I'm currently on 150mg of Flecainide twice daily and (dare I say this..!) my last brief episode of AF was around 8 weeks ago so I THINK that the increased dose of Flecainide is working well however I now have a new very problematic symptom every single night which now makes me fearful of even going to bed - I wake up during the night 2-4 times struggling to breathe and with my heart racing & thumping and my mouth bone dry (normal resting heart rate is 58-65bpm- each night can be 80 - 120 bpm or higher) to resolve this I start taking very deep breaths and usually within 3-5 minutes everything returns to normal! I have a finger-tip pulse/oxymeter by my bed which suprisingly still shows my oxygen level to be mostly 98/99 (once 92) as soon as I am awoken.
I have been using Otrivine type nasal sprays on & off for years with the inevitable rebound effects and just recently have had to use one (oxymetazoline hydrochloride) 3-4 times per day and always before getting in bed to aid breathing, have also tried nasal strips plus the 'mouth guards' that you stick in the mouth-I have been to ENT & had camera up the nostrils-given 8 weeks supply of Flixonase steroidal nasal drops & Sterimar salt water sprays but so far no better. My big big fear is that the AF is going to rear its ugly head again PLUS being an oap how long can my poor old heart stand this?? I go to bed around 8-9pm and am always up by 4am!! Just when I thought the AF was in 'remission' I am now plagued with this new bedtime terror which is ruining this old man's life!
I have an oximetry test booked for 18th April but am so desperate to find a fix for this problem now!
Any suggestions or experiences please?
Thank you
Micron 5
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Fib36
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I would call your ep right away. It could be the flecainide and your dose may have to be adjusted down. Have you captured any of these episodes on a home ekg device. Could be flutter which flecainide can sometimes trigger.
Private appointment withEP/cardiologist asap. In the meantime keep a diary of all day to day issues to discuss nb you are at max Flec and it doesn't seem to suit you.
Be persistent until you find the right adviser(s) and solution(s), there may be more than one but when you do find them you will know as the confusion will disappear.
As Jean said, you describe sleep apnoea. Your GP should refer you for testing, after which, depending on severity, you may be prescribed and given a CPAP machine, which would mean wearing a mask in bed. I have a friend who has one of these and after a short period of getting accustomed to it, it is now second nature and has changed his life.
It is also possible to buy such a machine privately online , although the cost will run into several hundred pounds.
i have had af for over 20 years. Now have a pacemaker. But only recently a new cardiology said he doesn't know of anyone with af who doesnt have sleep apnoea. Test proved i have it and now have a cpap machine. So perhaps ask for test. Also take magnesium. Helps a lot.
if you don’t use a CPAP breathing machine for I recommend that you see a sleep doctor without delay. You may have sleep Apnea that is causing your AFIB in the first place.
Please excuse this simple comment. I am sure you have dealt with every home-grown solution imaginable, but I wanted to share:
I have had similar experiences with what I assume is a product of sleep apnea - awakened by heart pounding, gasping for air and worried that Afib was on the way. It has resolved with the deep breathing, although I have been awakened by Afib fully in place on several occasions in the past.
My "solution" for the problem has been to sleep with 2-3 pillows, with my head turned to the right side with my chin lifted. (During the night that shifts, of course.) I think keeping my tongue from closing off the throat or my head falling forward is key. (Sleeping on my back is the worst position for me.) I have had pretty good results, with much fewer incidents of nighttime breathing problems.
I was diagnosed with mild sleep apnea. I don't know how they determined that with the one hour I slept during the test. My main trigger for Afib is stomach gas. The CPAP mask can apparently put a lot of air in your stomach, causing gas, so I have not tried it. There always seems to be a "Catch-22"!
Many thanks for your reply. I had asleep apnoea oximetry test a couple of months ago but like you I hardly slept at all that night so the result was unconvoincing and my cardiologist decided "no further action necessary" - however I have asked for a further test but due to pressures on the NHS I cannot get it done til mid April. There are firms offering an independant test for £195 but I cant help wondering if its inevitable that they will diagnose sleep apnoea and then try to sell you their CPAP machine for £595!! My problem is centred around my excessive use of the oxymetazoline nasal sprays upon which I am now totally dependant as my nose seals totally each day & night and is sometimes so pressurised that my head feels like it will burst (also I am and always have been a chronically stressful person and daily stress moments also cause my bp to escalate and my nose to tighten up-even tho I have to use the spray every night, during the night this effect wears off hence waking with blocked nose, bone dry mouth & unable to breathe properly-sadly this problem has now escalated to several times each and every night hence my fear and reluctance to even go to bed-a very sad state of affairs! Deep breathing obviously plays a part as whenever I awake struggling to breathe the situation usually calms down in a matter of a few minutes after taking several very deep breaths. Bloating is and always has been another problem to the extent that some days my heart does palps every few seconds for several hours (fight or flight causes blood supply to digestion to be diverted to muscles!) In short I am and always have been a total dead loss - constant stress, no relaxation no real enjoyment of life - sympathy please!!
Regarding your high stress levels, may I recommend Ally Boothroyd for yoga nidra (body scanning/deep relaxation) and Jim Donovan, vagus nerve reset. I use both these regularly before sleep and they knock me out cold at night. I’ve been sleeping right through for the first time in years.
On another note, try cutting out all dairy as it can cause inflammatory issues in the nasal passages. It would only take a week or so to see a difference. I’d be interested to hear if that helps. x
I have no experience of Flecainide so cannot comment on that. However, may I add my voice to the chorus exhorting you to get tested for sleep apnoea. Your description of what you experience sounds very similar to mine and I was diagnosed with mild sleep apnoea last year and now use a CPAP machine which has completely knocked my nighttime AF episodes on the head. Although classed as mild, I was nevertheless having 9.5 oxygen drops and awakenings per hour (most of which I wasn’t even aware of) and my ticker was not happy!
I appreciate you say your bedside oximeter shows your O2 levels at 98/99 when you take it immediately on awakening and I can understand this may seem odd. However, by the time you have woken up sufficiently to take your reading, it’s too late, your brain has already kicked in and got you gasping for air, hence pushing your O2 levels back up.
All the best to you finding a solution to your problem, TC
In addition to what everyone else has said about getting tested I had another thought. If you’re going to bed at 8-9 and waking at 4, then you’ve had your required 6-7 hours in bed, which is fairly average for an older person. If waking at 4 is an issue, could you try going to bed later at say 10 or 11?
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