Permanent AF Also: Hi Pollywaffle 10. I... - Atrial Fibrillati...

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Permanent AF Also

Robyncarmen profile image
14 Replies

Hi Pollywaffle 10. I'm living in Perth WA also.

My father had Permanent AF died at 90 from Pneumonia. Both of my brothers have Af I now have permanent Af also.

I've not had an Ablation or a Cardio Version but it interesting that in Melbourne the research is being done I might check it out. Let's hope they come up with a cure.

It is exhausting at times with the Meds but my Cardiologists recommended that I take the Digoxin at night when I go to sleep so when I get up in the morning I don't feel so bad it's been in my system

For 8 or more hours. It' works for me as I'm now not dragging my feet in the morning anymore I'm actually bouncing out of bed & walking on my treadmill.

Just a thought for other people with af it might work for some of you.

Cheers love ❤️ this site.

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Robyncarmen
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Spiritji profile image
Spiritji

I also have permanent afib so nice to hear we can live long......I got off the digoxin and am now on Diltiazen for rate control and Pradaxa for blood thinner and it seems very good .....like I have good energy now.

Robyncarmen profile image
Robyncarmen in reply to Spiritji

Hey can I ask didn't the Digoxin

Work for you my friend. ????

I'm the same it's Permanent but I'm coping. It's interesting isn't it people don't really understand your energy levels when you first get diagnosed. You look healthy from the out side but there's lots going on inside. If you had a plaster on your leg it would be a different story ???? People are more visual I think. keep well

Cheers. Rob xx😃

That's great news. I too got into a terrible state, could hardly walk at times, then (after 3 failed attempts) my EP found a drug that worked for me and since then I've been back to normal, so know exactly how you feel. It's like having your life back.

Robyncarmen profile image
Robyncarmen in reply to

Yes Koll same once the Meds are sorted out & there right for you all is great 👍 it's a little difficult prior to getting it right. I changed 4 times but now it's good I'm on Digoxin & a blood thinner.

Cheers enjoying life now.

Rob x

I changed my Bisoprolol to night instead of am and find I'm less lethargic. May be coincidence but sticking with it

in reply to

My experience exactly.

Robyncarmen profile image
Robyncarmen in reply to

Frills that's so lovely to now you don't feel tired when you wake up I'm the same. Tabs at night also & can function in Day well.

It's great.

Cheers. Rob x

Mazza23 profile image
Mazza23

I also live in Perth I had a cryoblation at Charlie's last sept still on all melds but have not had a bout of af since March keeping fingerscrossed it has worked

Robyncarmen profile image
Robyncarmen in reply to Mazza23

WowMazza how lucky are you that excellent.

Cheers Rob x

clanmags profile image
clanmags

Can I just ask, Robyn...was your father taking anticoagulants for his AF? I absolutely hate taking them (apixaban) as I'm losing my (once) lovely hair, including my eyebrows...grrrrr!

I am seeing the Doc tomorrow to ask for a different anticoagulant just in case it stops the hair loss whilst I still have some on my head.

About 5 weeks ago, I was subscribed 2.5mg bisoprolol which reduced my heart rate to between 39 and 44 as-well-as making me feel like a zombie, even with taking it at night. At my last check up with the Cardiologist, she said I should reduce the dose if my heart rate stayed so low on the bisoprolol as it was already low (54) in sinus rhythm, leaving me 'nowhere to go' to improve the rate. I cut my bisoprolol tablets in half and have been taking 1.25mg for the past three weeks. For the first two weeks at 1.25mg, my heart rate was extremely erratic with many AF episodes and I'm sure this was as a result of playing around with the dose.....I'm guessing withdrawal. After that, my heart rate settled down to its usual 54 and I don't feel like a zombie any more. I wake up with the energy that I've always had and I love it. Also, I am experiencing very few noticeable AF episodes. I hated feeling half asleep all the time and I'm wondering if some folks are given a higher dose of Beta Blocker than they really need.

Robyncarmen profile image
Robyncarmen in reply to clanmags

Hey Clanmags my father was on a Beta blocker for years along with a blood thinner Warfarin, he had Af for 30 years god bless him

I'm on Xeralto it's a blood thinner with no side Affects, ask your Dr if you can have that. There's 3 new blood thinners on the market I cannot remember the other one but the second one is Pradaxa my brothers on that with no side affects also. I'm on Degoxin for slowing my heart ❤️ rate down now as I'm in Permanent Af but am coping with it it's easier these days. Sorry to hear about your Hair loss you poor lady. Swap Tablets get your dr to do it.

Let's hear how you go ok.

Cheers. Rob 😘

MS444 profile image
MS444

Robyn, is there a reason you didn't try an ablation?

Mike

Mazza23 profile image
Mazza23

I have been very lucky had no side effects from any meds take apixaban 5mg x 2 bisoprolol 10 mg candesartan plus 32mg imdur20mg potassium 1200mg frusemide 40mg rosuvastatin20mg have been on these for nearly 4years now and have had7 cvs I cryoblation

clanmags profile image
clanmags

Thanks for your reply, Robyn. I'll let you know how I get on. Here's hoping....

Maggie

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