AF taking a different direction?? - Atrial Fibrillati...

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AF taking a different direction??

Kjsp profile image
Kjsp
23 Replies

Had an AF attack yesterday and it was terminated after 3 hours with my PIP 200 mg Flecainide and half a metoprolol tablet. This is about average and I have attacks every 7 to 10 days. After a few hours rest I went for a walk but didn’t feel great, lethargic and generally off par. I kept checking my apple watch and my heart rate was up to 120 which for me in sinus rhythm is quite high. My resting heart rate is low 40s and can drop to 37 during the night and has been like this for years. Even when I exercise it rarely goes above 100. I like to think this is because back in my healthier days I was an avid runner and triathlete. Anyway on settling back down at home I knew I was back in AF so took another 100mg Flec and metoprolol . That is obviously my maximum for the 24hr period and don’t normally have to reach the limit of medication. Again I went back into sinus rhythm after a couple of hours but my heart rate has remained at a steady 90 and even now after a nights sleep is still high. I know for most that is a safe reading but for me it is double what it normally is! I don’t feel great and am definitely not my normal self. Sorry for long back ground ,I will get to the questions now! Do you think I should take another dose of flec to hopefully put myself back into my normal much slower rhythm ? Although technically I am in SNR Or shall I take a small dose of Metoprolol? Or shall I just ride it out and see how long this lasts? I know you can only give opinion but to be honest your words of wisdom usually are of more benefit and comfort than hanging on to 111 to speak to a doctor that never calls back. I’m only slightly knocking the NHS as they are in general doing a fantastic ,underpaid ,thankless job!! This is so different for me , is this just another nasty little route in my AF journey?

Have had a successful Flutter ablation in 2017

2 ablations for AF which were an improvement but looks like I’m on the slippery slope down again!!

Next appointment with EP in late December which will be my first face to face for 3 years!!

If you made it to the end, Thank you

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Kjsp
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23 Replies
Buffafly profile image
Buffafly

We are not meant to give medical advice but I don’t think you should take more Flecainide because even though you have had a flutter ablation it can be proarrhythmic. I personally have a strict limit on my rate lowering meds because my cardiologist said that if I took a big dose and then converted my heart rate could then be dangerously low until it wore off. So unfortunately I do think you should call the dreaded 111 who also unfortunately will probably send you to the even more dreaded A&E but better safe than sorry. When your heart behaves in a way that’s unusual for you it should be checked out ❤️‍🩹

Kjsp profile image
Kjsp in reply to Buffafly

Thankyou

I will call them now

CDreamer profile image
CDreamer

Hi - I agree with Buff - not a good idea to take more Flec which is a rhythm drug and therefor if you are sure you are not in AF then it’s the 111 route I’m afraid or go to A&E and get a full 12 lead ECG.

What are your instructions re: Metoprolol? As a beta blocker that may be advisable to slow the HR but really you need to have an instruction from a doctor.

I totally get your frustration with being unable to access. I’m not sure if the AFA phones are manned on a Sunday but it’s a thought? Hope you feel better soon.

Kjsp profile image
Kjsp in reply to CDreamer

Thank you for your kind reply , just trying to access 111 now

jeanjeannie50 profile image
jeanjeannie50

I used to take Flecainide and Metoprolol and in your situation, not that I'm telling you to do this, I would have taken another quarter of a Metoprolol. It does sound rather like you may need to take medication on a regular daily basis.

Jean

Kjsp profile image
Kjsp in reply to jeanjeannie50

Thank-you Jean, yes something to discuss with my EP in December.

After consulting 111 and a quick call back from doctor , as I was going in and out of fibrillation with higher than my usual rates.I was carted off to local A &E. They were very kind and I rode it out there and am now home back in NSR and resting.

Once again Thank you for kind replies xx

Karendeena profile image
Karendeena in reply to Kjsp

Kjsp,this is precisely why my EP says sit it out, as eventually you usually revert to NSR without intervention. In fact heart monitors make you more stressed which in turn makes afib worse. The only time I would go to A & E is if I feel really unwell, breathless or pains in my chest

Bhoyo profile image
Bhoyo

Good to hear you are back in NSR and resting up. I am also on PIP Flecainide and Metoprolol and had similar experience about 2 months ago. Normally back in NSR after 300mg Flec and 75mg Met(anymore and Bradycardia becomes an issue). I rode out 24 hours and HR was steady but still over 100, normally sits at 50-55. Took another 100mg Flec and 25mg Met but still no joy in lowering HR(with some flutters).Off I went to A and E as my concern was due to my CHAD score being 0 I am not on anti coagulant. Are you on anti coagulants? I also have upcoming appt with specialist and believe I will be advised to take daily medication (not keen) but I will be seeking advice re anti coagulants. Nil ablations to date.

All the best for future.

Kjsp profile image
Kjsp in reply to Bhoyo

Hi Bhoyo,

Yes I am on anti coagulants, rivaroxaban, due to previous TIA and my AF so my chads score is high. I have no issues taking these and look upon them as my security blanket. It’s a tricky one about daily medications and one I have discussed with my EP previously . I’m torn as to whether it’s better to take PIP medication 2 maybe 3 times a month or a daily dose of toxic medication long term? I would hope the daily medication would lesson the frequency of AF therefore preserving the heart but at what cost elsewhere in the body? Any thoughts ,experiences of this anyone?

Stay well and good luck xx

DebbiB28 profile image
DebbiB28 in reply to Kjsp

I've heard this before but why is flecainide known as a toxic drug please?

Unify72 profile image
Unify72 in reply to Kjsp

all these meds have toxicity… I’m caring for my mother who has been taking daily Beta blockers and last 3 months showed allergic reaction- horrible hives that have been impossible to treat. Finally got diagnosis from bloods of allergic med reaction. Researched BB and yes they have some pretty ordinary adverse affects as they build up over time. Had to go cold turkey off the BB and just managing with blood thinners and BP med (hypertension). After 3 days off it she was so much brighter mentally, more energy as is engaging in conversation again! I thought the lack of these things was her old age and brain deterioration… nope! BUT this morning she woke up in AFib with low BP. Her doc has always said just ride it out if HR under 120 AF and watch Bp most important. She can stay in AF for 4 days sometimes. Now using Metoprolol as PIP for the first time… 25mg an hour ago… fingers crossed it works and we don’t have to go back on daily doses!

Sorry for long story! Just found you guys and as a carer not a sufferer, you have been most helpful!!

Thanks from Australia!

BlueINR profile image
BlueINR

A walk might not be the best activity after an episode of afib. Might be good to rest instead.

Qzwxecrv profile image
Qzwxecrv in reply to BlueINR

Some people find exercise helpful while in Afib. Unless your doctor tells you otherwise I would consider exercise as important as any medication in living with Afib.

BlueINR profile image
BlueINR in reply to Qzwxecrv

I didn't need a doctor to tell me it's not a good idea to take a walk when my heartrate is 140+. I would not dream of any exercise with a heartrate like that. Glad exercise works for some, but with a heartrate that high, I wouldn't dream of it. Every time I've had afib, there's nothing I can do with it.

I don't live with afib. I've had way too many episodes, but hoping my latest "pace and ablate," will end these shenanigans.

Qzwxecrv profile image
Qzwxecrv in reply to BlueINR

I never suggested someone having an Afib event with a pulse of 140 bpm go out and exercise. I simply stated that some people in Afib find exercising helpful. Everything I have read suggest exercise is very beneficial in the treatment of Afib, but first clear it through your doctor. You don’t need to go out and run a marathon, you just need to move. Good luck with your pace and ablate.

Ppiman profile image
Ppiman

I cannot know for sure but as you are in NSR it is the rate you might need to reduce, so a beta-blocker rather than a rhythm control medication, seems appropriate, but a doctor's advice is the way to go.

Steve

Racquet profile image
Racquet

I resisted taking Flecainide on a daily basis and thought I’d get by doing the PIP thing. It worked for awhile, kinda-sorta, but in between actual AF episode there were frequent “almost” episodes.

To cut to the chase, I relented and went to a 50mg twice a day dose and it’s been nearly 2 months without any episodes. I pray writing this isn’t bad luck if you know what I mean.

irene75359 profile image
irene75359

I also take flecainide as a PiP but have far less episodes, one in the past 12 months. My doctor said if I start getting frequent episodes then it would be time to take flecainide daily instead of as a PiP. Not medical advice, just what works for me. But I can see that might cause you problems if your heart rate dips too much. Hope you had some sound advice from 111.

JefferyW profile image
JefferyW

Do you have an Arrythmia team at your hospital? I see you are due an appointment with an EP late Dec and wondered if it were possible to speak to an Arrythmia nurse at the same centre in the meantime? In my experience they are more knowledgable and responsive than 111 and details of your consultation would be available when you get to see your EP. May be worth investigating. I hope you feel better soon with some resolution.

Best wishes

Jeff

Kjsp profile image
Kjsp in reply to JefferyW

Thank-you everyone for your kind replies xx

bassets profile image
bassets

I hope you are feeling much better and the hospital sorted you out - for the moment at least. best of luck and wishes.

Karendeena profile image
Karendeena

Hi kjsp, I have prolonged afib episodes that go on for anywhere between 30 hours and 48 hours at heart rate of 120 plus. My EP (who is a top professor) tells me to sit it out as hospital will only monitor as I am medicated. I usually flip back into NSR eventually and it often leaves me wiped out. At the moment my paroxysmal afib has been coming around 3 times a year but ai have had 2 in two months so I suspect it is progressing. No ablations as yet but I do have flutter as well as afib. I would sit it out personally, assuming you are on an anticoagulant

secondtry profile image
secondtry

My cardiologist favours regular daily flecainide rather than the PIP roller coaster for the heart.

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