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paroxysmal

NLGA profile image
NLGA
30 Replies

I believe I have this form of AF with Heart flutters that give me no pain and occur sometimes 2/3 times daily or weekly . I have never had the 3 types explained to me at the hospital but was refused CV as AF wasn’t present

Are any other members diagnosed with this and if so what are your symptoms amd what treatment are you on

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NLGA profile image
NLGA
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30 Replies
CDreamer profile image
CDreamer

Hi and welcome. May I suggest you visit the AFA website and read as much as you can about AF which presents very differently in every single person. heartrhythmalliance.org/aa/...

A CV is mainly used for those in persistent (AF is present 24/7) AF to see if achieving NSR (Normal Sinus Rhythm) is possible. It is my understanding that CV is not a treatment offered to those with Paroxysmal AF - which is when AF/AFl comes and goes so you self convert back into NSR.

Primary treatment for AF is prophalactic anticoagulation - your doctor should assess your need for anticoagulation by using an algorithm which will take into account your age, other conditions, BP and general fitness. If you are over 65 then anticoagulation is often strongly recommended. Other than that, some doctors tend to focus on rate control using beta blockers, calcium channel blockers and/or antiarrythmic drugs etc - all explained on the website. Know that these drugs are very powerful and often have unwanted affects.

Other treatments are more invasive, such as ablation (mainly successful for paroxysmal AF) and hybrid mini-maze procedures (mainly only offered to those with long term persistent AF).

Those with Paroxysmal AF are often more symptomatic feeling palipitations, breathlessness, sometimes fainting or near fainting, fatigue and a general sense of doom. Personally, at it’s worst, I had all of above and felt like Popeye gazing at Olive as my heart felt as though it was working it’s way out of my chest. I also had pulsatile tittinus - ie I heard every heartbeat very loudly.

Permanent AF is a term used when both you and your doctors agree that you will live with AF without further attempts to achieve NSR.

You will find people on this forum friendly and very knowledgable and happy to share information. Just remember though that we have members from all over the world so terminology sometimes is different, as our access to resources.

Very best wishes - CD.

Lilylui profile image
Lilylui in reply toCDreamer

Sorry jumping on here,I sound like you and hate the heart beat in the ear can I ask how you deal with it and meds you are on please?

CDreamer profile image
CDreamer in reply toLilylui

This may help healthline.com/health/pulsa...

I take no heart meds as contraindicated for other conditions.

In my case the pulse titinus was only when in AF so assumed cause was turbulent blood flow which made sense as BP was all over the place.

CDreamer profile image
CDreamer in reply toLilylui

PS - distraction and meditation to deal with it - there is no pill for titinus. I put earphones on and listened to music or audio books.

Singwell profile image
Singwell in reply toLilylui

Jumping in too. How are you doing?

Lilylui profile image
Lilylui in reply toSingwell

Had 2 bouts of Af and ended up in A&E but okay at min depressed though

Singwell profile image
Singwell in reply toLilylui

Sorry to hear this. It's challenging at fhe beginning. Once you have a few management strategies in place (which might need advice from medics too) it gets easier and life goes on. I still get anxious if I think I might be about to get AF though and have to take myself in hand.

Singwell profile image
Singwell in reply toCDreamer

Oh you describe it so eloquently! Not many talk about the sense of doom but it's real isn't it? And if you let it stay with you I think that's why many of us develop anxiety.

Ppiman profile image
Ppiman in reply toSingwell

I gather the sense of impending doom is brought about by slightly altered blood chemistry brought on by prolonged but mild over-breathing, itself the result of increased anxiety (caused by the altered heart rhythm).

Steve

Singwell profile image
Singwell in reply toPpiman

You're a font of knowledge Steve! I also think that it's because we have a kind of heart brain, similar to a gut brain that sends messages upstream to our brain. Likely these are distress signals when we have AF. Was reading a blog recently (on BHF site I think) that all our main organs have their own internal neurological system. We're just beginning to learn more about them. It kind of makes sense when we talk about listening to our body. Different from thoughts...

Ppiman profile image
Ppiman in reply toSingwell

I didn’t know that but it sounds spot on. I worked in the pharmaceutical industry for many years hence my seeming knowledge - but a little knowledge can be a dangerous thing! 😳

I could do without the heart issues that’s for sure. I have a mixture of very occasional AF, lbbb, wide qrs, and too many ectopic beats for comfort. What causes what I just do not know and asking my doctor leads not very far.

I hope you’re going on okay! I’m hoping the hot weather has finally fizzled out and normal service will be resumed this week.

Steve

Singwell profile image
Singwell in reply toPpiman

Thanks. My beloved Dad was a Professor of Pharmacy back in the day! I'm getting a lot of ectopics at present, which is a bit disturbing as I can feel the PVCs. Supra ventricular ectopics don't bother me so much. It's odd these have started this week so I'm trying to control my anxiety...

Ppiman profile image
Ppiman in reply toSingwell

A dad who was a professor! Wow! ☺️

Snowgirl65 profile image
Snowgirl65 in reply toPpiman

It's a vicious circle, isn't it: Anxiety, overbreathing, sense of doom; anxiety, overbreathing, etc...

Ppiman profile image
Ppiman in reply toSnowgirl65

You said it perfectly. I think often that fear results from lack of confidence that all really is going to be okay.

The strange feeling of “impending doom” is something I don’t get these days. I was intrigued when the cardiologist / EP I saw suggested my past issues with anxiety were likely from my heart all along. That certainly explained a lot of the odd things that have happened to me over the years.

Steve

Snowgirl65 profile image
Snowgirl65 in reply toPpiman

I think a lot has to do with oxygen levels. When I once told my (then) EP that I thought anxiety was triggering my a-fib episodes and mentioned that I hyperventilated when stressed, he claimed that the a-fib itself was causing symptoms similar to anxiety, i.e. hyperventilating, as my heart wasn't pumping correctly. It turned out he was right.

Ppiman profile image
Ppiman in reply toSnowgirl65

That’s exactly what I was told. I wish I’d known that back in the day.

Steve

Snowgirl65 profile image
Snowgirl65 in reply toPpiman

Me too!

NLGA profile image
NLGA in reply toSnowgirl65

I definitely think that was behind my AF and even now I’m not clear of that anxiety

Snowgirl65 profile image
Snowgirl65 in reply toNLGA

I think we know our own bodies, but I guess science has to catch up and give proof.

Singwell profile image
Singwell in reply toPpiman

Dad went into academia late in life. I recall him studying in his 40s so getting a PhD late was a big deal. I made a similar journey starting at 50 but in voice research. I'm quite nerdy and enjoy the clinical side of things. Getting AF made me realise I'd been anxious most of my life. Had myself down ad a worrier but I think I'd probably be classified as hypervigilant by a psychotherapist! Yet we still function don't we? I'm kinda grateful to my AF despite all the trials, because it made me face the anxiety and see it as a thing. I still get it but it doesn't run my life in the background.

Ppiman profile image
Ppiman in reply toSingwell

I suspect we’re rather similar. I took my English degree at 40. Conscientious is the word I like - but not fantastically resilient.

My heart rhythm doesn’t fit the straight “AF” category that some here seem to have. Tonight for example, the Kardia shows bradycardia and PVCs. AF is quite unusual for me now for some reason.

Steve

Singwell profile image
Singwell in reply toSnowgirl65

We have to find something to break the cycle don't we? Walking barefoot around the house helps me, better still in the garden. Or just going outside and moving around in the air - feeling alive - for some reason it always helps.

NLGA profile image
NLGA in reply toSingwell

Walking around the garden during the night helps me

Kennyb1968 profile image
Kennyb1968 in reply toSingwell

You may also find a heightened need to pee when in AFib. It's a vicious circle on the anxiety thing, I would feel the signs of AFib and worry myself into it. You must try to understand that this awful bloody condition is NOT going to kill you. Many people live long and happy lives with AFib. My father is 90 and has lived with AFib for 70+ years during which he had 2 successful careers as a soldier and a teacher, lived all around the world and brought up 5 children (all of whom have AFib). The symptoms can be controlled, you just need to find the solution for you which isn't likely to be exactly the same as it is for someone else. But there will be a solution out there. You will learn to manage and live with this.

Good luck.

Kenny

Singwell profile image
Singwell in reply toKennyb1968

Thank you. I'm managing to enjoy life much more after 2.5 years of it. I think it starting just before a global pandemic that caused worldwide panic also didn't help.

Hilianna profile image
Hilianna

Hi My AF sounds a bit like yours, sporadic, but I also suffer from extreme fatigue, my worst symptom. Someone mentioned ectopic. Are these what happens when the heart rate shoots up high, anything between 100 to 150, and then drops very quickly? I have a fitbit watch and one of these shows as a steep, nearly vertical line which rises and then comes down again sharply. I can usually feel when it happens, altho if it happens in the night, I don't always feel it. Feels v strange.

NLGA profile image
NLGA in reply toHilianna

Sounds like mine I can sit watching tv feel a flutter like a butterfly in my chest and have a 125 hr then another day it doesn’t go above 80 after doing jobs . I think why does this happen I woke in the night last week it was 115 and I was just sleeping

Hilianna profile image
Hilianna

It is all very strange. I can live with all these strange heart issues but find the tiredness symptom v difficult to manage.

NLGA profile image
NLGA in reply toHilianna

During May and June I felt like I was suffocating I couldn’t seem to get air in my lungs or that’s what it felt like mostly at night but at times during the day when I went to hospital again in July this time due to constant phlem in my throat it was discovered I had bacteria in my lungs to this day I don’t know if the breathing issue was this or something with my heart although my echo wasn’t to bad mild MR mildly dilated LVH a inferior wall on the hypokinetic septum but all tubes valves fine . These suffocating episodes are gone now and it was these that I went to A and E for so I don’t know if it’s the Bisoprolol working or the bacteria in my lungs yet in May and June there was no mention of bacteria from the hospital

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