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how many af episodes in a month is too many?

Tilly1957 profile image
Tilly1957
ā€¢22 Replies

so, I have my new betablocker (appears to suit me) and a pip, which appears to work quickly with minimal side effects ( a stinking headache and low bp šŸ¤£)

In July I have had 3 episodes of af. I know thatā€™s not much in the grand scale of things, but when do I go back to the gp and say the management plan is not good enough? Up until this year I could count on one hand how many af episodes in a year! I have probably had a dozen at least since the beginning of this year . I am lucky in that the hot weather didnā€™t bother me in regard to af .

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Tilly1957 profile image
Tilly1957
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Teresa156 profile image
Teresa156

Hi Tilly,

Iā€™ve just seen your post come up whilst browsing, so thought Iā€™d just answer you as best I can, but Iā€™m sure others will come along very soon with more experience in getting more episodes. Iā€™m paroxysmal but I take a daily Bisoprolol 1.25 which is currently keeping it away, but we are all very different as you know.

Please can you advise if you are under the hospital, have seen a cardiologist and have had investigations done, as you mention just a GP is advising you? GPs arenā€™t as educated in atrial fibrillation and if you are only seeing a GP, I think you need to ask to be referred to the hospital for further checks as your episodes are becoming more frequent.

It does sound like you might need to change or increase your current medication and perhaps introduce an anti-arrythmic medicine of some sort, but this can be prescribed by a cardiologist based on investigations of your heart.

Teresa

Tilly1957 profile image
Tilly1957 in reply to Teresa156

Hi Teresa, I have had paroxysmal af for a few years now. Saw cardiologist at the start for the diagnosis (5 or more years ago) bisoprolol didnā€™t agree with me but didnā€™t realise it was that making her feel so rough (I have posted about my bisoprolol stuff) so now I am on nebivolol plus verapamil as a pip. (Pip prescribed after my first trip to a&e with af that was peaking higher than usual with the hr. ) the current episodes donā€™t send the hr so high, thank fully. I will leave a message at gp surgery Monday asking if I can be referred to an EP. I have to be carful what meds I take as I react to non-active ingredients, especially starches. I am in favour of ablation but it has never been discussed. GP has also referred me to a rheumatologist with suspected fibromyalgia. The designated nurse practitioner for AF at my surgery is not someone I have had confidence in , in past experiences. The nebivolol appears to be doing a good job in keeping the rate lower in an episode, but itā€™s getting disruptive to me quality of life! Although when I read other peoples stories, I think I am lucky x

Teresa156 profile image
Teresa156 in reply to Tilly1957

Hi Tilly,Iā€™ve since read some of your posts and can see youā€™ve been on quite a journeyā€¦thanks for explaining and looks like you have a plan then for tomorrow in ringing to be referred. It sounds like you do need to see a person who is more ā€˜professionalā€™ in this field, especially as you havenā€™t seen someone for years. Good luck and keep chasing them, if you donā€™t hear anything šŸ˜Š

Teresa

Tilly1957 profile image
Tilly1957 in reply to Teresa156

Thank you, Teresa x

Not sure there is an answer to that question Tilly but from what you are saying, your AF is progressing but fortunately appears to be fairly well controlled with medication. Iā€™m guessing here, but if you are 65, perhaps your question ought to be, when should I start to think about alternative treatments and that depends on whether or not you are ready to consider having an ablation. The only way to find out if an ablation is suitable for you is to have a conversation with an EP. Unless to do that privately, the only way thatā€™s going to happen is if you talk to your GP first. Personally, I am pro ablation and the general thinking is that the sooner you have one the better but remember, even if you were put on the list today, it could take a year before you get the call, so plenty of time to change your mind should your situation change.

Will be interesting to hear what others sayā€¦ā€¦.

Tilly1957 profile image
Tilly1957 in reply to

Agreed, I think I will ring the surgery Monday morning. X

Buffafly profile image
Buffafly

If you feel itā€™s too many then it is.

Tilly1957 profile image
Tilly1957 in reply to Buffafly

thank you x

secondtry profile image
secondtry

I would say that is too many episodes. I would make a private appointment with a cardiologist and discuss different doses of Flecainide and other solutions. Also read up here and elsewhere on Lifestyle changes to complement the agreed next move.

Griffin9 profile image
Griffin9

Once a month was too many for me.

MarkS profile image
MarkS

I was getting AF every 3 days for one day - i.e. 10 a month, which was OK. However, it then started increasing to 80% of the time when I decided to have an ablation.

Ronnieboy profile image
Ronnieboy

I was on bisolprolol for 10 years 2.5 mg rising to 3.75mg ,my heart rate was low 40s,I used to get missed heart beats ,and sudden fast heart beats up to 70/80,I decided to phase out bisolprolol over a period ,my GP ,agreed and for the past 2 years I've not had a single problem ,hr is still low but edging 50,BP normal and what seems a perfect rhythm,I'm doubting whether Ive actually got AF or indeed have ever had it.

mjames1 profile image
mjames1

The answer is when you think it's too many because afib is all about quality of life. So, if you're ok with it, then the current plan is ok. If not, the plan is not ok. Also, keep in mind that afib tends to be progressive, so what is ok today may not be tomorrow. If you're not ok with it, or want to get ahead of the curve, next steps could be a daily anti-arrhythmic like flecainide or an ablation.

Jim

Tilly1957 profile image
Tilly1957 in reply to mjames1

Thank you - first step is to get past the gp! X

Nigel2000 profile image
Nigel2000 in reply to mjames1

For a long time I took the commonplace, ā€œafib is all about quality of life,ā€ as afib doesnā€™t have serious ā€œrealā€ dangers and so I should be able to handle it (unless I was a whiner). It seriously increases the threat of stroke and can get worse over time till one is debilitated. So, I try to avoid using it.

Tilly1957 profile image
Tilly1957 in reply to Nigel2000

Thank you. Not sure what your trying to avoid using ? ā˜ŗļø

mjames1 profile image
mjames1 in reply to Nigel2000

I don't think "not being able to handle it" equates with no real dangers. If you can't handle it, that's enough reason to look at a different treatment plan because that impacts quality of life. I don't think "It's all about quality of life" is the same as "it's ONLY about quality of life", but I do get your point.

Jim

mjames1 profile image
mjames1

Yes, my experience with GPs in the US is that they know less about afib than a lot of their patients with afib! Cardiologists can be a lot better. Ep's the best, however many are biased toward ablation, i.e. to a man with a hammer, everything looks like a nail. To an ep, every patient with afib looks like they need an ablation.

Jim

BlueINR profile image
BlueINR

Episodes of what? Some arrhythmias like PVCs are usually no concern, while others should be corrected as ASAP. I'm guessing you're talking about afib. If it goes away by itself, that's pretty good, but that doesn't happen to everyone.

Afib is not a fatal arrhythmia, but it could turn into one. It's best not to ignore. If meds are not working, cardiologist should be looking at other options, and hope your cardiologist is an EP, electrophysiologist. If not, I'd want to be be seeing one ASAP.

Tilly1957 profile image
Tilly1957 in reply to BlueINR

Hi BlueINR, I used to just wait the Af episodes out, but it was exhausting. Now it appears to be becoming more frequent and disruptive to my quality of life, so I guess itā€™s time to talk to a professional about it - I havenā€™t seen a cardiologist since I was diagnosed over 5 years ago. Thank you šŸ˜Š

DawnTX profile image
DawnTX

In April I had already had 226 events for the month. My procedure was scheduled for the following week. I have an implanted monitor that records them. A normal ekg can only pick up during an event. I had a brand new Dr that was our first visit.

Tilly1957 profile image
Tilly1957 in reply to DawnTX

Wow, thatā€™s a lot! Where you aware of all of them? My husband had a loop recorder implanted, resulted in a pacemaker being fitted at the start of this year. What indicated the need for the recorder? Hope you are feeling a lot better now šŸ˜Š

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