It's 3.30am!!! A dark time (literally)

After 18 months I fear I have gone from PAF to AF. My attacks are much more frequent! Wednesday y Am then Friday Am, when I could go weeks without any it's now days, I admit they only last hours, but used to be minutes. When I was diagnosed 18 months back I was sent into such panic and depression (well anxiety is more the word) that some of you may remember I was so bad that I cancelled my trip to visit my daughter in Sydney!! Even though I was told would not get any money back!! Also even though I had bought a new outfit I just could not face my nephews wedding!, was put on antidepressants but felt well enough to stop them 4months back, but now I feel edgy again as attacks increase. why is it always in the night!? !guess it's the laying down! Started soon as I got in bed so sat up on pillows and fell asleep but was woken 2 hrs later again (hubby sleeps I next room as he has health issues of his own! (I feel so alone) I have not seen a cardiologist in a year and have never seen EP., guess time to go back to GP for referral again, put it off because I do go back to nsr (usually after hour or so? And am so afraid of ablation and cardioversion) sorry so long but helps to do this at the time. Many of you say you have weeks and days of it, CAN imagine how awful that is!!!!

Lynn

51 Replies

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  • I really do feel for you. AF is such a frightening experience. Anxiety certainly kicks in. I too seem to get episodes of AF when resting. The times I have been woken up with it are certainly more than episodes when active. I don't understand why when resting the heart suddenly decides to go into overdrive. I am a new forum user so am a newbie at this. Yes, I agree that you feel so alone when experiencing AF especially at night but there is always someone on the forum that can support you.

  • Hope you are now back into NSR, I know,exactly how you feel, it happened to me last week when it lasted 13 hours after 9 months free of it. Exactly like you I also wonder why it happens when at rest I was sitting relaxing watching TV then suddenly AF!! This forum helps me enormously and I am sure you will also find the same, Hope you see an EP soon, maybe you can go privately for the first time as you seem to be a worrier like myself, that would cut waiting time. Very best wishes.

  • It is to do with th vagus nerve which males AF more likely when resting. Some people have vagally mediated AF some do not.

  • Bob, what drugs would a person be on if they were vagally medicated

    ,

  • Same as anybody else hopefully but there is a feeling that beta blockers are not the answer for vagal AF.. ...so rhythm control rather than rate control.

  • I thought there might be a drug to relax the vagal nerve.

  • OK quick lesson in vagus nerve.(Vagus noun. vagal adjective, vagally adverb) It is the main neural super highway which links the brain to the heart, stomach and other organs. Part of the autonomic system it speeds things up or slows them down according to what you are doing. When resting the vagal tone is low and for some reason this makes AF more likely.

    Any treatment to calm one's inner self should help.

  • Some have both

  • Thank you fir a sympathetic ear x

  • Hi Lingooz, it is no surprise that you are feeling like this AF is a very frightening and lonely experience. The one good thing is that you do return to NSR on your own. You need to see an EP, the expert, to assess this change and to adjust your medication, which obviously isn't working well enough - see your GP and tell him you need a referral. Many here paid for an initial private consultation with an EP to speed things up for peace of mind.

    Don't wait any longer. Best wishes.

  • I agree with all the above advice. You may have the vagal type of AF if it comes on at night when you lie down. I find that sleeping at about 45 degrees helps!! I hope you see a specialist soon and get some proper help.

  • Hi it does help if when happens I sit higher on pillow, but I wake with many aches in my side and back as have athritis as well 😨 thank you for taking time to reply

  • After 9 months from being diagnosed with PAF and reaching the conclusion mine was vagally mediated, I bought an adjustable bed. It has really paid off for me, as I don't have episodes during the night at all any more. Mine now seem to be triggered by a big meal, so I've learned to tone that down. I do not take any routine daily drugs. My EP said I could just take the beta blocker when having an episode to slow the heart rate and that works for me (HR is now never more than 120-130 when in an episode). I'm always alarmed when I read here how many of you are on these daily does of Flec and various beta blockers. Perhaps the UK medical community is more inclined to prescribe these [nasty] drugs than the US medical community.

  • Hi not on any med just warfarin, have metoprolol as pill in pocket, hate drugs to (can't afford the bed sadly 😱) thanks for reply

  • I too take the warfarin daily. Prop yourself up with pillows as others suggest!

  • Are your chairs recliners? If so then try sleeping on those with your duvet particularly if you think you will be having an episode due to a recurring pattern.

  • From what I read here, seems like it is the opposite. Not much of a waiting list to see cardiologist, who then refers to EP. These drugs are routinely prescribed.

  • Easier to get GP to refer straight to an EP.

  • Yes, I was actually referred to the EP by my GP and saw him within 3 days. Something tells me (reading posts on here) that our Medicare in the US is outstanding!

  • I do feel for you but the AF will not go away so the only solution is to deal with it. You do not say if you are on rhythm medication to try to reduce the number of episodes. Unless you are prepared to be in full time AF then you should consider ablation. You need a GP referral to an electrophysiologist asap. I was very, very worried about the idea of ablation but as many others have said it was much easier that I had imagined and you can imagine the relief at being AF free.

    Peter

  • Carol70,

    when I was first diagnosed with Paf my episodes were once a month, they last around 24 hours, over the next 18 months they became more frequent and more intense ,until I was having episodes 2-3 times a week,

    my life became more & more miserable and restricted, I felt like a victim of Af, I came to this website and read other posts and decided to push/fight for an Ablation,

    for me it was the best solution and I've been Af free for over 2+ years, I got my life back

    Id say to anyone in a similar position, seriously consider this treatment asap if possible,

    Good Luck

  • Yes night time AF is even more scary that daytime but still it wont kill you. Your AF is still paroxysmal as it comes and goes. The frequency of those events is just the natural progression of the condition. You really need to find a strategy to remove some of your anxiety so that would be my first task if I were you. Speak to your GP about CBT, mindfulness or hypnosis or some chemical help if needed in the short term. Long term you need to deal with the root problem of your fears as there really are no guarantees that you will ever be fully AF free . Ablation seems to have the best chance of this as I found but this may not be for life. Changes to life style such as reduction in meat consumption, alcohol reduction, weight loss, getting fitter, reducing salt and sugar intake etc can all help and in fact at HRC we were told that contrary to what people may think those with AF frequently live longer than those without just because of these life style changes.

    There is no magic wand I'm afraid but the mind is very powerful tool.

    Bob

  • I think you're correct (as usual) that the mind is very powerful. Once I got over my anxiety about my diagnosis, and read all the good information on here, things calmed down considerably.

  • With AF nobody other than you can see or feel how you feel. It's not like breaking a leg when everyone can appreciate your pain and see you limp! The uncomfortable feeling of AF makes you edgy and anxious and that anxiety itself doesn't help the condition. It may feel like a long road but you still have many options which a sympathetic cardiologist or an EP can help you with. I used various medications over 20 years with a fair degree of success although the older I got the more frequent the AF . Eventually, I went down the ablation route ( and I was scared of this for years) and I'm hoping that will work, although I'm not afraid anymore if I had to have another one. These procedures have come on so much, and are safer and more precise with greater degrees of success. The fact that you get back to nsr naturally, bodes well for such a procedure. I can't tell you not to be anxious as I still get anxious myself, frequently!! But you do have options, and there is light at the end of the tunnel. This forum isn't exactly an agony column, but there are lots of people willing to share their experiences and it's great to have sympathetic friends out there! Good luck

  • Lynn, you say that you are so afraid of ablation. Well, all those of us who have had the procedure were scared witless too. I promise you that it is no fun but there are far worse things. AF made quality of life very poor for me. I felt that I had no alternative but to go ahead with the recommended ablation. I have no regrets whatsoever.

    Take control. See your GP. Get a referral. Obtain proper treatment. Do everything possible to improve your situation so that you have no regrets.

    If you want to discuss anything privately then send a message to me, or any of us.

    Very best wishes.

  • Thank you Jenny x

  • I am feeling for you all. I had a duel AV Node with long attacks for 50 years, from 12 years old---- Sup. Ventricuala tachycardia. & atrial fibrillation before the electro-physiological breakthrough came.

    It was not considered to be physical!! & I had to just pray to escape being labelled as psychiatric & the stress of people's criticism , & to endure the severe long attacks.

    The oblation of the extra node came when it was getting so bad that I could not have gone another day!!!!! IT WAS LIKE A MIRACLE.

    I can relate to the fact that it more often than not comes when relaxed --- the changing position to lie down at night, the sleeplessness with agitation, the vagas nerve (the specialist called vasa- vagal syndrone, the significance of breathing ---in that I always began to yawn when it was returning to normal.

    The large severe attacks were corrected but not some less severe arrrythmea. But, I am 83 & only now have had to resort to eflecenide, to help irregular beats. Another oblation has been offered but without guarantee that the fault could be located & fixed.. So, with age, I am enduring.

    I can testify, that I would never have got through without prayer & true Christian friends. They always believed me & cared, while the world condemned me as being neurotic & psychiatric! So, we do have some things to be grateful for, in the medical advancement & understanding.

  • Thank you so much for taking the time to write, must have been awful for you, early days my hubby and doctor did not seem convinced either, it took a 999 call and going on monitor to prove I was nit imagining these awful thudding beats, it showed heartache of 184, so was blue lighted in to A & E where a lovely doctor diagnosed me with PAF, and yes medical advancement helps for sure! I took have Christian faith 😀! Wishing you well x

  • what a hard time you had and well done for coming through it as you have- lessons for us all here!!

  • Ditto....single ablation 2 months ago did the trick. Gretting stronger each day, eating better, worry less.

  • Hi Jenny, could you tell me how do you do a private message to anyone. Thanks Sann x

  • Tap on jenny (or whoever) you will see message option 😀

  • Thank you so much for your advice and kind ear x

  • Relaxing is a good idea. No medication will revert you to NSR if you only have PAF for an hour. I have always had 12 hour PAFs, which can be treated with Flecainide. Avoiding stress might help. Learning how to keep calm.

  • I try honest! I do a breathing technique which hospital showed me and sometimes reverts me back thank you for your reply

  • Could you please give us a brief simply on the breathing technique.

    I have a theory that there must be pressure points that can be used to divert the pathways, & have had a glimpse when the hospitals used to try things like putting the feet into hot water.

    Also, some have gently rubbed different pressure points.

    I once brought on an attack by foolishly pressing around the neck area.

    Knowing that this is a short circuit, I am sure there could be at least some success by knowledge of these points. Some Indian people have techniques along these lines, but for the sever attacks of course, it is not so simple. I may be wrong but any partial relief at least could be worth investigation.

    Blessings, jansang

  • Hi Jansang! You breath in deeply filling cheeks up with air, then let out very slowly (makes a popping sound when letting out) works for me, good 🍀 luck

  • Thanks so much lingooz, I do not get the severe attacks as I did before the oblation, but any degree of irregular beats is distressingly debilitating, is it not!

  • Hi Lingooz, I agree with Rosy, try more pillows in bed. Next consider joining the 'Magnesium and CoQ10 Club', I am sure those supplements help many including me. Also, stay in control by acting early and paying privately to see a cardiologist promptly as you may need Flecainide and the right dose level to stabilise it.

    On anxiety it is important to recognise that is common in the early stages but usually goes once you have it stabilised and with more information and advice from the medics, Alternative Practitioners and here. To help it right now I suggest you set aside some time (say 30mins) early evening and practice breathing exercises (I do just one Qigong exercise but there are many different ones, it gets more effective the more weeks you do it), mindfulness and spiritually - I 'm a bit lucky as I already had some Christian beliefs. You might try a new hobby - I took up drums at 60yo!!

    Lastly, although I appreciate maybe not easy now, be determined to match the downside of AF with some positive outcomes.....I exercise more, my dental health (yes it is connected) has had an overhaul and I now focus on the good things of each day.

    Good Luck!!

  • Thank you! My heath should improve now on healthy diet and I have good dental hygiene says my dentist 😀 will get appointment to see GP for EP appointed to

  • When this used to happen to me I would be filled with dread and would often feel panic and fear... I truley understand your feeling.... Try having some more pillows and avoid sleeping flat, I found being propped upright on my back worked a little bit better once I had calmed down enough to go back to bed.

    I too, had a big fear of ablation procedures but for me in the end there was no choice... Medications were not holding it and I was at risk of my paf becoming permanent af I was very poorly on a daily basis and at age 35 could not look after my children, go shopping or get up the stairs without been struck down, I stopped going out and doing things I needed to do in life and my fear of having a procedure was holding a chance of recovery back.

    If you can find your wise mind that will be the one saying to you that an ablation would be your best option to to symptom free, then grab it and run with it, it's a better out come while you still have paf than af permanent... I've had the courage to go through 3 procedures now,2 was to treat svt and the other was a pulmonary vein isolation, they found my af was coming out of three pulmonary veins.... It was hard going but I don't look back now, 7 months down the line and I'm free of it and enjoying life to the full.

    Try and seek support for your fears, I practice mindfulness it really helps keep a lid on your emotions when your having physical symptoms and helps you regulate your thoughts so that you can think more clearly in the present moment.

    More than willing to share more of my journey with you if it would be helpful.... Hold on don't loose hope...

    Kindest Regards. 😊

  • Ah! Thank you for kind words and advice, will bear it all in mind x

  • All I can say is this. I had PAF for several years with "attacks" happening about every two weeks and lasting about 3 days. Then about 5-6 years ago one of my episodes did not stop and I went into permanent AF and it has totally transformed my life for the better. No longer am I wondering when an apisode is going to start and I am now at the stage that I am hardly even aware that my pulse is irreguler unless I actually feel it. As far as I am concerned being in continuous AF is much better than PAF.

  • But as far as treatment outcomes are concerned it is said that you have a better chance of success for ablation if offered during paf phase than when being in permanent af. Paf will increase over time and its progression is to permanent af so I believe... I think if your symptomatic with paf and meds are not holding then if an ablation is recommended by ep it is because treating now stops it becoming less treatable or later becomming intolerable to live with or indeed suffering the affects of a stroke. Having said this to your above response, if your not having any symptoms or does not affect your quality of life having af then I can see why you might say that. For many of us who have started to progressively get worse it's not made life "better" as af has taken hold! I think each individual does need to gather as much information as they can and educate themselves selves and seek advice before making decisions.

    Do you mind me asking as I'm curious, are you on any meds or blood thinners that are holding your symptoms if you have any? Have you been offered treatment in the way of ablation? Or are you a lucky one that there are no conciquences for you having continuous af and can just go about life with no ill affect? cause that's great if it is a simple as that for you!

    Kind regards 😊

  • Hi, 4Charl I have metoprolol as pill in pocket, not used as yet as whilst thinking about it (about hour) I go back nsr (luckily). I am on warfarin though. When I saw consultant he just put me on them and discharged me? Over year ago now, am ringing for GP appointment tomorrow to try see an EP. I was initially on bisoprolol but side affects were awful. So far I am fine except for lately one or two episodes a week at night!! Last night I propped up more and was fine (could be coincidence though) as afraid as I am I will try to see a EP because a lady in my village had ablation on first attack and never had episode since (5 yrs) her description of the ablation sounded awful so puts me off, but as you say, more chance of working now . Thank you for your time

  • Lingooz, sorry that second post I wrote was for Noirtier as I was curious as to how being in permanent af had transformed life for the better! And wondered what path of treatment if any Noirtier had taken.

    My symptoms started off very slowly and was told it was all in my head for years until I had a reveal device fitted in my chest, which led to a fast diagnosis, I to had bisoprolol but had bad nightmares and seeing things so it was stopped. I'm glad to hear you are on warfarin, it's a little piece of mind and protection.

    There will always be good and not so good stories about our journies with af, like pretty much experiences in life as a whole, do yourself a little pros and cons list as you go and look at it regularly to see if any change with time and swap columns, it can be a good indicator and way of making decisions or doing what's right and best for you, you might find eventually it's a definite no as your cons list grows or it may become apparent down the line the pros of treatment if your symptoms or quality of life is more affected.

    Try and tap into some relaxation in the mean time, there are some great resources on line for mindfulness body scan practice and voice guided ones on you tube...

    Good luck with everything, do what's right for you. 😊

  • wow

    lots of good advice to read and think about

    Had a similar 03:30 session last night so it strikes a chord.

    I find night seems worse than day except do find I feel burpy a lot would all that be down to the vagal nerve?

    Found the adjustable bed in hospital great except that if i did get it right I slid down in a little heap.

    At home Propped my self up with loads of pillows at but last night was one of those where I just could not settle . Sat in chair tried to get comfortable but just got out of breath. One of those days where you think its beating you and you wind up dwelling on how tired you feel and need a big reminder to self to press on

    I guess press on we must.

    Got Cardioversion midweek - not looking forward to it or the after effect of the knock out stuff, just hope it does the trick for a good while , be devastated if nothing much comes of it. How quickly do those of you that have had it find you are back on top.

    Onwards and upwards.

  • Very good luck for Wednesday 🍀

  • thanks

  • I know the feeling of "dark times". I was put on beta blockers that still allowed hours of AF to creep in. spent time with Tv games in the night and a sleeping partner snoring his head off. Always a relief when I converted back into normal rhythm. Each time I was convinced I was dying. My partner had a lot of time off work without pay during the "dark times"and now we face crippling debt and no one seems to help us because we are not on benefits (should have been but didn t know )

    Now on Flecainide and no problems at the moment. I don t take anything for granted and live each day being aware of the present and not thinking of the future (bit of Mindfullness creeping in)

    Would love to get together with like minded sufferers

  • So sorry to hear of your predicament! Yes you may have got help! But my husband is disabled and on DLA and dreading the new PIP. Application as they are so strict now.

    It is a worrying condition, not least because of its unpredictability.

    Re getting together, have already spoke to another lady who wants to do that, says she should be free in November! But we don't live that far apart, me Norfolk her Suffolk, so depends where you live if you would like to join us 😀.

    Let me know and keep well

    Lynn

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