How do you cope with your atrial fibrillation

[Norm]

I have had permanent Afib for a few years but peculiarly I have only noticed the random heart beats, very pronounced of a night only since my heart operation earlier this year. Before that although the Afib was there I did not even know what it was or even feel it. Even now day time it generally goes unnoticed.

This has had a profound effect on my sleeping or should I say lack of sleeping. The GP gave me sleeping pills, things like Zopiclone and Temazepam and even some Diazepam. All these worked at one time or another, take one night and have a good sleep. Take again the following night and it did not work. The problems with the hang overs the following day did not help.

Long story short I have managed to get the GP to stop these and I am now well off them for some time.

So what do I do, I try herbals, things like Valerian and hops, Chamomille, Magnesium, Lemon Balm , Passion Flower in various combinations available commercially. Some work, some don’t, some work one day then not the next. I even got the GP to prescribe me Melatonin. Again this appears to work some times and others not.

I have even tried Somulin and similar from USA that contain Melatonin, Valerian root, Hops, Lemon Balm and other ingredients all in one tablet. Again they work some times and other times not at all.

I try relaxation and have been waiting CBT with talking therapies since May that might help.

That’s me.

Question: How do others with Afib, 24/7/365 cope with getting to and staying asleep.

Come to that how do others cope with any similar situation and getting good sleep.

[BobD Volunteer]

Norm I think it is about learning to live with what you are. I have never had more than about 6 hours a night for the last fifty odd years and for 20 of those four or five was the norm. I learned to cat nap during the day (20 mins at lunchtime 10 mins at a time on the train. often standing up) . Then I had prostate cancer five years ago and post op had problems with frequency and incontinence so even today four hours uninterrupted is good going. I learned that if I lay awake for more than 20 mins then I must get up and do something to break the chain, then return for another few hours. My wife is a carer who starts work very early so from 5.30 am there can be interruptions although occasionally I sleep through to 7 am!

I am sure others will have their methods but I do know a lot of it all is in our brains and really only we can sort it out. Pills never worked for me.

[Pacific]

Taking pills for insomnia can be a slippery slope.

I resolved my insomnia by getting more physical exercise; doubling the lengths of my walks.

Yoga is an excellent form of relaxation. There are countless You Tubes and apps available that teach the benefits of deep breathing, which can train an over anxious mind to switch off.

I even do jazz ballet around the living room, much to the amusement of our 2 cats!

. Or slow stretching to serene music; whatever.

If you haven't fallen asleep after 20 minutes then make yourself a cup of fruit or caffeine free tea. It breaks the cycle of you lying in bed fretting, rather than the tea itself. Don't look at your clock!

Plan events in advance so that you have lots of nice things to look forward to.

I hope you find a good solution that works for you.

[Rellim296]

I don't cope well on the sleep front, Norm, and would like far more than I get. I was up at three this morning and went back to bed at four, stayed awake for an hour, snoozed on and off for a short time and then got up at about 6.30. This is a normal night. Sometimes sleep is no problem. Yesterday I nodded off for twenty minutes in the middle of the afternoon and as it happens, to my embarrassment, in the middle of the conversation as well. We were at a friend's house and she had other guests.

AF doesn't have much influence. It can keep me awake but I can also wake with it and then go back to sleep.

[jeanjeannie50 in reply to Rellim296]

Oh, how embarrassing for you Rellim! I must confess it made me laugh picturing you asleep with people around you all chatting. I hope you didn't snore!

I find I'm waking really early, this morning it was about 4am and that was it I was then awake for the day. Just trying to snooze a couple of hours ago this afternoon and of course the phone rings just as I'm dropping off! I gave up trying after that.

[Rellim296 in reply to jeanjeannie50]

Yes, that's what I can do too. Sometimes I can get back to sleep again but my slumbers can end at 3 or 4 or 5. Then the fatal mistake is to nod off in the evening in front of the telly.

I don't snore much, I am told. I have done worse than yesterday's effort. I once got up very early, made lunch and took it with me for festivities prior to an afternoon concert by a pianist at the same friend's home. The tinkling music and the 5am start got to me and in the video, the music stops and everyone except me applauds.

I use a lavender pillow spray at night and drink a night-time tea of some kind.

[PeterWh in reply to jeanjeannie50]

I woke at 4.30 this morning. Lay awake for a bit. Played a few relaxing games on the phone (so as not up get the mind too active). Then read one of the free newspapers on the phone and then got heavy eyed and went back to sleep at about 5.30 and then woke up again at 7.00. That extra 1.5 hours makes a difference. When I go for an afternoon nap the phone gets switched off so I don't get disturbed.

[jeanjeannie50 in reply to PeterWh]

Hi Peter - Usually when I have an afternoon nap all the phones in my house are turned off. Sometimes I can get back to sleep too and I agree that the extra 1.5 hours makes all the difference. Today, I've once again been awake from about 4.30. I'm off out for the day with a friend and just hope I'm not going to be a tired drag. Oh yes, I did a long walk yesterday, but wore totally unsuitable sandals! Now my foot and leg hurt, so I'll have to try and bite my tongue and not mention that either.

[PeterWh in reply to jeanjeannie50]

If it's not one thing then it's another!!!

Hope you enjoy your day out.

[Wightbaby in reply to jeanjeannie50]

That always used to happen to me......click the phone off next time!!!

[Hidden]

Hiya Norm,

Interesting post and I have to say I can easily identify with what all the AF'ers have said. I can identify with a little of each, so there is a common theme. I have paroxysmal AF and nowadays it doesn't bother me., my last recorded AF event being in April 2015 - (but I'd never claim to be cured, no way!). My Consultant has also described my AF as asymptomatic, that is I can have an event but not know it.

So, a bit of my lifestyle. I'm 71 and drive a mini bus, shuttle bus service between an airport and a railway station. I do a regular 30 hrs a week and sometimes for sickness or annual leave cover I do an additional 10 hrs. So I hold a PCV licence entitlement and have to pass a DVLA medical each year to retain my PCV entitlement. No sweat. The driving bit is a 16 mile round trip (45 minutes) and also involves handling passengers baggage (not much of it less than 15 kgs). I have to lift such baggage from road level to around shoulder height (at a maximum) .... so I keep pretty fit. Especially since I had a partial knee replacement in my right knee last November. I also have to interrogate the company passenger booking system and organise the ground transport requirements for the next day. I have driven buses since 1992 but I've really only been aware of the sleep issues for about the last 8 years ( I was diagnosed with pAF in Jan 2010). I'm not aware that my pAF is actually waking me up. So, all in all its a pretty mentally and physically active environment I work in.

I sleep best when I've been at work as by the time I get home I'm a bit weary. Try and get to bed around 9.30 pm and read for at least 30 minutes. When I'm on shift the sleep issues are less and mostly I can sleep for 7 hours straight. No signs of sleepiness during the day when I'm working. Its just full on all day, particularly during the tourist season.

When I'm not working I can't get through the day without a 'napette' in the afternoon, after lunch, which can be between 1 and 2 hours. At night I drop off to sleep in micro seconds, no problem. BUT, I'm awake again anytime (like now) between 2 am and 3.30am. Its no good fighting it - I just get up, check my emails, make tea, have a Chocolate Bourbon Biscuit or two, and even have a deep and meaningful conversation with our aging cat. Back to bed, read for a bit and sleep again for up to another 4 hours.

I'd never associated sleep issues with AF until recently reading some others posts on here. I'd always written my sleep issues off to all these years working shift work, sometimes as many as 3 different shift patterns a week in years gone by. BUT, now I'm not sure anymore, maybe its the aging process or maybe IT ACTUALLY IS A SPIN OFF from AF.

May the force be with you.

John

[BobD Volunteer in reply to Hidden]

John. Actually I don't think it is anything to do with AF but more about age. I know lots of us old gits who wake at 3 or 4 am every night. I think it is the brain checking in to make sure we are still alive!

Many of us have had AF for a long time and we forget that we are that much older now and EVERYTHING seems to get blamed on AF

Bob

[Hidden]

That's great Bob ... love that bit about the brain checking in Ha! Ha! Ha! I think you are probably about right about 'old git sleep syndrome' Ha! Ha! Our aging cat loves it - she takes advantage of me and gets an extra feed snuck in !

John