AF and sleep deprivation

Most nights I am awoken by breathing difficulties - usually in a panic because I have stopped breathing and have to sit up and force myself to inhale and exhale.

I have spoken to my GP and more recently a cardiology registrar, both of whom have left me bewildered by their 'dont know' responses. The registrar listened to my chest and also the recent xray, and told me there wasnt any fluid in the lungs and nor can he here any 'rattle'. I asked whether something was building up in my airways each night which would give the telltale rattle and eventual blockage. He said he didnt know!

This has made me research online to try to understand what is going on.

Yes, mucus can build up in the airways at night. The online advice to clear it is to take sips of cold water. It works! However, after weeks and months of sleep deprivation, I would like a better result other than taking sips of water every ten to twenty minutes of the night.

I had previously tried sleeping upright, but found that when I did doze off, I slipped down the pillows or rolled sideways to get comfy.

Last night I decided, after getting comfy in the corner of my L shape settee to watch a film, and falling asleep for most of it(happens a lot these days!) that I would get sheet and duvet and sleep upright there.

IT WORKED!!!!! I slept! The corner, plus arranged cushions of support, and I slept all night without 'rattle' or breathing difficulties awakening me.

You wont believe how good I feel.

However, I will still push the issue with my GP and cardiology people.

35 Replies

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  • I wonder if sleep apnoea has been mentioned? I'm sure you'll get plenty of responses on this as it sounds similar to what has been raised in the past.

  • Thanks Yatsura - yes I have even suggested to my GP that this may be the problem, but my GP didnt take this suggestion seriously so I got no further.

    Lack of sleep, plus the AF, and feeling absolutely exhausted has delayed my aim to see my GP, armed with a mass of questions and renewed vigour in pushing for checks to be done. But the sleep has given me a little energy today to call now.

  • Change your GP! Sleep apnoea is the obvious conclusion from your description and you need to have a sleep study done as soon as possible, OK you may not want that diagnosis as it could affect your right to drive in the short term but it is likely. Since SA can also be a contributing factor to AF you need this sorted soon.

  • It really sounds like sleep apnea to me - for which there is a solution. Sleep apnea is when you stop breathing in your sleep resulting in sleep deprivation and I cannot believe neither your GP nor your cardiologist has not referred you for a sleep test?

    Sleep apnea is also the main underlying cause of AFib. It also means you don't clear mucus from you ur lungs leaving you open to chest infections. I have slight to moderate sleep apnea, stopping breathing approximately 11 times per hour. Using a CPAP machine at night is the one single thing that has improved my QOL in the last 3 years and no more mucus, no more chest infections.

    Please go back to your GP and ask for a sleep test.

  • Thanks CDreamer - the sleep and responses have given me the strength to call today!

    Amazing how sleep deprivation takes everything out of you.

  • Absolutely and why it makes SUCH an amazing difference to your QOL when you have treatment.

  • OK.....I have just called my GP surgery to request a 'call-back'. Doctor has just called me.

    I said that as with previous conversations, my breathing was still badly affecting my sleep, so could I request a sleep test.

    He immediately referred to the recent letter from cardiology registrar stating that the xray showed no signs of any fluid and that everything looks good! He then proceeded to state that he was concerned that my 'anxiety' may be causing the problem!

    Its difficult to describe oneself to anyone on this site who have not met you, but 'anxiety' is not one of my problems. And one would hope that the doctor would understand this by now, although I have only been with this GP for less than a year.

    Everything is said with an even tone, even when I have said that I have a phobia of needles, operations and hospitals. Perhaps this is why I feel I am not believed.....

    From what he was saying I asked him whether he thought my problems were psychosomatic.....he hurriedly said 'No..no..but I think anxiety may be causing some problems'.

    I explained that I am not anxious, just in need of finding out why I am having breathing problems and why I feel so ill and exhausted. I suggested that it may be some of my medication, and could he review this.......

    ...Do I have faith in my GP..........?

  • Mmmm... what he should do is ask you in surgery to answer the sleep apnea questionnaire - if you score more than 15 (I think) it is an automatic referral to physiology for sleep test. Just keep on and on and on ........as the old advert used to go.

  • Hi Ktomoph_ , it sounds like you need to see a different GP, if at all possible. I don't have sleep apnoea but from reading posts about it on here over the years your symptoms tally with what other people have said they've been diagnosed with. To be brushed aside with such little consideration and insight, especially as you have AF, is not right and needs to be challenged, which is hard when you feel so rough from lots of broken nights sleep and may be too difficult to do on your own. Are you in part of a larger practice where you can ask to see a different GP or is he the only one?

    For more information on SA perhaps this link might be useful: sleep-apnoea-trust.org/slee...

    I hope you get the help you need and wish you all the best.

  • Thanks Mrsg46 - I realise that I do need to change GP, as I actually put-off making appointments with him. I only moved to this area just under a year ago, and having had such a wonderful GP before, its a bit disheartening to have found the complete opposite.

    So many broken nights sleep can and does affect the way we are able deal with things.

    I am seeing him tomorrow at the surgery as he wants to do tests....? not sure what, but plan to sleep on settee again tonight so that I am at least alert. If I do not gain any confidence from what he does or says, I will look into how I go about seeing someone else.

    As much as it helped, I do not want to have to sleep on the settee for goodness knows how long!

    And I really would like a GP who is 'fighting in my corner'.

    Thankyou.

  • It's what you deserve..... GP's are the gate-keepers to access to health services.

  • I think there is a link between people with Sleep Apnoea and developing AF. I had Sleep Apnoea and then after I had started CPAP treatment, I developed Paroxsismal AF.

    I would press again for a sleep study, my GP reacted when my partner came with me and described what happened when I was asleep. I was sent to the Sleep Clinic and had an appointment and then a sleep study very quickly after.

    I hope you get sorted.

    Best wishes

  • I sympathise with you in trying to deal with this - certainly I would see another GP.

    If you haven't already visited this page, you might find the SA diagnostic tools useful.

    sleepeducation.org/essentia...

  • Before my ablation procedures In search of triggers for AF and armed with the info from my wife, 'i think you may have SA as you snore deeply, struggle for breath and snort during the night'. I mentioned this to GP who said, 'you haven't got SA, your brain will wake you anyway!' This GP has been good for me previously. Thanks to his referral they discovered my Prostrate cancer very early. Mentioned to my EP who said SA needs investigating. So GP referred me. Sleep test discovered mild SA, 8 times a night with maximum time without a breath 56 seconds! Flabbergasted at this but because I am of slight build, skinny even, with a BMI of 20, 5'6'' and no other health conditions (other than AF which I did think was pretty important) I am not due further SA treatment. this was 12 months ago and since 2nd procedure I am AF free. Last week I started to record myself during sleep to see if I am still having SA episodes as I am due to see EP in June. None so far. For the last 6 months I have made efforts to sleep on my right side, even purchased a pillow that comes down my back. This helps, not 100% but helps to keep me on my side

    So yes it sounds like you need sleep study as others have stated there is a link with AF. Can you see another GP at the surgery?

  • Sounds like you've had a lot to deal with! But pleased to hear you are on the mend.

    Thanks for your concern. Will see what GP says/does today, particularly as I did not get much sleep at all last night due to breathing.

  • I had a much lighter version than your problem sounds but I have " solved" mine by putting a light smear of Vicks at the bottom of my nose each night

  • yes, I too have tried this in the hope that it may help. But although I do like the smell, it sadly has not resolved the issue.

  • I occasionally wake gasping for breath but I'm never sure whether it's a nightmare or sleep apnoea... Good for you getting it investigated, and do press on. Some doctors like an easy life...

  • Thanks Eatsalottie. I think perhaps you should think about getting it checked out. As others have said, it does trigger Afib. And I sometimes think that maybe my GP is trying to save money by not sending me for tests.....

  • Yes, we get that a lot in Wales too...

  • Hi I have the same problem as you....I had a sleep apnea test overnight and went to see specialist yesterday and Ive got sleep apnea and need to sleep with a cpap machine at night..like Bob said ...change your doctor they should listen to you

  • Hi....how long did it take from referral to get the sleep test done?

  • 3 weeks then another 2 weeks to see the specialist

  • britishsnoring.co.uk/sleep_... here is the initial test you can take to your Dr

  • I used to have the 'stopped breathing' night time panics, had to get out of bed, I then started taking Sertraline which I requested from my GP to try to help persistant dizzyness. I had read an article about a guy with the same symptoms as me. The drug helps the dizzy spells, stopped the night time issue and made me feel generally better, in my case it seems anxiety was the problem.

  • Have you had a sleep lab test for sleep apnea ?

  • Well, have just returned from GP appointment where I had gone resolute that I would be referred for a sleep apnea test!

    I am proud to say that despite my GP's constant twists and turns to avoid the referral, I stuck with it, including finally asking why he appeared to not want me to have the test, and was this to do with the cost? I also reminded him that it has now been nearly a year of me asking whether the sleep deprivation was to do with sleep apnea.

    Thankyou for telling me about the test for referral - which I asked for - and thankyou for giving me the moral support to do this. Whether I do actually get the lab test....I will let you know.

    This morning has also brought with it a phonecall from the cardiology team to say that they have booked me in for the second stage of the hybrid ablation in 2 weeks! Of course the cancellation rate is well known but, fingers crossed the 'fix-all' may actually be in sight!

  • There are two types of sleep apnoea: obstructive sleep apnoea and central sleep apnoea.

    OSA is what occurs when the back of your throat closes and suffocates you, as in snoring, and can be treated with a CPAP machine. CSA is entirely different, as I understand it CSA is what happens when your autonomic nervous system 'forgets' to take over your breathing whilst you're asleep, and is not amenable to treatment with CPAP.

    You don't mention which antiarrhythmics you are on, but if you have a look here you will see that calcium channel blockers (eg: Diltiazem) have been found to cause CSA:

    medscape.com/viewarticle/40...

    "Calcium antagonists, both short-and long-acting, had the strongest association with the central apnoea-hypopnoea index of all the drugs studied"

    I'm on Diltiazen, and I have had occasions when I can feel that my breathing is about to stop just as I'm on the brink of falling asleep, and I also woke gasping for breath once. I don't know how long my breathing had stopped for, but I must have been about as close to suffocating as it's possible to get. My head was spinning, and my lips tingling for about two hours afterwards.

  • I fell asleep sitting fairly upright, whilst watching a film, in the corner of my settee again yesterday evening. I read your reply at 11pm last night, just as I was shutting down everything before going to (hoping upon hopes!!) undisturbed sleep. But I was too exhausted to reply then.

    It was comforting - to recognise that someone has put into words exactly what happens AND that there may be an explanation as to why it happens - Diltiazen! Yes I am on Diltiazen 60mg, 3 times a day. And as from today, my GP wants me to take Diltiazen 60mg, 2 in the morning and 2 in the evening.

    This does bother me because as you say, the contra indications state that you should not take Diltiazen if you have breathing problems/difficulties. As the breathing difficulties have been the major issue since diagnosis of Afib, including being ambulanced to hospital and breathing reaction to medication, I cannot understand how my GP has decided that this is the way forward.

    Part of my GP's 'argument' against being referred for sleep apnea test was that what I was describing was not sleep apnea. As I was describing what happens - exactly as you have described above - he insisted that patients with sleep apnea DO NOT wake up during an episode. I finally asked him , OK if its not sleep apnea, what is it? He said 'heart failure'.

    My GP also believes that the sleep test people will turn down the referral because I have Afib.

    So, thankyou Ectopic1 for your reply. I can now say with certainty that I am not imagining it.

    Maybe I will take a copy of this post to show my GP.............

  • He says you have failure, but wants to increase your dose of Diltiazem?

    From the patient information leaflet:

    "Do not take Adizem-XL capsules.....if you have heart failure....."

  • Whenever I raise my concerns about the drugs - such as the bold warning on the furosemide that says high doses can cause irreversible hearing loss - my GP looks at me as if I have said something ridiculous and laughs it off.

    I am not so naive to believe that all side effects will affect everyone, but reassurance is something that goes a long way.

    My GP hasnt actually diagnosed heart failure but 'thinks' heart failure is what is causing my breathing difficulties.......!

    I was diagnosed with persistent Afib in Sept 2015, although signs and symptoms and diagnosis make me believe that it has been with me a lot longer.

    Since then, and with all the tests and treatments, not one of the cardiology team has ever said I have heart failure, including the cardio registrar I saw after my xray 2 weeks ago.

    I not that the Diltiazem leaflet says it will increase the action of Digoxin which I also take.

    I sent questions across to the cardiology team yesterday. I now have to go into hospital the day before the second stage hybrid ablation, for tests including an echocardiogram so that the EP can see for himself what is happening.

    This to me is reassuring.

    Thankyou Ectopic1 for all info.

  • Sounds spot on for sleep apnea. Never heard of AF doing that to anyone

  • Sounds very much Like sleep apnoea.

    My specialist in au told me I had to have a sleep study to rule it out. Otherwise my ablation had only a 50% chance of working, 80% chance if no apnoea .

    I ended up not having it. My son, not over weight had sleep studies when only 19, had 85 disturbances in the one night, machine since now 36.

    So please get it checked out.

  • I've had partial obstructive sleep apnoea for years. If my wife is awake she gives me a kick and that does the trick!

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