Close call: I think the entire world knows... - AF Association

AF Association
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Close call

Hoski
Hoski

I think the entire world knows how much this old nurse doesnt like to take drugs. Im happy to report out of the last 4+ years, Ive not had any a fib visits in the last 22 months( but who’s counting😉). Ive been on pip most of the 22 mo but last aug I went back on Flecainide daily ( at my request) to see me thru 2 knee replacements last fall. I made it thru those ok. So these last 2 mo( with cardiologist baited breath) , Ive tried to wean off flecainide. I got down to half dose but last night my ticker was getting cranked up, the old familiar pre-a fib neck discomfort was there... I thought “ oh crap”. So I popped 100mg of flec and 25mg of metoprolol, added them back into my medication box and have decided to take the dam pills every day and shut up about it😩 Today my heart is back to its happy self.

So I am publically saying I will take my heart meds twice daily, quit playing around and be thankful I escaped the bullet last night💜 Im sure my heart doc will have less eye rolls when I walk away too...

66 Replies
oldestnewest

I sympathize but not a lot because I can't take those meds at all 😊

Hoski
Hoski
in reply to Buffafly

Yes I really believe I should b more thankful that I can and so far dont notice any side effects. Thankyou💜

BobD
BobDVolunteer

It is damned annoying when you get that close but I think you did the right thing. Since my last "treatment" I've been back on the pills myself and not happy but we are alive and kicking, if not as hard as usual.

Hoski
Hoski
in reply to BobD

Yes you are right. My hubby is happier when I take my meds and quit playing cardiologist.

Tudee
Tudee
in reply to Hoski

Yes Hoski but how many more will admit that they will “self medicate” from their supplies when faced with a protracted bout of fast A.F, and accompanying panic or possibly a visit to A&E,

I feel another survey coming on Jerry. Dee

Hoski
Hoski
in reply to Tudee

😩😇🧐. Asking for a friend...🤣🤣🤣

Frances123
Frances123
in reply to BobD

Do you take Flecainide Bob and can I ask how long you were pill free apart from warfarin I mean. I only ask as at next checkup (as long as everything is ok) they are going to start reducing my Flecainide. I’ve only ever been on lowest dose 50mg bd. Thanks.

BobD
BobDVolunteer
in reply to Frances123

I took propafanone Frances and was drug free (apart from warfarin) for about 11 years.

cuore
cuore
in reply to BobD

After my third ablation (May 27,2019) I have been taking Propafanone 300mg x2. During this time, I have been AF free. That's eight months now. How long were you on Propafanone? You do say you were drug free for 11 years. At nine months, I intend to ask for a review.

BobD
BobDVolunteer
in reply to cuore

For Af about three years. Now for tachycardia.

cuore
cuore
in reply to BobD

Sorry, I forgot to ask the dosage and whether it was ever reduced. Three years is a long haul for me if I am kept on it for a long time also. So, I guess I'm asking how does one know when to come off the drug and to reduce dosage (obviously it is in the hands of the EP)?

Granted time is definitely a factor such as having no AF episodes in a targeted time period. Would age also be considered? I guess how one feels could be added. Exclude side effects because they could be handled by switching to another anti-arrhythmic drug.

This is the reality of aging --- drugs ( hypertension, anti-arrhythmic, anti - coagulant). But, the cup is half full; I feel great.

I got down to 2 x 50 of flec and must admit the temptation to shave a bit off each pill is ever present. What is it with us nurses??

Hoski
Hoski
in reply to Bagrat

I dont know, its universal though!!! We old nurses are difficult patients, lol. I get by with 50 mg twice daily and metoprolol 12.5 mg twice daily. My heart was going a little too slow on 25 mg.

HiddenThis reply has been deleted
Bagrat
Bagrat
in reply to Hidden

Did it for my 70th and have just carried on!!

Alessa69
Alessa69
in reply to Bagrat

It looks fabulous 💖

Bagrat
Bagrat
in reply to Alessa69

It draws attention away from the rest of me!!!

😰 phew that was a bit too close for comfort Hoski...so pleased you managed to dodge the bullet 👍

Hoski
Hoski
in reply to TamlaMotown

Yes I figured God was sending me neon lights!!!

Loved your post. What dosage were you on when you started to wean yourself? I’m on 50mg bd and have been for 14 years. Had a cryoablation 4.3 months ago and at next check in July they are going to start reducing dosage With the view to stopping altogether I guess. Will be nice to tick one drug off list but will stay with them if I had too. X

Hoski
Hoski
in reply to Frances123

I was only on 50mg twice daily, then cut them in half for 3 wk then quit about 2 days before my heart started to panic. That morning my apple watch showed my heart rate had jumped up to 150 for a few minutes but no a fib. But that nite at bedtime, my heart was 100 at rest( normally 60) and the neck discomfort started in, same as when I used to have a fib episodes. So I know a storm was heading my way.

After three years of pip, then on after ablation

It gave me ill effects- and with metoprolol really made me jittery

also lengthened my R ? Wave on electrocardiograph - advised not to take

Hoski
Hoski
in reply to Tantaanna

Wow thats a little scary!

Glad you are OK your post did make me laugh though. Just had my 3rd successful Cv today so hoping it will last as long as the first one which was a year. Am still on list for ablation but having second and third thoughts. My knee is doing well now but have to keep exercising to stop it from stiffening up. I am thankful that neither my other hip or knee show signs of needing a replacement. ~At least now my joints should see me out. I am also very pleased to say that my PSA is still undetectable after prostate cancer treatment 3 years ago so really just got to get my AFib under control now and I will be going around like a 70 year old again! I am 77 this year so won't be able to turn the clock back too far LOL.

Hoski
Hoski
in reply to Desanthony

I think if people can choose what gender they are, we should get to choose our age!!! ( no disrespect intended to anyone) I will soon b 67 but maybe I will choose 8.... life was more fun at 8

Slim2018
Slim2018
in reply to Hoski

My mate is now deducting VAT from his age...works very well. I am no longer 64, I am now 51....

Hoski
Hoski
in reply to Slim2018

😂😂😂

Desanthony
Desanthony
in reply to Hoski

Right good idea deduct VAT!

Hoski
Hoski
in reply to Desanthony

What is VAT?

Desanthony
Desanthony
in reply to Hoski

Value Added Tax on some (pretty much the majority of) goods and services for sale in the UK. There are some things which are exempt this tax - childrens' shoes and clothes basic foodstuffs and if you are registered disabled you can claim the VAT back off disability aids and companies can claim VAT off things they buy for their business and such like currently at 20%.

Hoski
Hoski
in reply to Desanthony

Interesting.

morpheo
morpheo
in reply to Hoski

Bane of small businesses in the UK. Is it a biscuit, is it a cake? One has VAT one hasn't.

Hoski

Could you tell me about the neck warnings please

Hoski
Hoski
in reply to 7164

I get a weird tight feeling that starts in my neck and goes to my jaw. ( both sides)It kind of feels like Ive clenched my teeth shut a long time and the jaw gets tired. And the minute the a fib stops, it goes away. Not everyone gets the same weird feelings.

msw88
msw88
in reply to Hoski

I k ow that neck feeling...... unfortunately!

Hoski
Hoski
in reply to msw88

Not fun

msw88
msw88
in reply to Hoski

No it’s not! Hate it

Hoski
Hoski
in reply to msw88

Me too

john6
john6
in reply to Hoski

As you say not everyone gets the same weird feelings. I tend to get Afib most days on a lower end of the scale, it is manageable and I can mostly ignore it. I know a bad one is coming along when I get a dull ache just above the inside of my left elbow. The ache is like neuralgia - as usual the medics say, (they have not got it) - don't worry about it. I'm convinced that something is blocked in that area and perhaps stopping my blood flow.

Hoski
Hoski
in reply to john6

I find the human body fascinating. I think it tries go send up warnings sometimes. Thinking back on previous a fib episodes, the day they kicked in, I was feeling tired for no apparent reason also. Appetite not great, subtle things.

I understand that you have to be really slow weaning off, so that could be the problem. But you have to do what’s needed.

Hoski
Hoski
in reply to LaceyLady

The first time, heart doc said take a week. This time I stretched it out over 3 wk. 50 mg is such a small dose, dont think its a factor.

I am seeing my cardiologist on Thursday and already in my mind I am rehearsing the “ could I go down from 100 mg Flecainide twice a day to 50 mg a day twice or even how about 100 mg once a day at bedtime”....

Hoski
Hoski
in reply to Slim2018

Flec needs to b twice a day. Go ahead and ask, its reasonable. He/she will say yay or nay. Only down side is taking a chance on a fib returning and is 50 mg enough to chase it off.

Slim2018
Slim2018
in reply to Hoski

Wise words

Hoski
Hoski
in reply to Slim2018

I excell on advising everyone else on what to do. I just don’t follow my own good advice too often😂

Hylda
Hylda
in reply to Slim2018

I see my EP on 18th, but not even going to ask if I can reduce my 100 Flecainide twice a day down to 50, too scared to try it!

Di

Hoski
Hoski
in reply to Hylda

I totally get it💜

Equish
Equish
in reply to Hylda

I’m on 100 msg of flecainide twice a day and bisoprolol 1.25 daily. This has settled things down lovely. Just new to the Afib which started in beg December. My question I think is why reduce it. What long term effects does it have. I would be very scared not to take it. Also have been referred for ablation. I’m struggling with should I have ablation given that so many don’t work or take lifelong flecainide

Hylda
Hylda
in reply to Equish

I’m with you on ablation. At 76, will happily take Flecainide for as long as it works!

Equish
Equish
in reply to Hylda

I totally agree Hilda. I’m 63 and just wonder what the long term side effects would be from a slightly younger age

Hoski
Hoski
in reply to Equish

I have always gotten by great with no daily meds, just taking flecainide when I get a fib and it has always stopped. I asked heart doc to go on daily thru my couple months of knee surgery because I was afraid the pain of the surgery might stir up my a fib. Now, 3 mo after surgery, no a fib, I thought I could come off it. My heart disagrees. I tolerate flecainide fine, there is no real good reason not to take it so Im going to guit thinking Im bullet proof and take it and b happy it works for me. I think most old nurses think we can beat the system😂

secondtry
secondtry
in reply to Slim2018

I'm seeing mine on Friday and will ask the same question Slim, let us know how you get on. I suggest mine will roll the eyes and repeat the mantra if you are OK do nothing different........maybe right but it doesn't take into account the risk of future issues.

I didn’t have a great night last night, kept waking because HR rate went down to 52 😳 only take 1.25 Bisoprolol & 50 x2 Flecainaide

Hoski
Hoski
in reply to LaceyLady

It was not our night was it!!!

Hylda
Hylda
in reply to LaceyLady

My heart rate is in the 40s while I sleep, but arrhythmia nurse says no problem at all.

Why do you think you do that ? I also do it. and I'm not sure why. I know I don't know enough to be second guessing my Doctors , but I do. And they know it as I always tell on myself. Pam

Hoski
Hoski
in reply to sweetiepye

I think deep down that my body will heal itself if I eat right and exercise. So far it seems to b but Im now realizing these meds can b my friends, not the enemy.

Hi Hoski

Does your apple watch record your heart rate during the night?

Hoski
Hoski
in reply to Ianc2

Yes I wear it 24/7.

Thanks for posting, I read somewhere if on 200mgs/day its the first 100mgs reduction that has to be done very slowly BUT i am not suggesting you try that!!!

Hoski
Hoski
in reply to secondtry

Im going to be a good patient and quit playing doctor while Im ahead of the game....

I so identify with all you write! But you did the right thing. I cut my Flecainide down by half ready to give it up, and 3 weeks later the AF started again short bursts at first and then a few hours starting every afternoon! So I tried an extra PIP - no good. Then went back to the full 100mg twice a day. Much better! Only infrequent short bursts now.

Still convinced, like you, if I could find a magic food or supplement then I could stop the Flecainide...sometime. 😉❤

Hoski
Hoski
in reply to Coco51

Im not getting any younger, Im going to quit playing around while Im ahead! Im sure my doc will b happy about it too, lol

Coco51
Coco51
in reply to Hoski

👍👍👍

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