Scary Event

A few nights ago I awoke from a deep sleep unable to get my breath and gasping for air. It was really very frightening and I had to consciously take deep breaths to get myself back to normal. I thought it must be to do with my AF, but on meeting a friend that morning she told me that she used to get the same thing and her heart is normal. Spoke to my sister and she also said that she'd had the same thing and she has no heart problems. My GP however said he thought it was my heart and if this kept happening I would need to increase my medication. AF nurse said it was to do with the cold/flu bout I'd had.

My heart has been in atrial flutter for several months.

Anyone else have any ideas? Have you had this happen?

Jean

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50 Replies

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  • Jean it sounds much more like sleep apnoea to me than any heart related  problem. I'm no expert of course but worth thinking about. If you have had a virus then it is quite likely that your airways are inflamed and if you were laying on your back then this could well happen. I'm sure that you will know how much I value arrhythmia nurses and frankly would take their view over most doctors and almost all GPs  where AF is concerned.

    Bob

  • Hi Bob - Thanks for you response and yes I was sleeping on my back.

     When I spoke to my GP on the phone the following morning, I asked if it could be sleep apnoea. His reply was that I was too skinny for it to be that. Well, I was delighted to be called skinny, haven't been called that for years and took great pleasure in repeating this to my family. Because I'm tall I get away with the fat I carry around my middle, but I'm certainly not skinny! I am tending to go with what my AF nurse said as that's what I'd most like it to be, although I've never experienced anything like this before when having a cold/flu. I'll wait and see if it happens again.

    Jean

  • Do you have sleep apnoea, I was asked by the consultant at Harefield if I had it and I haven't a clue but sometimes wake with a start and pounding heart. I wonder how they test for this? 

  • Hi and thanks for your response. I thought it was going to be labelled sleep apnoea, but please see my response to Bob above. It was like waking up to find myself being suffocated.

    I'm really surprised that no one else on this site has had this experience as I know some people here have experienced sleep apnoea and I hoped they would be able to say if this sounded like it.

    Yes, I wonder how they test for this.

    Jean

  • Something similar happens to me sometimes when i have just dropped off to sleep. It is scarey but if i wake up properly and take some deep breaths i am fine and doesnt happen again all night. There was an explanation for this on here a while ago. It was something to do with changing from conscious to subconscious breathing. X

  • That's interesting I'll search and see if I can find that post on here. I probably didn't take much notice of it before as I'd never experienced what a horrible feeling it is. Mine happened in the dead of night after I'd been asleep for ages and it woke me from a really deep sleep.

    Hope all is well with you.

    Jean

  • Sleep apnoea is linked with AF, but there are two types of apnoea: obstructive and central.

    Obstructive is the type fat people are prone to, when the airway becomes blocked, and it's treated with positive air pressure from a CPAP machine.

    Central apnoea is when the autonomic nervous system fails to take over your breathing automatically when you fall asleep, and a CPAP is no use for that.

    See my posts here:

    healthunlocked.com/afassoci...

  • Thanks Ectopic, I've just read your posts and all very interesting. If I have apnoea it does sound like I would have the central type.

    I find it amazing that I can learn more from members on this site than my GP. He obviously only knows about the obstructive type,  mind you I guess they can't be expected to know everything.

    Jean

  • I think they send you to a sleep study centre where they wire you up with electrodes and ask you to go and sleep in one of their beds while they study your brain waves.. 

    I often wake up from nightmares with racing heart and panic and have several stock "bad dreams" one involving frantically looking for a toilet. (Ha ha) and others involving large buildings where I am searching for a particular room. I also sometimes dream about being back at work! What a nightmare!!!! Always within a few seconds I can bring everything back to normal.

  • Oh Bob, you have made me laugh and I needed that! It's odd you have a recurring toilet dream as I do too. In mine I'll be at someone's house and the toilet will be in the corner of the kitchen and people are around and I need to use it. In another the public toilets will all be overflowing and I'm just so desperate!

    Now you've made me wonder, do all we AF suffers have this type of dream.

    Jean

  • Your toilet dream same as mine Jean !! All overflowing or in full view ??! Haha! 

    Sandra

  • Thats the one!

  • I had a laugh too. I have lots and lots of weird toilet dreams !  I have AF and Chronic Kidney Disease 3 and have to pee several times in the night and I dream I find toilets in all sorts of weird places. Ha Ha. Glad its not just me.

    Dave

  • What an odd bunch we are with our toilet dreams! My daughter has the same dream too.

    Jean

  • Yes I am really glad I am not the only one who has them.  Usually when I find a toilet in my dream it is in a tiny basement or overflowing or no door and I cant pee when I get in there!  I think it is my brain stopping me from peeing in bed??

    Dave

  • My wife has serial dreams that continue from where a previous one left off.

  • You're not the only one - I have similar dreams and sometimes wake up with a racing heart even though, thanks to a cardioversion, I have been in NSR for over a year.

  • Had such a good laugh too - I manage to dream about toilets and being back at work and in each scenario I make such a dog's dinner of whatever I'm trying to do that I wake with a pounding heart.

    Hope your episode was the result of flu and that you're OK. xx

  • Yes, I'm not too bad today thank you Finvola. It sounds like we all have much the same dreams as I can identify with yours too. I wonder what it's all about! Do people with AF have more repetitive dreams I wonder? Do we have them because we have no control over our AF and therefore lose control in our dreams too? Thank you for your response and I'm glad that you have also had a laugh.

    Hope all is well with you.

    Jean

  • If I ever dream I only ever recall one two or three times a year.

    Possibly because although I quickly get off to sleep I waken up several times in the night and each time take longer to get back to sleep until I eventually give up and get up. 

  • When I was tested for sleep apnea, I was wired up to a portable monitor which I used overnight at home. Your symptoms do sound like mine, but I am no doctor. My consultant in Liverpool said that it can be the cause of AF so worth asking for a diagnostic test to exclude it. I feel a million times better now it's being treated.

  • Hi Lorna - That's good to hear that being diagnosed has helped you. How is apnoea treated? The portable test monitor used at home sounds better than being monitored in hospital where I'm sure I wouldn't sleep a wink. I will see if I have another occurrence and then investigate further. I really hope I don't as it was so frightening.

    Jean

  • I have something called a CPAP machine to use at night. Your best bet to get a handle on it all would be the sleep apnoea Trust. I thought I wouldn't manage the CPAP but it's easy and it works. Message me if you want more detail.

  • Jean, I've had exactly the same as you described about 3/4 times over the past few years . Yes, it is very frightening.

    I feel pretty sure i don't have sleep apnoea as I never snore, do not have thick neck ( only one chin lol! ) etc  My husband , on the other hand, given the right circumstances can snore for England , particularly after a ' few ' pints ( 18'' neck ). I know from listening to him that he has bouts of SA but he won't  admit to it .

    I think mine is caused by a combination of stress , tiredness, possible infection & as it has only happened very rarely I'm putting it down to just one of those things life throws at us !

    Sandra

  • Hi Sandra - Yes, at the moment I'm putting my episode down to just one of those odd things life throws at us. At the time I had a really bad cold and perhaps a touch of flu. It's difficult to know what we have health-wise when we're so used to getting spells of feeling washed out because of what our heart is doing. Thank you for responding, it does reassure me to hear from others who have had the same thing and know that I'm not alone with my horrible experience.

    Jean

  • Hello Jean, your first sentence describes exactly what used to happen to me over many years - not often but about once or twice a month. I would wake gasping and coughing to get breath, thinking I was dying. I would wake from lying on my back, shooting up and keeling over the side of the bed. Very scary. Afib was an unknown to me then. Saw specialist after 24 hr sleep monitor test and he said it was sleep apnoea. Sent me away  telling me  to stitch a tennis ball in the back of my nightie to stop me sleeping on my back!! Ha! Useless suggestion so I carried on coping with its infrequent occurrence. 

    In 2010, when I had my first "bad" episode of Afib, I learnt that sleep apnoea is a factor.  Treatment was Atenolol and aspirin and it worked. It was only last year when my 'dormant' Afib kicked off again, after reading about sleep positions may affect Afib, that I raised my pillows slightly and sleep only on my right side.  Since then I haven't experienced any more of those terrifying wakening-gasping-for-air moments. (I had to put a pillow behind my back in bed for a few weeks, to stop me turning onto my back or turning over to my left in my sleep. And I haven't woken in Afib either! But that's another post sometime) Do try it, Jean, it can't do any harm and may help. And do look at posts relating to Afib and sleep apnoea on this great Forum. Good luck! 

     Sandra 

  • Hi Sandra - It's interesting to hear of your experiences and yes what you describe sounds exactly like the one I had. I was also sleeping on my back, but certainly won't anymore. I will be interested to read your future not waking in Afib post. At the moment I'm in constant atrial flutter, have been since 5th Feb and am awaiting yet another cardioversion.

    I will certainly try what you suggest, many thanks for your response.

    Jean

  • I do hope  that you are not still on aspirin Sandra  as this has no place in stroke prevention for AF. If you are at risk you need a proper anticoagulant.  Aspirin does little to help yet can still cause unwanted and dangerous stomach bleeding.

  • Hi Bob! Been out all day and only just catching up on Jean"s posts re sleep apnoea and Afib. No, I am not on aspirin anymore. When my "bad" episodes started off again last April, the GP I saw was horrified I had been on aspirin since being first diagnosed in 2010. He wouldn't let me leave his surgery without a prescription for an anticoagulant. As he couldn't do Warfarin, he did Rivaroxaban until I got an appt at the local hospital Warfarin clinic. I have been on Warfarin since last September and soon stabilised. Going on Monday for INR test, after 4 months. Hope I'm still stable or I'll feel 4 months is a bit too long between testing!  As an aside, I was on 10mg Bisoprolol (plus 125mcg digoxin) since last June. Coped with lethargy just abiutt, but not the wheezy cough that developed, and the increasing breathlessness and coughing after any exertion. Was put on Slozem a month ago, with problems at the crossover period, and just had digoxin  dose doubled 3 days ago resulting in feeling unwell following 2 days with short episodes of Afib. Probably an adjustmenf to new dose as I have felt good all today. Still in permanent Afib but not a problem to me generally in its usual form. Fingers crossed! Goodnight!

    Sandra

  • looking for a loo seems quite common. I often dream about looking for a loo but it is always the same when I find one it is either disconnected, not there at all and only a pile of rubble where it should have been, or it is fully functional but there is no door and it is located in a public area.

    Regarding breathlessness I experienced this only once but in my case I woke up knowing I was unable to breath. My lungs just would not fill with air and I did not know how to get my diaphragm to start. After a few seconds of sheer panic something  kicked in and I  gasped a deep breath. It only happened the once but for several days after I was frightened when I went to bed in case it happened again. Touch wood....

  • Hi Bernard - That's exactly how my not breathing episode was, it was difficult to get air in to my lungs to begin with. I too dread the episode re-occurring, but if you have only ever had the one episode I think I'll copy you.

    Thank you for your response, it's reassuring to know that I'm not alone.

    Jean

  • Is looking for a loo the result of local councils closing them down around the country?

    In Edinburgh the Council are selling them to be turned in cafes. Years ago one was extended and converted in a lovely house beside Blackford Pond. 

  • My view is a lot of things in this country are going backwards . General facilities are getting fewer, when there should really be more appearing. I could go on and on about this, but it's not the right place.

    Jean

  • In Edinburgh they published a survey on the proposed closures. They asked very few people who evidently never went out or had very strong bladders.

    Many years ago when I lived there they closed about half of them. On the day of the Council meeting I Faxed every Council member to protest but only one bothered to reply.

  • Many people who have AF have sleep apnea and vice versa.  I think the sleep apnea starts the AF as when you wake sudden it jolts your heart out of sync. I have been waking gasping and also been told im too thin for apnea however there are two types central sleep apnea happens when your brain switches off your breath and has nothing to do with weight. Lying on my side helps me but ironically isnt good for my afib its a balance act!

  • Hi Andrew, thank you for your response. It's interesting that you say there are two types of apnoea. I will go and look on the internet and investigate further, but I'm really hoping I won't have that awful experience ever again. My right side is the best for me to sleep on, when my breathing event happened I was on my back. Before AF struck I would always sleep on my left side, now if I try to lie on that side my heart will start to do all sorts of strange things and it can set my tachycardia off.

    Jean

  • Hi Jean, 

    I would suggest that you ask your Dr for a sleep study. I was diagnosed with sleep apnea a few years ago. I am currently sleeping with a CPap machine because it was found that I stop breathing numerous times during the night. It is also suspected that the apnea caused my AFib as I have no other medical issues. Good luck in finding the answer and let us know how you are getting along, Gracey 

  • Hi Gracey - Thank you, I will certainly bear in mind what you suggest. I generally wake a few times in the night and from now on I'm going to be checking what my heart is doing and if I have any signs of being breathless. Do you find that you have less AF through using the CPap machine and what exactly does this machine do?

    Jean

  • Very interesting topic. When I first started AF I searched for triggers

    just like a lot of other sufferers. Alcohol was definitely one. My wife was convinced I

    had SA as she said I often snored a lot during the night and struggled and gasped for breath.

    When I began a log of AF events It was apparent over 80% began

    during the night when I awoke with palpitations. I always slept on my back but

    since then have gone to sleep on my right side. I asked to see the sleep clinic and after the overnight sleep study at home I have been diagnosed with mild SA. The results do show however that 59% of my sleep time was on my back.

    The consultant advised that I had 8 apnea events per hour, he said a 'normal' score would be 6. With full blown SA he said this can be upwards of 30.

    My longest time without breathing was 57 seconds. I thought this was horrendous,

    but he was not concerned. As the SA is mild they don't plan further treatment.

    Since beginning sleep on my side my wife does  report I don't have such disturbed sleep and my AF events beginning overnight virtually disappeared. I have had an ablation back in Jan but still getting some AF so may need another. I am about 9.5 stone, skinny as well, small size in all clothing so I also don't fit the 'normal' profile for SA.

    My GP did say that I wouldn't have SA due to my size, he also said 'your brain will wake you up'.

     

  • Crumbs, not breathing for 57 seconds does sound a long time and interesting that they didn't think this was a problem. Yes, a lot of my AF events would start in the night too, or if I'd been sat for a long while. I usually sleep on my right side, but just lately have been on my back too, think I'll give that a miss from now on.

    What did the sleep study at home involve?

    Jean

  • Jean.

    The sleep study is a contraption about the size of a cellphone,  which hangs around your neck with straps containing sensors which fit around chest. This attached to a small monitor unit strapped on wrist with another sensor to it fitted over a finger. This collates a lot of info, like sleep time, snoring time, oxygen levels, apnea events, low and high sats, pulse, how long on back, if you got up in the night plus other stuff. Why not ask for a referral from your GP. If nothing else it's interesting and may well prove useful.

  • Yes, sounds like a good idea, will give it some thought.

  • Hi. I had the sleep study 5 years ago, becos it was noticed during a stint in hospital that I woke suddenly gasping for breath, for a brief period. However the study noted that I did not have apnea.

    However I am on Bisoprolol which, on higher doses, tended to stop my breathing when asleep, or when half way to sleeop, and i woke up gasping. The higher the dose, I found this to be more problematic as my dosing increased over the years. These days, fortunately,  on 1.25mg per day I don't have the problem.

    Bisoprolol ?

    Phil

  • Hi Pip - No I'm not on Bisoprolol, I take Metoprolol with my Flecainide but have only been taking these tablets regularly since last December. I often wake up in the night and am now going to check how my breathing is then. I think I will need to have more episodes before I get too worried about something to help. I'm wondering and also hoping that my cold/flu triggered the event.

    I'm glad to hear that you don't have a problem since reducing your Bisoprolol.

    Jean

  • I've just read the other replies, I recognise the toilet dreams! However, regarding your breathing episode, I had a horrible experience as I came round after my ablation, gasping for air and being very woozy and seeing the world very blurrily through the oxygen mask thought I was drowning! Before my ablation I had a few 'drowning' nightmares which I guess were caused by SA, but I have asthma and scarring of the lungs so I think that makes it worse. I'm sure the nurse is right about the cold/flu.

    I hope it doesn't happen again, I can sympathise with the fear.

  • Jean, I can relate to your symptoms also. I am in permanent AF since December 2011. For the last year or so I have had an increasing frequency of waking up fighting to breathe. The sensation, apart from being terrifying, is as if my lungs are going to burst accompanied by a violently pounding , racing  heart beat. The whole episode makes me feel extremely unwell but worst of all upsets my stomach to the extent that I feel I have eaten something really toxic! It takes about thirty minutes before I start to feel better. Unfortunately this is now occurring every night, sometimes twice.

    When I have one of these episodes I am always dreaming of running away from danger or having a heated argument with someone or shouting a warning of imminent danger to a companion but no sound comes out of my mouth. I have read that this may be triggered by the vagus nerve, it can happen whether I sleep on my back or my side. I am on 10mg of Bisoprolol and 4mg of Warfarin. What really worries me, apart from dreading bed time, is the strain on my heart.

    GP says that it is probably caused by atrial fibrillation!!

  • Don't think I was dreaming when I had mine, but I agree it really is the most awful feeling. It took me ages to get into a normal breathing rhythm too. It felt like a near death experience. Sorry to hear you are having these episode more frequently, that must be awful. You're on quite a high dose of Bisoprolol aren't you. Does taking that much make you feel tired?

    Jean

  • Thanks Jean, the Bisoprolol does make me tired, however, the cold feet and hands is the worst aspect! In a strange sort of way it's comforting to hear that others have the same problems but are full of confidence and winning; I really hope you can get yourself sorted and will feel really good soon!

    Graham

  • I had been diagnosed with sleep apnoea years before my heart went into AF, I have CPAP and thought Af had disappeared but returned two weeks ago and I ended up back in hospital. They didn't seem to sort much before discharging me to go into yet another que to see Cardiologist about my heart rhythm and see if need to alter meds.Re choking and unable to breathe I get this and am sometimes struggling all night to breathe but no one can tell me why or now to make it go away.

  • This is such a horrible condition. We never know from one day to the next how we are going to be. Sorry to hear that your AF is back and your problems re breathing. I often feel that I'm breathing but not getting enough air into my body. People who don't have this haven't a clue what we go through.

    Jean

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