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Pre afib signs

kocoach profile image
51 Replies

Does anyone else have any pre afib symptoms? I usually get them an hour or so before it appears. My HR shoots up to over 100 for a second and I can feel it in my chest and my HR drops down to normal but I can sense something is going on but HR still around 55-60. Then may 30 to 60 minutes later it hits me like a ton of bricks, breathlessness, upset stomach, light headedness, excess urination, HR over 100/135 and most of all fear. This is happening since I cut my dreaded amiodarone in half from 200mg to 100mg a day going on 3 weeks now. The anxiety just freaks me out when this happens as BP shoots up to 150ish over95ish. My EP said this would happen if I did it. I don't know whether to go back on regular dose and let amiodarone kill me or stay on or even off amiodarone and let the anxiety and stress do it. Any input would be very appreciated. Have a Beautiful Day.

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51 Replies
BobD profile image
BobDVolunteer

Fact . AF won't kill you. (not unless you run a marathon whilst in AF). Yes it is scary but right now your biggest problem is your anxiety so I suggest you seek help in that direction and learn that life goes on , just slightly differently.

kocoach profile image
kocoach in reply toBobD

Thank You BOB. I know you're right but you'd think I was over ptsd after 40 years, but when you live alone everything seems to get magnified into larger than it really is. Thanks again for your reply. Have a Wonderful Day!

No signs at all in my case... I switch from NSR to AF, and back, without noticing anything, just like that (good switch, lol).

kocoach profile image
kocoach in reply to

You're Lucky, I'm like that too, just not all the time and when it hits hard it really get's my attention like it did yesterday. Thank You for reply. Have a Good Day!

Jackiesmith7777 profile image
Jackiesmith7777 in reply to

Same as my husband

mjames1 profile image
mjames1

My canary in the coal mine used to be runs of ectopics where afib usually followed within minutes or hours. Another was heartburn or neck pain. Afib presents so different for all of us.

Even after having afib for over 40 years, each episode always made me anxious. I think that's normal. "Why is it going on longer than usual"? "Will this be the episode that will send me to the A&E?" etc, etc...

You have to get things straightened out about the Amiodarone with your doctor. If you're not tolerating it or it's not doing the job there are other medications and/or ablation. And if you feel you need another opinion, a second medical opinion is always reasonable.

Jim

Autumn_Leaves profile image
Autumn_Leaves in reply tomjames1

Definitely an increase in ectopics can be a signal that an AF episode might occur. That’s my experience anyway.

kocoach profile image
kocoach in reply tomjames1

Thank You Jim, I just emailed my EP to see what he thought of my latest ct-scan for the minimal fibrosis that one of the imaging Drs. noted, to see how bad it is. If it's OK I will start up on 200mg amiodarone again. An emergency Dr. just recently asked if I wanted to be admitted to hospital and put on a different med. as she said sometimes rate control drugs work better than rhythm control for afib. She mentioned metoprolol which I understand is a pretty nasty drug as well. Your information is always appreciated.

plopper profile image
plopper in reply tokocoach

Metoprolol is a beta blocker used for rate control. Beta blockers also can help with anxiety. I've taken metoprolol with little to no side effects. Good luck on your afib journey!

kocoach profile image
kocoach in reply toplopper

Thahnk You it's been a long one.

ozziebob profile image
ozziebob in reply tomjames1

Your mention of "neck pain" as a warning symptom of upcoming AF is familiar to me. In my case, trying to explain it to myself, I refer it to my childhood polio and/or an intermittent "flare-up" of a usually dormant spinal-affecting virus. I then presume the neck pain means that my inflammation levels will be also raised, also an indication of possible AF?

In my case this neck pain is extremely uncomfortable and irritating and endures for many hours, sometimes days, and always "drives me to distraction" because I can't resolve it. I just have to endure till it eases.

So I have concluded that it could well be the increased level of anxiety I induce in myself that is the the more crucial cause of any following AF event, although the actual neck pain and inflammation must also contribute.

But thankfully I seem to have discovered a way to alleviate both the neck pain and the concomitant anxiety by the use of paracetamol as soon as the neck pain symptom begins. Such a relief to discover a way around my life long recurring neck pain.

Jim, do you have any comments on my (faulty?) medical reasoning, or further ideas from your own experience of this neck pain precursor symptom?

Bob

mjames1 profile image
mjames1 in reply toozziebob

In my case the it was neck strain from movement or exercise causing the pain, however the mechanism for triggering afib might be similar in both our cases as they both involve the cervical spine which may trigger changes in the vagus nerve. At one point thinking of seeing a chiropractor. Taking an anti inflammatory like you did makes sense. A muscle relaxant might help as well if strain is involved.

Jim

ozziebob profile image
ozziebob in reply tomjames1

Thanks for your thoughts, especially re cervical spine and vagus nerve. Your comments reminded me that I do have some cervical spine degeneration, so that could perhaps explain some of my long term intermittent neck pain/tension flare-ups. But what came first ... a viral flare-up or the spine degeneration?

Blearyeyed profile image
Blearyeyed

Yes , and in fact I get similar pre event symptoms before a period of my tachycardia and dysautonomia events too.It is all part of the way the autonomic nervous system and it's role in cardiac function and heart regulation is affected as it is also integral to AF and Arrhythmia events.

So it's not uncommon to have the physical feelings of Anxiety with no known cause , or history of Mental Health. Issues like; feeling ill at ease , jittery , having butterflies in the stomach or chest, brain fog, nausea , change in bowel or bladder control, and lightheadedness because your nervous system is beginning to have acute. small issues with maintaining your heart rate and basic messaging for various body functions before the AF finally pops up.

Some people can have feelings like these for short moments for hours, or even days , before a period of AF or other cardiac issue finally kicks off. Even if you check your blood pressure, heart rate and find a Normal Sinus Rythmn on an ECG it's worth being mindful and listening to the warning signs your body is giving you.

Reducing the pace of your activity more and taking some time through the day to regularly relax and do some breathing exercises. Increasing your fluids especially during activity and eating smaller lighter meals. Changing your choice of exercise to less intensive or high cardio options and doing shorter activities instead. These are all worth doing generally but are particularly helpful to introduce if you get signs of malaise and unease prior to your heart events to reduce the severity and duration of the attacks.

The same can occur with many other chronic illnesses too not just cardiac ones.

That's why it is important to really think and establish whether your anxious feelings are being caused by mental health issues or new mental stress stimuli , or are wholly physical symptoms of anxiety which you are confused about feeling because you were otherwise feeling happy and mentally well.

It's worth keeping a diary over a number of months to see if you spot a pattern , both to symptoms prior ,or after, your AF events but also to see if you are doing certain activities or eating certain things before you get these symptoms, or have AF, so that you can adjust how you do those activities or avoid certain triggers.

It's always worth listening to your body as overexerting yourself and your heart when signs occur or during AF events , or "carrying on regardless" really isn't the best remedy or healthiest self care strategy to reduce events or keep consistently well for your heart or body in general .

Take care , keep positive and keep pacing yourself, Bee

Autumn_Leaves profile image
Autumn_Leaves in reply toBlearyeyed

No, this “carry on regardless” approach isn’t self-care at all, especially if someone is very symptomatic. If someone is feeling lightheaded and breathless they shouldn’t just ignore it and continue with what they’re doing.

Blearyeyed profile image
Blearyeyed in reply toAutumn_Leaves

Absolutely, there is plenty of medical research out there proving that over exertion / physical stress from activity , especially during an active cardiac related events , is the opposite activity to what is recommended. It adds more stress on the heart and can cause changes in the hearts structure as well as increasing the chance of cardiovascular disease.

Autumn_Leaves profile image
Autumn_Leaves in reply toBlearyeyed

Absolutely crazy idea that people carry on regardless if they feel dizzy, faint, breathless etc. Not everyone is asymptomatic during an episode of AF. It’s not a personality defect!

kocoach profile image
kocoach in reply toBlearyeyed

Sounds a lot like me only my anxiety amplifies it. Thank You for your information. Have a Great Day.

Autumn_Leaves profile image
Autumn_Leaves in reply tokocoach

It’s difficult not to feel anxious when it’s your heart, but that doesn’t mean that your state of mind is responsible for your AF! Your AF is very real and isn’t caused by anxiety. That said, I’m totally in agreement with Blearyeyed that a daily practice of breathing exercises/ mindfulness/ meditation /relaxation exercises in whatever way that suits you could be very beneficial for both your physical and emotional health. It won’t cure or treat your AF, but it will train you to slip into the parasympathetic state a lot more easily and perhaps your anxiety will lessen overall. Daily practice gets results. (I also need to follow my own advice!) It takes time and self discipline but it’s worth it.

kocoach profile image
kocoach in reply toAutumn_Leaves

I pray almost constantly, doesn't that have the same effect as breathing exercises?

Autumn_Leaves profile image
Autumn_Leaves in reply tokocoach

I don’t know, is my honest answer ! It may well have a calming , meditative effect on the mind, which is a good thing, but you also need to relax the body and control your breathing ie from the diaphragm and at a slow rate. If you learn where your body hold on to tension - which may be in the shoulders or the solar plexus region, or the face, jaw area etc - the physical relaxation part may help you to release it. You could silently pray as you do this.

kocoach profile image
kocoach in reply toAutumn_Leaves

Thank You.

macymoo007 profile image
macymoo007

my only warning is literally a few mins before it starts is I have a feeling of nausea but in my chest not my stomach if that makes sense. I can feel jumps in my hr then bang it shoots up. It’s literally just a few mins before though.

kocoach profile image
kocoach in reply tomacymoo007

Sounds a lot like my symptoms but my nausea is in stomach along with pounding in chest, breathlessness and anxiety. I don't know about you, but it freaks me out. Have a Great Day

Countrydweller2 profile image
Countrydweller2

Such a stressful time for you, and trying to be so brave not upsetting your family when you need their comfort. Feel this big hug for you! When I feel an afib coming on I take a diazapam and bisopolol. Have you tried Bach rescue remedy from health shops and chemists, pop a few drops in some water and sip through the day as you need it to ease your stress. Chat with your chemist about it.

kocoach profile image
kocoach in reply toCountrydweller2

I'll do that. Thank You So Much

MummaSoap profile image
MummaSoap

Hi Kocoach

I’m so sorry to hear you’re having such a difficult time, anxiety and PTSD can cause havoc in so many areas of our lives and there’s no one size fits all solution.

I can’t help with the pre-afib symptoms as I haven’t had an official diagnosis for Afib.

However, I think it could benefit you to explore some techniques to help you combat your anxiety symptoms which may enable you to have more freedom of choice around the medication you need to take.

Having struggled with anxiety for many years, I have a variety of techniques that I use to help me manage my symptoms. If you would be willing to share a bit more about your anxiety symptoms (either here or I’m happy for you to message me directly) then I would be happy to share some techniques that I’ve found beneficial if that would be of interest to you?

I can’t promise an absolute solution but I hope that by sharing my experiences then this may help you too 🙂

Best wishes

Soap 🧼

kocoach profile image
kocoach in reply toMummaSoap

Thank You very much for your reply. I do pray a lot but it appears not enough. I was fine until I was put on amiodarone, Have a Blessed Day.

Jetcat profile image
Jetcat

I’d say bob has put it perfectly to be honest. And In my early months/ years of starting with afib I felt exactly the same as you do now.? The fear and anxiety dread and worry depression was sky high.!!!

It was affecting everything in my life and I thought life is over now and I wasn’t even 50 years old yet.!!!! But as time went on I realised that it wasn’t actually the Afib that was the hardest thing to deal with it was my fears and anxiety that was draining me.

In time It finally sank in that actually it isn’t going to kill me after all and life is a little bit different but not that much. But it took time for my own mind to realise it and that was the worst time for me.?

I’m now mid 50s,still working full time. Going on holidays any chance I can.? Running around after my grandkids.😡and I still get abit of afib. Still get ectopics, and life is good.👍 you’ll get there in the end kocoach. You will get your life back believe me. You have the afib and it’s not nice sometimes, but remember there are some very unfortunate people who are suffering with terminal illnesses etc and are not going to be around to enjoy everything in life we take for granted.

You’ll be ok and you will get there in the end👍

All my very best to you kocoach.

Ron.👍x

frazeej profile image
frazeej in reply toJetcat

Well said!

JimF

Autumn_Leaves profile image
Autumn_Leaves in reply toJetcat

Have you had treatment for AF or is anxiety control responsible for your improvement?

Jetcat profile image
Jetcat in reply toAutumn_Leaves

Hi autumn, I was taking the meds until their effectiveness started to decline unfortunately, but then I was referred to a EP. When I first met him I was a total bag of worry and fear about my condition and he arranged CBT for me asap without me even asking😳!! Iv had health anxiety issues since been a child after losing an eye in a accident at age 8 after getting accidentally stabbed with a fountain pen. so CBT wasn’t new to me because I’d had it before over many years. . but I still attended my sessions and of course was very grateful. But I think time is the answer.?( for me anyway ) It was the only thing that proved to me that actually I wasn’t going to die and that things would get better and life wasn’t over, abecause all the time I was still around and carrying on and moving forward that was the real truth I needed in my head.! I later ended up having 3 pvi ablations but still even now get a bit of afib now and again. I also get plagued with ectopics now and again for up to 2 weeks on end unfortunately too but Iv had these many years before I even started with afib.! Of course if I had a choice I’d rather be free from afib and ectopics but I’m not, so I think to myself that I’m lucky I haven’t got anything really really bad like some other unfortunate people get diagnosed with.? Sorry for a long reply autumn.

Best wishes.

Ron

Autumn_Leaves profile image
Autumn_Leaves in reply toJetcat

That’s quite a journey. As you can probably tell from my reply to KOcoach, I’m very much a believer in having some kind of stress management strategy in place as I very much believe we need to help ourselves switch into the parasympathetic mode or the “rest and digest” mode, as some people call it. Not just for people with AF, but for anyone, with any diagnosis or none at all. Along with movement, sleep and paying attention to our diet. I don’t think there’s one true way to manage our stress, but taking time out every day to meditate or do some breathing/relaxation exercises or similar certainly helps me, but forming the habit and sticking with it is the real challenge.

CBT can be enormously beneficial for some people and although there are apps etc, working with a good practitioner is sometimes necessary, so we should never rule it out if we are offered it. Especially if it’s offered on the NHS, what do you have to lose?

Excellent that your ablations have been helpful in getting your AF to a low level that isn’t too intrusive. I hope it stays that way. Unfortunately AF and ectopics are just a part of life, I accept that too. We just have to hope that nothing is going to come along and upset the equilibrium. .

Jetcat profile image
Jetcat in reply toAutumn_Leaves

Iv no doubt in the future things may change as I get older or it may not..? If things do change regarding AFIB and I’m older I don’t think it would bother me as much because of the fact that I’m older and the older you get the more time takes it’s natural toll on the body.? We all would like to get older and some are lucky enough to get there but my anxiety has always been dying young but I’m passing that young thing now at mid 50s so I’d be well happy if I get to 70 or even 75.

Autumn_Leaves profile image
Autumn_Leaves in reply toJetcat

“The future’s not ours to see” to quote Doris Day 😀

kocoach profile image
kocoach in reply toJetcat

Thank You Ron for your response.

Aegean56 profile image
Aegean56

Totally agree with Bob, getting you anxiety under control is paramount. Meditation, Tai chi, yoga , therapy (CBT) , all can be useful. There are tons of free apps and most paid apps have annual fees of only $50-75. Best of luck !

kocoach profile image
kocoach in reply toAegean56

ThankYou, I do pray a lot.

Aegean56 profile image
Aegean56 in reply tokocoach

CBT tools to control my anxiety included: counting backwards by 3s out loud, reciting name of boys or girls from A-Z. Using sensory calming...lavender ( on the might stand) and peppermint(in my office).

Journaling help me a lot! Writing got things out of my head and off my heart (literally) ....it became my daily mantra. When I look back, I see how far I've come.

I usually get a day or two of unexplained tiredness along with sensitivity in my chest. I can often get a build up of ectopics and then my heart will go into af. Not always but I’m usually warned. Even after an ablation this is the case. Often it will come on while I’m sleeping or woken suddenly.

frazeej profile image
frazeej

Your "pre-afib" symptoms pretty much mirror what I experience. In the past, I would get very anxious and upset (which of course just furthers the afib). Nowadays, I might just silently mutter an "Oh s**t", and carry on. Over time my afib seems to have become less symptomatic, but I think that's more a result of my mental attitude and acceptance than anything else.

I am just recovering (I hope) from a fairly serious lung infection. Of course, here comes an afib attack! Much to my surprise, being concerned with other issues, I pretty much totally ignored the afib, carried on, and it eventually converted to NSR. Afib episodes CAN be as serious (or not) as your mind lets them be!

Listen to all BobD has to say on the issue!

JimF

Snowgirl65 profile image
Snowgirl65

I agree, that living alone, everything tends to get magnified. I saw in your bio that you were previously on Tikosyn (Dofetilide). I was too, and it helped much at the time. Can your doctor change you back to that drug?

kocoach profile image
kocoach in reply toSnowgirl65

I will have to talk to him about that but the reason I was switched from that to amiodarone is it stopped working as it used to, just thankful that it worked very well for 20 years. My EP said amiodarone was a med of last resort. I was asked if I wanted to try metoprolol by an ER DR. but I would have to stay in hospital so I said no. If this is the way it's supposed be until I die ; so be it. Thank You for your reply. Have a Beautiful Day.

Snowgirl65 profile image
Snowgirl65 in reply tokocoach

One last thing kocoach, have to looked into having an ablation? When I changed EPs, and my new EP saw that I was on Dofetilide, he scheduled me for an ablation and took me off the drug. By the way, I had to stay in the hospital for 3 days while getting on Dofetilide in the first place, so maybe a short stay in the hospital to try Metoprolol may not be such a bad thing. There are other options out there as well. Just a thought. Thanks for your very nice comment.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Oh dear it sounds like turmoil to say the least.

I did have rapid and persistent AF @ 186 on Metoprolol H/R and not much better on just Bisoprolol 156.

Then it was suggested that I go to this private H/Specialist. At night regardless of meds my h/r goes down to 47 avg. Metroprolol showed pauses at night.

Now balanced on Diltiazem CCB 120mg AM and Bisoprolol BB 2.5mg PM at night.

110-130 / 69. and 60s Day. Great.

The excessive sweating and having to stop whilst walking on elevation is getting a whole lot better. I can do tasks now. No fatigue on exertion. A high H/R is exhausting.

No more sweating. I can walk further.

It sounds like you need a whole lot of thought for balancing you.

cheri JOY

TM93 profile image
TM93

I get a warning as well. I get what I describe as tension in the back of my throat. I generally start feeling very tired. If I catch the afib before it starts with a 25 or 50 milligram dose of metoprolol, sometimes it does prevent an episode. My usual medication regime is 25 mg a day. I don’t want to take my blood pressure because if it is temporarily going up there is nothing that I can do about it and it would only increase the stress. I also expect metoprolol to address that as well if there is a problem. (Normally my blood pressure is fine)

Cabinessence profile image
Cabinessence

There are studies on Amiodarone which suggest a dose of 100mg is equally effective at controlling Afib symptoms but doesn't cause anything like the same side effects. Sounds like that isn't necessarily the case for everyone, or maybe your stress levels went up subconsciously, knowing you was halving the dose? Surprised you've had such a sudden reaction to the reduction. I'm due to come off it totally next month and been told it'll take around 51 days for it to leave my body. So will still be having an effect until then?

kocoach profile image
kocoach in reply toCabinessence

My EP just put me back on 200mg amiodarone today as I have been in constant afib since reducing it which my EP said would be the case. The latest ct-scan of my chest showed no fibrosis whatsoever as the previous ct-scan two weeks earlier showed minimal fibrosis, go figure. Apparently the amiodarone has not been affecting me as originally thought. Are you coming off of it due to ablation or to go on a different medication? I was offered metoprolol but that's got some bad side effects also. Thank You for your reply and hope you have a Great Day!

Cabinessence profile image
Cabinessence

Hi Ko,

I was put on it for a month before my first and only ablation back in July and the EP said she wanted to keep me on it until she saw me for a follow-up late November. It's the only thing that put me back into NSR. I've now been in NSR solidly ever since the op, apart from one small run of about 3 mins and a few ectopics. The EP wasn't concerned as she said I was still in the blanking period where the scar tissue from the burns is still healing. It only happened last month and my thoughts initially were why had it flared up again, albeit momentarily, so long after the ablation and not earlier when the scars were fresher and offering less protection. But the EP said that is very often the case and they don't know why it does it. I'm now apprehensive as I don't know if it's the Amiodarone keeping me in NSR, or that maybe the ablation worked? Please God!There are horror stories on here about the side effects but equally, there are folk who've been on it for years without seemingly any effects at all. I've been fine with it other than the lesser important one of my thyroid readings having gone up a bit, but it's only 4 months of course.

kocoach profile image
kocoach in reply toCabinessence

Well just pray that your NSR becomes permenant, I know a lot of people from the posts on this say the blanking period can take up to one year. Have a Blessed Day and don't give up Hope!!

Cabinessence profile image
Cabinessence

And you too Kocoach. God bless

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