds - probably a combination. My heart rate is very low frequently dropping below 45bpm at rest during the day and at night it has dropped to 35bpm but is normally between 38 and 40.

Whilst next steps are contemplated the cardiologist has suggested changing my medication. I was offered Amiodarone but a previous doctor and subsequent reading has put me off this because of the affect it can have on other parts of the body. I have also been offered Dronedarone but the recommendation is to try is Sotalol.

I know medication affects us all differently but I would really appreciate hearing the experience of others.

Sorry for the long explanation and thank you for any help you can give.

[mav7]

Have the doctors discussed a pacemaker ?

Very low heart rate, but apparently the doctors are not concerned ?

[Kingfisher44 in reply to mav7]

Hi mav7 - I have been offered another ablation although they didn't seem confident it would be successful due to the non pulmonary triggers . We did discuss a pacemaker and then the ablation of the AV node. Concern was raised that because I am 50 I could possibly need quite a few batteries each battery change carries a risk. Having only just survived the last ablation I am terrified of another operation! I think the low heart rate is a concern only because I am not feeling well and it is impacting on my quality of life. Although not perfect the meds I am on are holding the AF. My thoughts were maybe to try some other medication in the hope that I might feel a bit better on it. Although I have lived with AF for 10 years I was only diagnosed in March last year. A lot has happened and I feel I need some time before having something done that is completely irreversible.

[mav7 in reply to Kingfisher44]

Sometimes a challenge to find proper/meds dosage. Consult with doctors.

Best to you !

[Spin-off]

it’s all so complicated isn’t it? Like you I had a tamponnade after my fourth ablation. I was then given Soltalol to take alongside Apixaban. Everything was going fine and I felt well but 18 months later I had another AF episode combined with bradycardia and was in hospital for three days. I can’t take Flecanide, loads of scar tissue in heart now and amiodarone was the only way to revert me to NSR. That was September last year. I’m doing ok and having regular blood tests but I’ll be having a scan on my lungs next week because of breathlessness and coughing. I think I will opt for pace and ablate when I see the cardiologist in March. I’m older than you -66- but I understand your concerns about having P&A at relatively young age. The tipping point for me is QOL. Bouncing from episode to episode is starting to destroy my confidence. And each new drug brings new challenges. P&A will hopefully give me a consistency and wellness that I haven’t had for a while. Keep talking to people and considering. Stay positive. I wish you well.

[Kingfisher44 in reply to Spin-off]

Thank you - and I agree it is so complicated! I have been told my heart is in good shape with very little scaring. It is one of the reasons why it would be good to find another way than P&A at this stage. I really hope things go well for you so you regain that confidence to enjoy life. Take care

[oscarfox49]

As you say, every patient is different, but Sotalol has worked for me in keeping AF under reasonable control since 1995. I take just 80mg a day in two 40mg doses and although I am in permanent AF, the rate control makes me frequently symptom free. It's harder now with exercise and exertion but I am 76 and had a stroke a couple of years back, so I can't complain.

For what it is worth my cardiologist (a rude hopeless one I saw a good year ago) told me Sotalol was old hat and I should be taking Nebivolol. I think he was wrong.

I rather think it is a matter of what works for individuals. Just get the best advice you can.

[Kingfisher44 in reply to oscarfox49]

Thank you - helpful to know Soltalol has worked for you. I have been lucky as the cardiologist I have been working with has been really helpful. Take care

[oscarfox49]

Good luck if you opt for Sotalol. I will be interested to see how it works out and if it helps you more than your current medication has.

[Windlepoons]

Sotalol has not stopped AF episodes completely for me but it settled down my bad episodes. I now only take it as a pip which actually seems much more effective at putting me back into sinus. Maybe because I'm not taking it all the time it works better.

[Kingfisher44 in reply to Windlepoons]

Thank you - Like you at some point I would love to lower the dosage but it seems quite a balancing act - slow HR or AF!

[KentAndrew]

We all respond to medication in different ways, I took Bisoprolol and Flecanide for about 4 months and whilst they helped my AFib, I felt it made me ‘unsettled / anxious’, I also had cold extremities and started to have hand tremors.

My Consultant changed them to Sotolol and my conditions improved almost immediately.

I had an ablation in June 22 and although still having AFib episodes, under supervision I am weaning myself off Sotolol.

[Kingfisher44 in reply to KentAndrew]

My experience was very similar with bisoprolol - I just couldn’t tolerate it. I think that’s why I am finding it more challenging to change. Thank you for sharing your experience and really hope your ablation helps you to get medication free! Take care

[GooseEggs]

Amiodarone created a mild case of pulmonary fibrosis (lung scarring) in my mother after only a month of low dosage. She had ALL the warning symptoms to it (coughing, SOB, etc). Her cardiologist denied it could be the Amiodarone but the pulmonologist confirmed it and said take her off it immediately. It also caused her to weaken and fail in many other ways. I'm convinced if she continued on it as her cardiologist wanted, it would have killed her within weeks. She had a hyper-sensitivity to it, which her cardiologist still refuses to believe. (You have to be careful of the doctors' egos as much as the drugs.) Dangerous drug. A new cardiologist has her on Dofetilide (Tykosin) and she is able to tolerate that drug.

[Kingfisher44]

Thank you - and your poor mum! I have heard so many bad things about amiodarone that when it was offered I asked if there were alternatives. That’s when Sotalol was offered - not one that I have heard a lot about hence my question.

[mav7 in reply to Kingfisher44]

Hi King

healthunlocked.com/search/p...

In addition to my previous comments, you may want to discuss the minimaze procedure with your doctor. Especially at age 50. Link above has previous threads.

[Janith]

Hi … l am on sotalol… 80 mg 8 am and 8 pm … zero side effects and controls afib quite well. I definitely think that it is an excellent product. Best, Jan

[Kingfisher44 in reply to Janith]

Thank you - that’s helpful to know.

[4chickens]

Sotalol was ok for me in small doses 40mg twice daily but anymore and I became dizzy and spaced out. It wasn’t until I stopped it that I realised how unlike me I had felt. Have you considered exploring the minimaze, although not widely available it is becoming more so.

[Kingfisher44 in reply to 4chickens]

Thank you - someone else mentioned minimaze. I followed the search link but a can’t say I really know what it is and it seemed only a couple of doctors could perform it.

[4chickens]

It a surgical ablation approach to treating AF but done as a keyhole surgery on the outside of a beating heart. It’s performed by a cardiothoracic surgeon. It can be combined with a catheter ablation done by an EP at the same time or the catheter ablation can be done about 6 weeks later. At the same time the left appendage can be clamped or removed which should result in not needing anticoagulants. It is available in England but not widely on the NHS. it’s tends to be offered for permanent and persistent AF. I’m scheduled for the hybrid minimaze, that’s both types at once in Sheffield but unfortunately this has been cancelled twice now. I originally saw Mr Hunter the surgeon privately but he immediately put me onto his list via the NHS. Hope this helps, lm no expert the person who can probably guide you most is mummyluv on this site.

[Kingfisher44 in reply to 4chickens]

Thank you for your help - I will look into it further. I hope you manage to get your procedure done soon and it works for you. Take care