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Confused

irene75359 profile image
9 Replies

The selection for the groups in the AVATAR trial took place a couple of weeks ago (three groups consisting of two types of ablation or medication) and I was selected for medication.  I decided to pull out as the medication route meant being having to be available at various dates during the whole summer. But even if I had been chosen for an ablation, I am not sure I would have gone ahead, and have an appointment for a second opinion from Professor Schilling on Tuesday which I made before the selection process.  Had I been in the ablation group, it would have meant having an ablation after two shortish episodes, which whilst really unpleasant, weren't anywhere as severe as those suffered by others in this forum.

I am just so confused.  The trial EP looked at one Alivecor reading (taken at the beginning of February) and said probably AF but I had no symptoms.  Since then I have had quite a few ALivecor readings which say unclassified (heart beat 80 - 90) but they were at times when I was really stressed. If I do a reading during the night, my heart rate can reach 90 when I am totally relaxed.  I am wondering if I am having nighttime asymptomatic episodes when I am asleep.  

I am so aware of every odd beat or what feels like a hollow 'thunk' in my chest but I don't know if I always had this or have just become more aware since the diagnosis.  I don't know how much to blame Bisoprolol -  I was prescribed 2.5mg a day which made me feel very strange, breathless and tired, so I stopped completely for a month.  However, my heart rate went over 100 (at night again), so I now cut the tablet in half and take 1.25mg a day.  I feel marginally better but still need to sleep during the day.

Sorry for this long post, but confusion and extreme anxiety doesn't always happen to the most worthy, and I know I am so lucky in comparison to many here.  I would much appreciate your thoughts.

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irene75359
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9 Replies
souljacs4 profile image
souljacs4

I would be really interested in what professor Schilling has to say good luck.

irene75359 profile image
irene75359 in reply to souljacs4

Thank you - will keep you posted.

cali111 profile image
cali111

you sound like I was for about 10 years but it never bothered me so I did nothing.  I have now developed permanent AF but my heart rate is controlled by 125mcg of Digoxin, and my EP is not keen to ablate due to the high risks involved and the lack of success in permanent AF with this procedure..  I do get breathless but I just slow up and it doesn`t worry me.  I do not think I will get better, sometimes when we get older it is just a case of acceptance, not cure.

irene75359 profile image
irene75359 in reply to cali111

If you had had the opportunity of an ablation 10 years ago, would you have taken it then?  My problem is the side effects of a very low dose of beta blockers!

Dodie117 profile image
Dodie117

Have you had a 24/48 hr monitor to see if you are having AF and unaware of it.  

When I was first diagnosed I was asked to take part in a trial testing meds or ablation.  I declined as I was keen on ablation and wanted to make the decision based on ep advice rather than a random decision. I was having very symptomatic episodes 3 or 4 times a week lasting for around 6 hours. 

Had my ablation and all clear for nearly 3 years and counting. 

It sounds like you need more investigation before deciding the best way forward for you. Your appointment next week will hopefully clarify things.

Good luck 🍀

irene75359 profile image
irene75359 in reply to Dodie117

Thank you.

I had a 24 hour monitor in December which didn't show AF, only isolated VEs including couplets and infrequent SVEs.  But the arrhythmia nurse did point out that 24 hours isn't very long.

Looking forward to the appointment.

Sarah57 profile image
Sarah57

Hi

I am on the AVATAR trial and got given stream lib

Ne ablation route which I was waiting for on Nhs list!

Hope

Sarah57 profile image
Sarah57

Sorry sent accidentally!

Anyway, on for streamline ablation on 8th April in Brighton.

Will et you know how it goes!

I have PAF, so not all the time, but has got steadily worse and I needed drug change anyway, so was happy to speed process up and either option suited me really.

Hope you get sorted ok.

Best wishes

Sarah

irene75359 profile image
irene75359

Thank you - will be interested to hear how you get on.  When were you diagnosed?

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