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[Babyr1996]

Hi all I’m new to this forum, so thought I would say a little about myself, in 2006 I was fitted with a duel chamber pacemaker as I had neurocardiogenic syncope, my HR and BP very very low, diagnosed with PAF. Nothing really settled, but did stop me from fainting!!! but then I had a new machine fitted October 2016 it’s all singing all dancing model, and it finally was able to record all my hearts activity, and now I have AFL AF and SVT, help, yes not nice, I’ve been so used to being so low that to suddenly turn on its head and be the other end of the scale was quite a shock to me. I’m taking mIdodrine, ivabradine, and only a month ago I saw an EP who now has me on the list for Ablation. Of which I had appointment for before EP could conduct all his prelimary tests,msomhad to cancel, as he needs to know where my triggers are.

I have a Kardia device, which is really good, but no good as if my HR goes higher than 100bmp it says unclassified, or unreadable. Apart from that it’s great to have this device. My Apple Watch is constantly recording HR so that’s a great help too. I have managed this week to record 2 AF episodes going with a low HR of around 51 bmp.

Trouble is I just feel so exhausted all the time, when I’ve gone fast over 100 bmp my chest hurts well it aches I suppose is better waybof putting it. I’ve now been put on Bisoprolol and now I’m freezing cold, my nose is running and my head feels likes it’s got ice running through the veins, not nice, I’m hoping this settles with time, as I can’t really cope with this long term.

I don’t have any particular questions to ask at this stage, but just wanted to give a brief history of my condition. And if anyone can relate would be great to hear from you, and of course always open to any advice. Thank you

[rosyG]

sorry to hear you have a lot to deal with and welcome to the forum!!

My Kardia records hr of over 200 ppm so you need to talk to them about it and get replacement if need be- I don't now if having the pacemaker affects the Kardia- others on here will advise.

Ablation can deal with all the things you mention but you are right to pick up on proper preparation for it- again others who have had this done will advise.

Take care and ask lots of questions- there is always someone on here who has had similar experience

[Babyr1996 in reply to rosyG]

Hi rosyG thank you for your input x

[Hidden]

Kardia with PM? Makers say no because not been tested. They may just be referring to the reporting algorithm.

A rate of 51with PM fitted sounds low.

I take Sotalol and cope with the cold by using thermals for 8 months of the year. My wife says she makes a good blackbody radiator!

The anxiolytic effect of the betablocker is a plus for me.

[Babyr1996 in reply to Hidden]

Hi I have the new biotronic closed loop simulator fitted now and it’s adjusting HR constantly whereas my old PM was set to if I drop below 50bpm it kicked in at 90bmp but this one doesn’t do that. I’ve gone as low as 39 and as high as 246bpm I am a one in a million patient and very complicated lady I’m afraid

Im having a particularly bad day today I’ve been in and out of AF all day

[Hidden]

Hi Babyr1996,

Bisoprolol - now one of my best mates ............ but it wasn't always like that !

I'm on 5 mg a day (taken as 1 x 5 mg tablet in one hit) and have been since diagnosed with AF in Jan 2010. I was originally prescribed it to be taken in the morning at breakfast, but I developed massive nose bleeds, for no reason and at any time. Saw my GP who got out her book of 'Magic potions and brews' and said take it at night. I have had no problems ever since - except the coldness you describe, fingers, hands, toes and feet. Also occasional low heart rate, down as low as 46 bpm. Normally though around 65 bpm.

To deal with the coldness I have been known to go to bed with gloves on, socks, an electric blanket and a hot water bottle. I am so cold I feel I am visiting a very dark place. Over time it has improved and now I recognise the signs, go to bed with a hot water bottle and a mug of sweet coffee. A combination of heat and caffeine seems to give my heart a kick start, I usually fall asleep for a few hours and wake up and all is normal again. Now at nearly 8 years all this has got less and less with the passing of time.

John

[Babyr1996 in reply to Hidden]

Awe John thank you for input I may ask if I can take mine at night I’m only on 1.25mg at breakfast I come out it an horrible rash on my face too which cardiologist says it was a reaction can’t wait to have ablation hopefully sort a few things out!! I’m well wrapped up in bed with hottie warmer thingy that’s heated in microwave I find if I put that around my neck it really helps

I’m in fluffy pj’s fluffy socks and wearing loads of layers haha

[Hidden in reply to Babyr1996]

Take my once a day Bisoprolol at night find it helps me feel less lethargic during the day. Take 2.5 mg