Almost 14 months on from my 3rd ablation and having episodes of PAF just about every two weeks, which can last anything up to 36 hours at a time, I got in touch with the arrhythmia nurse at the hospital where the ablations were performed to ask for some advice as I was discharged by the EP at the end of last year, so would I have to go through the GP referral route again etc.
At his suggestion I forwarded several Alivecor readings for him to show the EP who did my last ablation. Got an email back this morning to say that Alivecor shows definite AF so EP has ruled out any further ablations as he feels he did as much as possible last time, so it looks like this is my lot as far as that goes.
At present I'm on PIP Bisoprolol and Flecainide but according to the arrhythmia nurse Flecainide should, if effective, bring about nsr within about 2 hours of taking it, which it never has. So the suggestion is that I take Soltalol instead as a PIP, but having trawled through all the previous posts on here about Soltalol I'm not really feeling very comfortable about taking it without knowing more about it. I already have a very bad reaction in the transition between AF and nsr, having had more than a couple of blackouts which are now getting worse each time, and it would appear that a similar reaction can happen with Soltalol.
The arrhythmia nurse has said if I'm happy with the suggestion he'll just write to my GP to authorise the Soltalol but it seems a bit casual to just swap over to this without any monitoring to see if it suits me or not. Has anyone else taken it as a PIP and did you have any side effects or did it work effectively?
Sorry for the long post, I realise I've gone on a bit but getting that email response this morning has knocked me sideways and thrown up so many questions that have gone round and round in my head all day and it's taken me til now to feel calm again.
Thank you all you lovely people who have taken the time to read this. Knowing this community is there helps such a lot.
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mrsg46
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Sotalol is a rate control drug - a betablocker. Flecanide is a rhythm control drug. I do not recommend that you try this option without a face to face consultation .
Personally I don't like the fact that your EP discharged you so quickly after your 3rd ablation. At the very least you should still have direct access to a specialist Consultant. My experience with telephone consultations with Rhythm Nurses has also been less than satisfactory.
My suggestion is to see your GP and see if you can be referred to another Consultant for a second opinion. There are no easy answers but do not give up yet.
Sorry to hear this. The best thing, surely, is not to have had the suggestion to try any drugs on a daily basis.
I think, like Pete, that I might try a second opinion from a different EP.
Has how much flecainide to take as a PIP been fully discussed and could your present management of your AF be tweaked?
I fear I am six months behind you as I still get AF eight months after my third ablation, though only occasionally. To my relief when I saw my EP last month he didn't suggest a fourth ablation or a different drug regime (I take flecainide as a PIP) but wants to see how things go and I have an appointment in January. I was hopeful I was improving until I had AF again about a week after the appointment. I am happy though not to be depending on 300mgs of flecainide a day like I was three years ago.
I disagree with Pete about the Sotolol, it is both a rate AND arrhythmic drug, that is why a lot of cardiologists quite like it.
It was removed from the list of drugs recommended for the treatment of Lone AF by NICE a few years ago because it not only affects the atria, but also the ventricle and in a very few, rare cases has caused the heart to stop. I refused to take it, which caused an upset with my then cardiologist.
If Flec is not stopping the AF then there doesn't seem to be much point in taking it, to my way of thinking.
I do agree that asking for a second opinion can't hurt.
It must have been such a blow for you, I can see why you feel you have been knocked sideways. I am now in a position that couldn't take either rate or arrhythmic drug but so far so good, no AF after 2nd ablation - 2+years.
One suggestion, you say you have blackouts in conversion, do you know about autonomic dysfunctions? If you have low or unstable BP you might look on the POTs website as there are some cardiologists who specialize in autonomic dysfunctions. There are some good suggestions about how to improve Vagal tone which might just help the AF.
They have a list of doctors on the site and good info generally, I am taking Pyrisostigamine and for the very first time in my life have a stable BP - I can't tell you how much better I feel! I wasn't aware that it also is a medication to stabilize BP in autonomic dysfunction until a few weeks ago and if I had known I would have been banging desks a long time ago for a referral to a autonomic cardiologist. Just a thought, may not be appropriate for you but thought I would mention it.
Very best wishes, do keep posting and let us know how you get on. CD
Sorry to hear this. It does seem a little casual but it could be that is the correct decision. However I think that a discussion is definitely warranted and a risk assessment. I also think that a discussion about the transition is needed and how to manage to avoid injuries, etc.
From where you are now my initial thought is that there are three possible routes. Also depends on what was in your discharge letter. First is to go to your GP and pretend that you haven't had the conversation with the arrythmia nurse and get a referral back to consultant. Obviously this option could annoy consultant and there maybe a reaction from your GP. Second is to see GP for a referral but tell GP about conversation. GP may not refer. Third option is to see EP privately. Fourth is a referral for a second opinion. My thought is if doing 4 then do so after seeing original EP through 1 or 3.
I have taken sotalol before I was changed to flecanide. I had no side effects on sotalol and I found it very effective on bringing back to SNR. But I took it twice daily and eventually my body needed the top dose so I was changed to flecanide. But it certain ly works more effectively when I go into AF. Couple of hours was all it took.
Many thanks to all of you who replied with such good advice and, just as importantly, lots of support, which I am very grateful for.
The suggestion that I should go for a second opinion echoes my own thoughts, I'm not prepared to give up at this stage and also, as I said, not happy about taking Soltalol (or indeed any other medication) without fully discussing the pros and cons with someone. I'll look at the options on how to go about this as obviously my notes from both hospitals where I've been treated will be needed, I would have thought, in order for whoever I see to make a judgement on where to go from here.
I'll let you know how it goes and thanks again, what would we all do without this wonderful forum, such a huge help.
in June I was admitted to the hospital once again in Afib, it had been discussed 1week earlier that they would start me on a similar drug (dofetilide), but I had to be in the hospital. On the first dose in 8 hours I went into NSR, then 3 hr after the second dose I went into a fatal rhythm and cardiac arrest.. They revived me with cpr, drugs and CV. I was told since I had that reaction I would also not ever be able to take Sotalol either as they are similar. Apparently a very rare side effect but it did happen to me. I have not had any ablations but they ran out of drugs to try to control the afib. I now have a dual pacemaker due to the very slow heart rate that I always have had, so far since June 21, NSR. I am only taking 25 mg metoprolol BID and warfarin. They are hopeful in my case that the pacemaker and drugs may better control the afib. I also was previously diagnosed with sleep apnea and that was addressed as well with cpap. All in all they are hoping the combination will be my best solution. I have been doing well. Can you get a second opinion?
@msrg46-I understand your frustration and concern. I had 1 ablation, have beentaking very low dose 40mg 2 times a day of sotalol and low dose of warfarin. This works for me. However it took 8 months to have NSR consitently and for heart rate, and heart rate recovery in exercise, and exercise ability to be back at healthy optimal normal behavior. The thing with sotalol and probably any other drugs taken for afib is that they trash minerals out of your body. Sotalol depletes your body of magnesium other important things as does the HCTZ I use for hypertension. SO, magnesium must be maintained. However it cannot be taken at the same time as sotalol of other drugs because it binds to the drug and prevents either the magnesium or the sotalol fro,m working. I usually take magnesium 3 hours before sotalol. The anti arrythmis drugs are also related to something on your ekg called a qt interval -how long it takes your heart to recharge electrically. It should not be too long- because then your heart just stops. This sounds very intimidating, but it is amatter of balance. Also, you may not be aware of all the triggers that can start afib or have even been told about them. The more common ones are salt, sugar, caffeine, excessive hot weather, alcoholic beverages., processed foods, artificial ingredients, and for my I find anything I happen to be allergic to, also large macrolide antibioticvs (biaxin and azithromax for ex.) and quinolone antibiotics (for. ex. cipro, avelox, levaquin, anything ending in--floxin)., for me I find, not eating enough protein, not geting enough sleep, overdoing the physical activity because I feel great. I see my ep every 6 months for an ekg, measure of qt interval and blood test (comprehensive metabolic panel, and rbc magnesium)-to check if the drug is harming me and to make sure I am in NSR., and that my magnesium levels are high enough. Since it cannot be directly measured how much magnesium is in you cells or in the extra cellular matrix just outside your cells (hold cells togethis-collagen); the most accurate blood test commonly used is red blood cell magnesium. if the uppre limit of the range for the test is 6.5-your result should be 6.5 to mean you have enough magnesium inside your cells.Also magnesium deficiency ( which is very common), is also a caise of abnormal hear rythems
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Am I now in permanent AF?
Flecainide daily without beta blocker 
Things to do to hopefully stave off having an ablation?
