AF + Sleep Apnoea=World of Problems - Atrial Fibrillati...

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AF + Sleep Apnoea=World of Problems

16 Replies

If any of you AF sufferers also have sleep apnoea, I urge you to learn as much as possible about the interface of the two--it ain't good. Research in Europe and the USA is showing that undiagnosed sleep apnoea can be the cause of AF. Even if it isn't the cause of your AF, it's worth being screened for it, as prolonged sleep apnoea causes permanent changes in the endothelial cells (which make up the blood vessels) leading to left atrial overload and stress. Apnoea also interferes with anti-AF drug treatment, can promote AF recurrence after a successful ablation and--to top it off--promotes increased risk of stroke.

As I suffer from both, I have had to do my own research, and have felt betrayed by the NHS as neither my cardiologist nor the medic at the sleep disorders clinic mentioned any of this to me. The apnoea was downplayed as a mere annoyance with no severe effects. And this is despite the fact that I informed both medics that my mother suffered from AF and and apnoea and died of a stroke. I suppose the less they tell us, the less they have to do...and the less they have to spend.

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16 Replies
CDreamer profile image
CDreamer

And my experience could not have been more different. My EP referred me for sleep test in 2914 for precisely this reason, I tested positive and have been on CPAP for since then and experienced an excellent service from NHS local physiology department.

It can be a lottery as to which doctor and where you live but I think the connection between AF and sleep apnea is a well known, but often not well communicated connection. I think it is beholden on all of us to be proactive with our treatment so good for you, we DO have to become our own experts. What annoys me is doctors who become dismissive if you want to be proactive and I have had my fair share of those which is why I don't see any cardiologist in my local hospital, except in an emergency of course.

I get quite involved in our local GP practice and one fact that emerged recently is that there are something like 60,000 known dysfunctions of the human body - so perhaps it is unfair of us to expect all doctors to know everything!

in reply toCDreamer

I agree that we cannot expect our medics to know everything. But when specialists choose not to communicate essential (and established) information to patients in their care, that's a different matter. The doc in the sleep disorders clinic told me simply to sleep on my side! It really is a postcode lottery.

And as regards the postcode lottery, our local hospital (Norwich--a teaching hospital) no longer carries out catheter ablations--we get to go to Bart's in London. An added expense and problem as one is not supposed to drive or lift things after the op.

CDreamer profile image
CDreamer in reply to

I agree it is frustrating, I had to travel to London from Devon for my procedures for the same reason but there are too few qualified people for demand and too few local NHS willing to spend on resources. I attended a local meeting, organised by our very hard working lead consultant in Elcectrophysiology, very interesting. He had had a moritorium out on doing ablations because they were not life threatening and he was questioned in the meeting as to why should this procedure be funded? He gave an excellent answer and managed to convince the majority using an economic argument of fewer emergency admissions from AF. It is often a political as well as a medical issue.

This doesn't excuse poor practice or omission of information - have you made a complaint?

I did make a complaint to the hospital, but it was brushed aside. Wasn't worth the time it took to write it up. PALS ain't our 'pal'.

CDreamer profile image
CDreamer in reply to

Not all services are equal, unfortunately.

JNL52, My pacemaker has full Apnoea capture recording facilities. When it is interrogated, I ask for a copy of the read out and show my Respiratory/Apnoea Consultant. She in turn, makes all her own examinations ,tests and scans. Good to see my own graphs, measurements and details.

Cristatus profile image
Cristatus

I have had both AF and SA, SA was diagnosed first in 2010 no mention of AF until I found myself going to Aand E in 2012 and stayed a week as a result of AF. Both conditions are treated at Papworth. Neither department showed much interest in the other condition. My cardiologist was aware of the link and of course the common link with obesity. It is clear lots of people go undiagnosed with SA. So I agree AF sufferers should be aware. You can buy a pulse oximetee for less than £100 on Amazon and test yourself one night. Make sure you get one that records and allows a download to a PC. Certainly if you have any symtins that suggest SA I would do this. Symtons such as: Daytime drowsiness or habit of daytime naps, neck greater than 16" for men and less for women but can't remember if it is 14 or 15 " or not. Waking multiple times for a pee. Feeling tired after thinking you have slept. Snoring. Being obese or overweight.

In my case when dismissed for SA my neck was 18" I was obese and had several of the other symptoms. I lost several stone and with my neck down to 16" the SA is cured. Now not everyone with SA is overweight but a high proportion are.

With AF I have had 3 cardio versions and 2 ablations but still need medication to keep it under control but being cured of SA is a relief.

Another negative with SA is it makes losing weight harder. Research has shown lack of sleep leads to hormone production to slow metabolism and increase appetite to deal with sleep deprivation.

Now my diagnosis was typical I was aware I was waking 3 or 4 times a night but the test showed I wAs stopping breathing 30 to 40 times an hour yes that is correct not a night an hour. So this means you get no restorative sleep at all before you stop breathing, heart rate increases to deal with lack of oxygen until the brain decides it needs to react by waking you sufficiently so you start breathing, this happens without you realising continuously during the night. You can see the interference with your your heart rate and why this can be linked to AF.

When I say breathing stops this occurs generally when the throat collapses shut as the muscles relax whilst asleep. This is the link to being overweight if you have fat around you neck then the collapse of the airway is more likely.

I am not a Dr of course this is just my knowledge and experience but as a DIY sleep test is cheap, easy and non invasive I would certainly recommend it for any AF sufferer. The benefit of getting SA treated or cured is at least as significant fir how well I feel aa with treatment for AF.

Finally the treatment is effective immediately so the first night I used the CPAP machine and got s good nights sleep I felt 10 years younger and realised I probably had SA for Over 10 years without realising.

clemothesweep profile image
clemothesweep in reply toCristatus

Thank you for this, I am 25 years AF and 5 ablations,,,and just setting off down the SA road, with a sleep clinic appointment shortly. I was feeling a bit cast aside as they say no more ablations for me!

Mazza23 profile image
Mazza23

I have just had a sleep test and have been told I have severe sleep apnoea have to have a 4week trial of the apparatus to see if it helps . They did tell me all the ramifications and that my EP would not be happy about doing an ablation

Cristatus profile image
Cristatus in reply toMazza23

Good luck with the trial I would say if you can tolerate the CPAP it is very unlikely not to work. Getting the right face or nasal mask is critical be prepared to try several and keep trying. once you drop off to sleep the first time with CPAP the feeling the day after the first nights good sleep is amazing. Also suggest you make sure you get a humidifier unit as otherwise most people find it makes your mouth and throat too dry for comfort. They do not tend to be given out automatically.

Good luck and let us know how you get on.

CDreamer profile image
CDreamer in reply toMazza23

Mazza I was referred by my EP - who corresponds with my pulmonologist - and have had excellent results using CPAP.

I have used CPAP since Nov 2014 and it has worked brilliantly for me. I now sleep 6-8 hours a night without waking and awake feeling refreshed. The equipment does take some getting used to and I took about 8 weeks before I could tolerate it for the whole night - but I was warned about this in the class I took when given the equipment. I went through about 3 masks before I found the one that suited me and agree a humidifier is essential, as is a chin strap to keep your mouth closed unless you wear a full face mask which I couldn't get on with.

I was given a ResMed machine, you can look them up on line and I have found they are also very helpful, I met a rep at a seminar and she answered several questions for me.

Also sleep in a warm room - I always used to have the window open, even when freezing outside, and was told this can also prevent restful sleep and bedroom should be at least 18C. With CPAP & humidifier it is even more important if you don't want to wake up with water dripping on you!

Once your SA is under control then your ablation is much more likely to be successful. If you are overweight, then losing a few pounds will also make a massive difference.

Good luck.

Mazza23 profile image
Mazza23

Thanks for that will make sure I ask

Mazza23 profile image
Mazza23

Fingers crossed it works my app is on may25th

I live in the USA and was diagnosed in dec 2015 by cardiologist. Put on meds, no mention of lifestyle changes or sleep apnea. Finally in desperation I sought a second opinion and saw an EP last week, he immediately is scheduling a sleep apnea study, changed my meds, talked to me at great length about diet, exercise, wt loss. I am so glad I felt convicted to see someone else.

JNL52

You’re absolutely correct.

clemothesweep profile image
clemothesweep

Thats interesting, I am just setting off down this path, how are things now?

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