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AF Association
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Bedtimes have become a permanent AF Zone and my doctors aren't willing to help

Hi All my friends,

Well it's been around 9 weeks since my rf ablation and gradually my AF has started again,1-2 hours after going to bed,I'm abruptly awoken shaking because my hearts going so fast and thumps and missed beats and I've begged my doctors to try and get me through this either by having an earlier check up or by using the drugs they've used on me before at a+esa, basically a combination of drugs which kick your heart back into nsr,but they're unwilling to do so,

I'm not what I'd call a wuss and have a high pain threshold but this is worse than before.

Has anyone else had these issues this far into post ablation?

Any feedback would greatly appreciate it

Thanks

Matt

35 Replies
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So sorry to hear this. I would be looking for another doctor to consult with..

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Hi Victoria,

You're not wrong

I've already spoken to the GMC who are basically saying that it's up to my doctor how he deals with my health issues

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I think it important that you understand that GPs are not allowed to prescribe anti- arrhythmic drugs without consultant level instructions so please don;'t blame your GP. You need to lean on people to get your cardiologist appointment brought forward.

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Hi Bob

I agree to a certain point but when there's something that you know is wrong and the doctor is still telling me to wait another 3 weeks,

I don't think that's right

Thanks for the comment

Cheers

Matt

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Hi Matt, it sounds as though you are at the start of your AF journey as a period of three weeks is nothing to wait to see a consultant.

A lot of us on this forum have been where you are with our hearts feeling as though they're trying to get out of our chests. I can remember thinking I would surely die. I soon discovered that you don't die, I've never heard of anyone dying from AF and I think we may have more of a chance of getting knocked down by a bus.

It really is a horrible and frightening experience, but eventually you come to just accept it. It was 7 months after my first unsuccessful ablation before I went back to see my EP. I believe your ablation was a few months ago, you will be surprised how quickly those 3 weeks will fly by.

Wishing you well again.

Jean

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Hi Jean

I've had the af for just over a year but have never been in af for 8 hrs at a time and it just concerns me that it's harming my immune system due to lack of sleep.

7 months is a terribly long time to wait,and I thought my 12 week follow up was long.

I think it concerns me more because I'm a personal trainer and I might be getting a bit of anxiety about getting back to it.

Thanks so much for the advice

Matt

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I think we all get a little anxious at times, it's a normal reaction when you have AF. When my AF kicks off it's with me for days, even months until I have a cardioversion, or a few times after a month or so it's reverted on its own. Makes me feel quite disabled, tired and breathless. Hate it! Wish you well Matt.

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You definitely need good medical input Matt. I would be seriously looking at consulting another EP in fact I did so about three years ago and found a fabulous one albeit I have to travel a long way to see him but it's so worth it.

Have you been to a and e since, might be worth a try, please don't continue like this try someone new and quickly. Sorry you are going through this. You have one heart and you and it deserve the best at all times.

Best wishes .

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Hi meadfoot,

I think I do as far as my gp is concerned because he's not listening to anything I'm saying and seems more concerned with minor injuries that I've accumulated over years of strength training,which I can't really fault him for but like you said,We only have one heart.

Thanks for the advice

Regards

Matt

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Many or even most GP's know little about AF. Worse still, some like mine try to treat it themselves when they are not sufficiently qualified. In my case, my GP did not refer me,and as a result, I reached persistent AF from initially Atrial Flutter before he finally took that step. Also they can't prescribe anti-arrthymic drugs as they are not trained to do so. So, it's a good thing that your GP is not listening so that you will go to the specialist -- the EP -- as you have by requesting an earlier check-up, but they wouldn't . I guess the other route is to get a private consultation.

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I am not so sure it is a matter of training. Some of them will have worked in hospitals in Cardiology. My guess it is lack of equipment plus the fact that you often need to be monitored in hospital, with good emergency equipment available + people trained to use it. Plus, are they up to date in their data interpretation skills? Reading an ECG for instance, even the patient can learn the basics. it is the rare but subtle stuff that the experts, with long practice, can do.

In other countries they can and do take the risk and send the patient home. A colleague of mine was twice in intensive care because of that + the problem of drug interactions that were not even considered.

So, given that AF is not life threatening but the arrhythmics (rarely) can be, it is not surprising the GP refuses.

Last time I saw a British consultant, I asked her to write a protocol letter specifying Flecainide, so as to head off any problems with a GP.

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Try sleeping raised up a bit? Have you been tested for sleep apnoea? Certainly sounds as though the AF is triggered by you going into deep sleep?

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I would just go to A and E if you are suffering a lot!!

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Thanks so much for your help and advice

I'm just going to try some different technices to try and ease the af until my consultants appointment and try to get another procedure that hopefully will burn away the the last few points that are receiving the signals to pump.

Good health and wishes to all

Thanks again

Matt

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Good luck Matt i hope things improve for you. Cheers Roy

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Hi Roy

Cheers mate

Much appreciated

All the best

Matt

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Have you read Dr John Mandrola's book 'The Haywire Heart'? He is an EP and cyclist, with some personal experience of AF. I think it may help you to understand your condition better from the training point of view, and so the possible ways forward . . .

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Hi Polski

I haven't actually heard of that book but I'll definitely have a look,Thanks.

Im relatively new at this but the way it was explained to me was very simply put,electric impulse's are telling my heart to pump when it doesn't need to and my ablation would scar the places where the heart receives the signal thereby stopping the af hopefully.

Cheers

Matt

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I am 9 weeks post ablation and really do not feel any better i have 3 months to see my specialist and i too have had trouble at bed time...

I cut out the coffee after 5pm and am limited in what i can do but i ride an exercise bike leisurely a couple of hours before bedtime so at least i am tired...

I am consistently short of breath so its hard work getting about..

By my GP knew nothing about AF i got my knowledge from researching the net i still am way off but its a start...

Anyway all the best Matt i hope things get better...

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Hi Stevie

I dropped virtually everything which wasn't a lot bar caffeine,I was a heavy coffee drinker,

I would drop the exercise before bed though Stevie,

It may tire you out but it's raising your heart rate just before bed.

It's really hard to find a balance for me because I'm still relatively young and exercise has been my life for years and now when I try to train my creatine levels go sky high like I've been doing a strong man contest and the af hits me,so I've had to give my body more time to heal and lay off weights.

Hopefully at some point I'll be able to get back to some cardio soon though

All the best and I hope things get better for you Stevie

Cheers

Matt

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Phone the consultants secretary and explain how bad it is and ask for another appointment

My consultant says it's up to me whether I take flecianide every day or pill in pocket, Maybe that's the flexibility you need.

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Thanks Daybird

That's the drug that my consultant was going to prescribe me,

I will be calling the arythmia nurse on Monday.

Cheers for helping me remember the name

All the best

Matt

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Had 3 ablations did not hold now in permanent afib low rate with meds. Sorry you are having such a problem now. Hope all gets figured out.

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Hi Lms0006

My god and I thought it was bad enough for me

I'm so sorry mate and hope that you get some relief in the near future

All my best

Matt

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Thanks Matt...just coping a day at at a time. Just try to keep busy

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Maybe gp to ER and get converted.

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Thanks

I will be trying my best on Monday morning

Maft

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Suggest you get your bloods tested - particularly magnesium and potassium levels. Check your cholesterol and sugar levels and chuck the booze and the coffee in the bin for a while. Unfortunately the cause of this caper is not clearly understood - but more people seem to be getting It.

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Until you get help...maybe try sleeping in a really comfy chair? I've recently bought a cheap but very useful recliner. I can sleep ok with the leg part raised to horizontal, and the back part just reclined slightly. So if I'm in AF I forget about going to bed (get more breathless if I lie down) and I just get all cosy with a duvet and pillow, and either put the TV or radio on low. It keeps me sane through those sleepless or semi sleepless nights. Maybe this position would help prevent your heart from misbehaving?

Good luck :o)

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Hi Matt. It's worth avoiding sleeping on your right side to see whether that helps. A lot of us have af triggered by this, and it's a well known problem. My af was always kicked off at night and changing my sleeping position was a massive help.

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Sorry Just woke up! Avoid sleeping on your LEFT side... It's sleeping on your right that ca be the problem...

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I have found that sleeping on my left side brings on afib during the night. My doctor says no way, but it happens every time, especially if my left arm is pressed against my side. Just thought this might help.

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Hi Arline,

Since I've had af,I haven't been able to lay on my left hand side,it feels like you can't breathe and the af kicks in,

I really sympathasise with you and thanks for the comment

All the best

Matt

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I haven't had surgery byt my AF is also a bedtime thing. Finally worked out with consultant that it's because my resting pulse is lowish at 52 so when I go to sleep it drops more and AF overcomes the normal sinus rhythm. Now I take one Flecainide at 10.30 and it doesn't happen. Or if I have a drink on a rare social occasion, that raises the pulse and again no AF. Revelation to me! Hope you find your answer soon.

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In what way worse than before? How often did you have AF before ablation? duration of attacks then? you still take bisoprolol? how is your resting heart rate before AF kicks in?

I had a lot of trouble after ablation, which was not successful in my case, but at least reverted to not much worse than before after a cardioversion.

Are you sure it is AF you get a night now? Does it feel like before? irregular? or regular and thumping and extra beats?

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