Funny feelings with paroxismal AF

its been a while since I posted so here goes, the roller coaster never ends. Why is it that I seem to be suffering with really bad feelings of dread and fear for no apparent reason it kind of hits me from nowhere then I start to notice my heart rate jump about then start to worry about going into AF.

I'm seeing my cardiologist next week for the results of a 7 day monitor but I get the feeling from my GP that they don't know what to do with me and hospital don't seem over concerned about my condition, I'm struggling a little bit.

I'm going to try and get a referral to electro cardiologist, I need to tame this problem it's really starting to effect my life.

I was taken off of bisoprolol and put onto solatol a couple of months ago but haven't really noticed a difference it's just that sometimes simply moving about makes me feel worse and other days I'm ok.

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  • My experience (and I think I have heard others say the same) is that the feeling of dread ( I'm doomed, doomed - not joking, it really does feel like that) seems to be at least partly physical, one of the manifestations of AF. I have had a successful ablation and still get it. I think it helps if you know that because you know it will pass and won't lead to anything bad.

    I'm sorry you are having such a bad time. I gather most GPs don't know what to do with anyone in AF so you are not alone there. An EP is going to be much more helpful I'm sure.

    You will surely get lots of encouraging replies tomorrow but in the meantime best wishes for a peaceful night!

  • This is such a coincidence as this is exactly how I felt yesterday with no tangible reason.

    I slept so badly last night yet not a sign of AF.

    Pete

  • This is why I bought a FitBit with a heart rate monitor. It's so comforting to see the nightly heartbeat trace.

  • I have realised that those feelings of dread normally mean that I will start to get palpitations and sometimes I go into af, and once the episode finishes the feeling of anxiety lasts for a few days

  • I am totally fascinated by this as an AF suffer and a Psychotherapist. I'm pretty convinced that the doom feelings (very really and notable) are physically caused and not psychological and portend AF

  • Sorry Ads7906 that you are feeling like this.

    I think your gut instinct that these feelings are not coming from your mind, but from the body, is likely to be correct.

    I mention a different condition below here (called POTS), merely as a documented example of this, (not because I think you have that condition), so I hope it helps back you up.

    Elaine1951 , you might like to look up POTS (Postural Orthostatic Tachycardia Syndrome) as one very clear example of a physical cause being taken as a psychological one. It is a disorder of the autonomic nervous system. It might be an interesting piece of the jigsaw puzzle for you.

    @Ads7906, just in case you find it relevant:

    My own example is, it is common to get feelings of panic and terror when your BP is going down (& in POTS, sympathetic nervous system is overreacting to that). I know this cos I have POTS and before it was diagnosed it was dismissed as panic attacks.

    If you could make a note of what's happening with your heart/body every time you get the dreadful feelings, you might find a pattern emerge.

    You might then be able to tell yourself "it's not me panicking, it's my body"' and use the feelings as a cue to do whatever is helpful to alleviate the problem.

    When you have identified an established pattern, remember to keep an eye out for change. (I got too stoical and blasé for my own good and was ignoring bouts of AF, treating it as "just my POTS". Not good).

    ***My overall point is, that your dreadful feelings are only likely to occur when something needs attention, so don't let them frighten you but use them as a cue to cut yourself some slack so that you can feel better.***

    If your BP does go down at these times, (it's just an "if" as obviously I don't know), then try getting your feet up quick, (as well as staying well hydrated).

    It will be a good way to alleviate the feelings while you attend to whatever else is triggering this.

    Your question is a great one as it is really useful to find out what is causing the dread, so that you can do something about it.

    ***So don't let these feelings discourage you, treat them as a useful cue.***

    Sorry for rambling.

    I do hope you get a handle on this and start to feel better,

    Boombiddy.

  • Great advise I'll try and keep a note of things next time it happens.

  • I notice a feeling of being very impatient and bad-tempered and know ectopics (PVC's) have started - even though I hadn't yet noticed them.

    My non-medical explanation has been that some part of my brain recognises something isn't right and reacts chemically which alters mood. Perhaps it's the same with AF, only more severe?

  • I know what you mean. MIne is coming on like clockwork about every 10 days and lasts almost exactly 16-20 hours. (Why is that?!) So when it's coming towards it I find myself checking my pulse if I think I felt a palpitation. I don't dread it though as I don't feel bad during those 16 hours, just maybe a bit tired and slightly breathless. But I just carry on and feel elated when it goes. Only take 1.25mg Bisoprolol which frankly does nothing. EP and doctors relatively unconcerned and re-assuring and heart tests seem fine so I'm not really that bothered other than leaving it up to me as to whether to go on anti-coagulants. EP says it's marginal and the increased risk of a brain bleed probably means not worth it - just yet anyway.

  • My doc would have you on an anticoagulant inmediately. Your episodes are too long and you are always at risk for a stroke. Have you tried Flecanide?? This drug stops mine within,1-2 hours.

  • So would my doctor have you anticoagulated.

  • Mine would too

  • In connection with having a run of pvc's or ectopic beats, my Doctor put me on a beta blocker, inderal, which I now still have as a pill in the pocket for these issues as well as af in general but also if I go into active fib (mine is the paroxysmal form and very intermittent - a couple of times per year, usually in the spring and fall, and always, at least so far, self terminating within an hour - advantages here are primarily (at least for me) the anti anxiety effect of the beta blocker with inderal being the most active in this regard - atenolol is also used in this regard - beta blockers can be used in general for afib but they have the added benefit of anti anxiety properties and let's face it, this is a state that produces anxiety - now there is some question about the appropriateness of beta blockers in afib cases that are thought to be vagally mediated since beta blockers slow the heart rate which can exacerbate vagally mediated afib but low dose and especially occasional use is not believed to be a problem - one of the issues I have struggled with is that feeling of apprehension or dread in anticipation of an attack and the physical symptoms of anxiety can sometimes overwhelm the thought processes that might otherwise allow me to talk myself out of an anxious state -beta blockers calm the physical symptoms of anxiety thus, among other things, allowing you to get a better grip on the mental aspect

    anxieties.com/159/beta-bloc...

  • I can relate to what I would call a feeling of impending doom. I was /am more aware of this if my AF episodes start during the daytime. I would almost always progress into a full blown attack.

  • Hello Ads7906. Same here also. A feeling of doom and anxiety followed by ectopics/pacs which develop into AF. I am in AF most of the time anyway so when these doom feelings appear then, it just intensifies the AF.

    I believe its connected to the 'flight or fight' response so I guess adrenaline or one of the compounds adrenaline is broken down into, causes my AF in most cases.

    I hope you get to see an EP sooner, rather than later, as over a three year period, my AF has gone from paroxysmal to persistent.

  • I really can't imagine being in AF persistently jonnykernow but I know from this site that a lot of people are! I don't know how I would cope, bad enough Paroxysmal for nearly 30 years and now in fast sinus for the last 2 weeks. I think all your positive responses make me feel humbled.Thanks

    carol

  • I think what Buffafly and Netpi says seems to be a common theme, we understand and feel for you at the moment.Try to be strong and keep in touch with us.

  • @ bear5814 . I don't know if you are in the U.S? Here in the UK the view about AF seems much more laid back. The top EP said it is only likely to affect a healthy heart if you have it permanently over a number of years. Also seem to think the risk of a stroke is the same whether you have one short attack or a lengthy one - although I have always struggled with the rationale of this. Also in the UK we are trying to get away from solving problems by taking drugs - especially with the problems caused by the over prescription of anti-biotics. It would be nice to have a pill that could be just taken when AF starts to stop it, I must say, so long as it had no side effects. I'm not saying the UK is right, or my EP is right, but that's the pathway I'm on at the moment and I don't seem to have the obsession or fear about it that many on here do.

    Dave

  • I also get these feelings of doom when going off to sleep on occasion. I find it so interesting that so many of us have similar experiences. There is surely a link with our brains and hormones. I think this is an area that should be studied by the medical community. My daughter who is trained in yoga and Reiki believesthat my AFib is worsened by my fears. After reading all of these posts I think she may be right! There is definatey a connection with our physical and emotions. Let's keep this conversation going! Gracey

  • There's definitely a pattern here.

    Never realised how many others had this 'weeerrr dooomed' feeling so often.

    In my case I have put it down to the fact that I only recently had my 4th AF ablation and 2nd Atrial Flutter ablation coupled with the real longing for it to be successful this time.

    But if there is more to it than this (we may never know) it is an even more complex condition than I already thought.

    Pete

  • I understand the feelings of doom and anxiety, too. When I had flutter and fib they rose up and I stared them down, but not always. Now that the AF is cured I have an ongoing battle with mast cell activation disorder, which makes me dizzy, exhausted, bleary-eyed, and a few other things. Every day, like clockwork, the symptoms hit an hour or so after I get up in the morning. For at least an hour or two I can't drive or do much of anything. Sometimes it's the whole day. This kind of life is no life at all because I can't do anything except as the symptoms allow, and they operate randomly.

    So what does this have to do with this forum?

    Since the mast cell issues came on 15 months ago, I've had the worst depression, anxiety, and fear I've ever experienced. For the most part I practice equanimity and acceptance, and this approach is available to everyone with a functioning brain. But I must admit sometimes they get the best of me. Then I recover and continue on.

    I do not believe anxiety is the direct result of any physical (i.e., non-mental) event or process. It's the result of taking fear seriously and giving it power. We can take back that power and gain control over it. It takes practice but it can be done.

    My path toward mindful awareness started a long time ago. But what gave it an enormous boost was listening to Tara Brach's discussion of radical acceptance, which happens to be the title of one of her books. I listen to that talk from time to time - most recently last night - and offer it to you. I know this sounds like hucksterism, but it's true: In one hour you can start on the path of overcoming your fears and putting anxiety in its place.

    The talk is available on my website and is available to anyone without charge.

    codabone.net/dharma_talks/b...

    If you're interested in more from her, you can check out other resources on this page:

    codabone.net/dharmatalks.htm

    If you feel down on yourself, you might listen to one or two of Kristin Neff's short guided meditations on self-compassion, also on this page. They've helped me get over myself when I've needed to do that.

    There are many other resources to help people struggling with feelings of anxiety, poor self-worth, and depression. These are just a few. Perhaps if you know of others you might share them here. A lot of us can use the help, myself included.

    Koda

  • I stand somewhat corrected. Recently I've read that mast cell-related problems can indeed cause anxiety and depression.

    This post shares some of Dr. Theoharides' research related to mast cell disorders and histamine intolerance.

    thelowhistaminechef.com/the...

    There's also research showing that mice with a mast cell genetic disorder (having to do with the KIT gene, I believe) exhibit fear and anxiety where normal mice do not.

    it makes me wonder if there are any other purely physical causes of depression, anxiety, etc.

  • I wish I knew what causes the doom feeling or what hormone is produced from this. Has anyone found any articles on this relating to AF? Perhaps it's creating a chemical trigger in much the same way as alcohol and caffeine does.

    I'm waiting for second ablation but wish I could do more to help myself in the meantime.

  • It's called anxiety, and it seems to come with each episode at least in my case. But you can often soothe the feeling of anxiety with deep breathing. It's quite normal, I think.

  • When I was first diagnosed with all of this 5 years ago (and I did get an implanted pacemaker/defibrillator because things got bad) I did get those feelings of doom right away! It was like a set of dominoes falling down with my heart out of whack and also discovering weird things like autoimmune diseases like Sjogren's disease, connective tissue disorder, the arrhythmia s, the cardiomyopathy, heart block and getting used to taking and managing(now the count is:) 20 medications....so I go back to the very first thing I read about from you

    Ads7906...the GP acts like he doesn't know what to do with you. Well he probably doesn't. That's kind of what happened to me 5 years ago too when my dominoes were rapidly falling so fast that my GP didn't know what he was doing so I ended up in ER...knew I was falling fast and got a good GP who referred me to an excellent EP with the answers I needed to survive this long. I never even heard of an EP before, but my new GP was on the ball and got me in before it was too late...I was dropping weight like crazy, and the rheumatologist she referred me to that diagnosed all the autoimmune diseases I apparently have (and they are not pleasant!) prescribed Xanax, which helps with my doom...so all in all I am not only on the most optimal medication regimen I could possibly be on, and I've since transferred to a Cardiologist and EP team (and Rheumatologist) at University of Chicago (just in case) I also go to therapy so that I am mindful of the fact ANYONE in our position deserves respect. We deserve respect not only from our physicians and the staff & nurses at hospitals and doctor's offices but from our family members and and from ourselves. If we are not respecting ourselves for how we are managing our heart conditions, our medications, how we research our AF or other kinds of arrhythmia s that we may have, how we deal with the inevitable emotional aspects of being thrust into this position, how we handle being disrespected sometimes by our healthcare team (unfortunately) or being NOT in our wheelhouse when we must speak with or "confront" our medical team about our symptoms or when we just do not understand why we feel the way we do and it may cause feelings of anxiety at times then we at least deserve to be treated with courtesy. Women would find it interesting to note that they are characterized as have "panic attacks" often in the ER, even when they are having an MI. (www.womenheart.org) It's very well documented that anxiety and depression, whether it's organic, psychological, or physiological...is notoriously comorbid with heart disease! Anyone with constant AF or recurrent AF would feel impatient, preoccupied, nervous, and anxious. Myself included. I'm very excited to try out Koda's websites, because I believe in helping myself, respecting myself, and my boundaries and limits and strengths, and knowing that probably I know more than most of my doctors and therapists! I go to Yoga and Ballet Barre Burn and Cardiac Rehab and I'm not gonna give up. I give you peace and praise how all of us reach out to each other! We have every right to feel the way we do and it doesn't diminish us at all...so Ads7906 please find a really good EP if you haven't already and praise yourself for managing a tough heart condition and standing tall with it. You are a heart hero! Pls keep us posted! Get back to me cuz I CARE!!!! Hugs!

  • Thank you for your kind words it's comforting to know I'm not alone. I'm back to consultant tomorrow so I will be asking to see an EP. And of course keep you all posted

  • I am in permanent AF and get the feeling of doom and gloom. My husband knows when I am like this as I go very quiet, You feel something not good is going to happen and feel very down. I then a little later do have worse than normal attack of AF.

    As my HR is very erratic average of 90 but easily goes upto 130 plus I was told to go to AE when its been at 120/130 for more than a few house. Has to do this twice.

  • I have to say this forum has confused me somewhat when I go by what "my" experts are telling me. I don't really know what to think any more. MY GP and two EP's, one of them one of the top experts in the County have said there is NO increased risk of a heart attack because you have AF . Also they have said that there is no evidence the stroke occurs during AF. So I am not sure where the fear is although I accept I do feel uneasy. They have said that there is an increased risk of a stroke though, but in my case it is relatively low so anti-coagulants will have less effect in terms of reducing the percent risk. i.e. a 50% reduction of a 2% risk is an actual 1% reduction. Conversely if I were a high stroke risk at say 40%, a 50% reduction would give a more significant 20% actual reduction. Add in the risk of a brain bleed and the change in lifestyle and for me it doesn't seem so clean cut a decision.

    A lot of people seem to be full of doom and gloom yet there are millions of people in the UK with AF who seem to lead a happy life either oblivious of their condition or on anti-coagulants and don't worry about it.

  • Stress is a big trigger in PAF, so maybe worrying about it sets it off. I know you can't generalise, but cardiologists see so many patients with severe heart conditions that AF and PAF, the commonest heart problems of all, doesn't seem to overly concern them. My cardiologist said to me one time that with PAF I wouldn't have a heart attack but I was at risk of a stroke. Great choices, eh? I see you are on Sotalol. I was on this for 5 years quite some time ago and my heart rate was so low I felt like a zombie most of the time. I asked to change consultants and he was horrified that I had been prescribed this drug. I think I have seen posts on here saying that Sotalol is not given now. At my last appointment the consultant took me off Flecainide ( 2 x 5mg daily) as my heart rate was a bit slow and put me on Bisoprolol (1 x 1.25mg daily). It seems to be slower than ever! I'm off to my GP next week.

    Keep well and try not to dwell on episodes too much. Easier said than done, I know.

  • Sotalol seems more effective than the bisoporolol for me. when I was on bisop I used to get little breakthrough af episodes. I'm seeing cardiologist tomorrow so I'll see what they want to do with me next

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