I am a massive wuss

[Peony4575]

Reading others posts makes me realise how much worse others have it. But HR shot up to 127 at lunchtime after feeling dodgy all day . My legs go trembly and don’t feel well doubly frightened by being alone in the house all day and fear I will pass the point of being able to call for help and will be found on the floor . Called a close friend who happened to be in the car nearby and she came for coffee ( decaf of course). Please can anyone help with advice on how you cope alone in these situations . My AF was 180 HR but only had that one episode so far

[Finvola]

Sometimes our body's reaction to a heart wobble makes things feel worse.

When I get runs of skipping and jumping, I lie down and breathe slowly and deeply with my belly muscles, in through the nose to a count of 5 and out again through the nose to a count of 5. It slows the heart and stimulates the vagus nerve and usually settles things for me within ten minutes or so.

Ectopics make my knees wobbly which makes me anxious which make the heart jumpy . . . and on and on. I find the breathing exercise wonderful. If you are somewhere where you cannot lie down, sitting comfortably works too - I once did it in slow-moving traffic!

[Peony4575 in reply to Finvola]

Many thanks for replying to me so quickly . The 5+5 is very easy to remember and I will consciously try that . I keep a lid on the panic because I am desperate not to accelerate things further but thoughts like I won’t be able to get to the front door to let people in probably prevent me lying down. The idea of it happening in traffic is a nightmare . You are a more stoical creature than me and I envy you !

[Peony4575 in reply to Finvola]

Having ectopics and trying the breathing now. Have put Wallander on nothing like a little scandi noir to lower the mood . Think I swallow air when I get ectopics burp causing more ectopics and round we go

[doodle68]

Hello Peony I live alone out in the countryside and have frequent episodes of P-AF (every 7-10 days for 8+hours) . I have really unpleasant symptoms which can be scary and I used to be afraid to go to sleep during an episode.

Now I have a set routine, the moment an episode starts I loosen any tight clothing , lay down and start my slow, deep breathing exercise which helps to calm me and to make sure a good supply of oxygenated blood is getting to my misbehaving heart. Sometimes I fall asleep.

I also use distraction, listening to the radio or TV so I am not thinking about the AF.

[Peony4575 in reply to doodle68]

I seem to be able to do that up to 100bpm or so . I have pulsatile tinnitus and can hear every single heartbeat all the time which is amplified if the heart is pounding . Am sure that it doesn’t help the anxiety . I dread getting into bed because I know I will be woken usually three times by palpitations . Always at more or less the same time . Thank you for trying to help . I do have podcasts I listen to at night and it does help

[doodle68 in reply to Peony4575]

Hi Peony I too have tinnitus and put the radio on (voices not music) to mask the buzzing and my pounding heart .

I used to be very scared during episodes, I am now in my 4th year after diagnosis and have got used to coping 😊 . The symptoms during an episode are horrible and I can only function slowly but I manage .

[Peony4575 in reply to doodle68]

Thank you for kind reply . Both the Bisoprolol and the fact am withdrawing from it are causing the symptoms and intensifying the anxiety . Am so knackered being woken 3 times a night by short runs of tachycardia and basically giving up after the 330-4am and staying awake . The episodes occur at more or less at the same time every night . I do a quick Kardia mobile ecg and make a note as everything is a blur by morning . I do find listening to podcasts helpful for the reasons you state

[CDreamer in reply to Peony4575]

I also had pulsatile tinnitus - ear plugs and audio books - worked so well for me. Any tinnitus is helped by ‘white noise’. You don’t even need to be actively listening but a good book is also distracting so get comfortable, long, slow, deep breaths and patience. Once the fear is dissipated, then the episode will not feel as bad.

[Peony4575 in reply to CDreamer]

Hi and many thanks for your reply . When you said “had” pulsatile tinnitus has it gone? I live in hope !

I have been reading my kindle but as you say it doesn’t help with the noise. I haven’t tried audio books do you listen on your phone or another device .

The challenge for me is to get past the first very strong fight or flight ( in my case flight) response that kicks in with the initial high heart rate . My instincts are to open the front door in case I can’t get to it and call for help as I suddenly feel very isolated . I would dearly love to get over this

[CDreamer in reply to Peony4575]

It’s about managing it, you don’t get over it. There is a reality in your concern about being on your own, at my worst I would call on a small group of dear friends & neighbours & ask if one would mind calling around to sit in the house - just knowing there was someone else in the house really helped as I used to pass out & I needed someone to be able to call for assistance if I couldn’t - so put an emergency plan in place & don’t be afeared of using it.

Pulsaltile tinnitus went after my 1st ablation - but that was SO scary waking up to NOT hearing my heartbeat after 63 years of always hearing it - I really thought I was dead 🤪. My heart was in NSR & BP was stable but I am now left with low level ordinary tinnitus but that’s more to do with being unable to clear my ears & from diving.

I used ear plugs to listen to Audible books (only app doing audio books back in 2010. Radio is ok but somehow the earphones much better.

We all need to find a way of coping & you work things through as you go.

[Peony4575 in reply to CDreamer]

Many thanks that is a brilliant reply . I have been calling a few close friends when HR fast and feeling unwell . Lady opposite me in hospital had been found unconscious. Daughter couldn’t raise her on the phone and called police who broke in . Not reassuring . It makes all the difference having someone in the house precisely because you know there’s someone there to take over if needs must .

I can understand why having your pulsatile tinnitus go would be scary I have often thought that . Much as I hate it I know exactly what is happening to HR . Mine is like a diffuse whooshing across the side of my head rather than inside the ear . Was any explanation given for its disappearance ?

I am at the imaginative stage of thinking what if it happened when I was driving through the tunnel, walking the dog a good way from home . You can’t predict so guess you do have cross your bridges as you come to them and go equipped

[123Abc123]

To begin with, I was very scared so I had an arrangement with a friend that I would send a text every morning to say that I was ok. I also keep a key in the garden so that a friend could get in if nec. There is always the alert system that you wear around your neck if you are really worried.

[Peony4575]

Thank you so much. Hearts doing abnormal stuff is scary no getting away from it. My two best friends who live locally have keys and if something is happening I will text them and ask them to check back on me. Partner is around overnight. You don’t get any advice on these practicalities do you

[Shrek1974]

Hi Peony, I’m in persistent AF and only about two weeks ago had an upset stomach (on the same day I had a visit to my cardiologist to arrange further treatment) which sent my HR high. My Kardia was registering 160+bpm. He wasn’t too concerned on checking my readings & it was back down in the 50’s within the next day.

An important thing he pointed out was that the Kardia software can misread speed when in AF - I tend to get 5-7 close beats, then a gap, then steadier beat, then fast etc etc. I think it concentrates on the clusters of fast beats, pushing the average through the roof. After a simple count up, he pointed out that my 160+bpm reading turned out to be approx 90-100bpm and quite normal whilst fighting off an upset stomach. Please put your mind at ease, have a count up of the beats on the trace and calculate it for yourself to get a “realtime” bpm figure.

Steve

[Peony4575 in reply to Shrek1974]

Thanks Steve that’s a really useful piece of information. Keeping calm enough to count the beats might prove a challenge ! My bout of AF when I went to the hospital they told me it was 180. Not had again so far. Noticing an uptick in HR and Symptoms when my tablet is due ( am weaning off )

[Shrek1974 in reply to Peony4575]

No worries Peony. You shouldn’t need to stay calm to count them (although calm is always good), if you look at your Kardia trace in pdf format after it has finished & count the beats from that you’ll get a more realistic figure when in AF. I’ve left my Kardia on its default settings (30sec trace on mine) so count the beats and multiply by 2 for more realistic bpm. Steve

[Peony4575 in reply to Shrek1974]

Thanks Steve . Will do a trial count when feeling ok . I ve left mine in default settings too

[Bambi65]

The 2 things I always remember when it hits me is:

First, this will not kill me.

And second, have I drank enough water, and did I get enough sleep.

Mine usually, when it hits, runs between 140-190. I have noticed if I walk around for distraction or talk with neighbor, I usually feel so much better. I tend not to pay much attention to it anymore. I use the Kardia to record and just do what I can to ignore it.

Breathing like others have said is also very important. Like the Lamaze breathing for early stages of labor.

Hang in there. Lots of great people with loads of experience here.

[Peony4575 in reply to Bambi65]

Thanks Bambi that is really useful. Had little uptick in HR at lunchtime , not a big one so practiced . Took my ECG, watched my breathing, left message on friends phone ( just communicating seemed to help) paced until it started to come down whilst reading the posts from you good people which really helped . Can’t imagine remaining calm if goes above 140 but baby steps

[Bambi65 in reply to Peony4575]

Ive had 5 years of practicing ignoring my monster. When it shows up, I keep on doing whatever I was doing or wanted to do. As Ive said before; my afib monster and I share one body, but I CONTROL the head. I will not allow it to take over or take away any of my joy.

[Peony4575 in reply to Bambi65]

I could do with having that powerful statement framed ! Very inspirational . Needs to become my mantra. Thanks Bambi ! X

[Chrissy7]

Hi everyone thanks for the info. It’s been several weeks since my episode and visit to ER. I have not had severe symptoms since. Have cut way back on alcohol and walk more... I am afraid “when will it start again” and I spend a few days a week alone (as week as overnight).

I have decided not to take medication since I feel ok- (has anyone noticed that after an episode… It takes a long time to feel normal again. I get tired so much easier and my heart rate does increase a bit more than usual when I’m exercising etc.?). Than it did before my Flutter/AF/PVC episode. At first I was afraid but the doctor said it wouldn’t kill me - so I try to stay close to my phone when I’m alone and always think I will have time to text or call 911 if severe enough.

Going back to cardiologist soon so will see what he says...

Has this ever only happened once to someone?

Question: I don’t mean to sound silly but when you hear about people dying suddenly from heart conditions what are those as compared to what we have? I am reassured by the doctor saying it won’t kill me and that keeps my fear at bay.

I’m back to 18 holes of golf and travelling to remote areas hiking camping etc (but not alone) ... feeling safe as time passes.

[Janith]

Just listen to the inner voice ... it will guide you. (It’s our

Almighty telling you what to do ... but you must listen carefully ...). That’s what l do when l must travel alone to Europe ... to join my husband ... l am terrified to travel across the ocean ... on that long flight alone ... but l just talk to our Almighty the entire way ... it works!!!

[Peony4575]

Thank you for your kind reply Janith. Unfortunately the dominant voice in my head just now is coming from my Amygdala telling me to run like hell and call for an ambulance ! Perhaps if I can soothe that there will be room for other kinder voices

[Bob002]

Best thing you can do is see your Doctor and be evaluated to see if you need to be placed on meds. Especially a blood thinner to control blood clotting which can cause a stroke. Its not afib that will kill you but a blood clot formed during the episode of afib. I had an ablation 5 years ago which totally helped me but that is a personal decision. Go get evaluated, don't take no for an answer. Once the afib is under control and you learn more about it you will have a pretty normal life. Uncontrolled afib is a very scary monster to us all. LOL!

[Peony4575 in reply to Bob002]

Thanks Bob. First thing I did when discharged from hospital was book a private appointment with a cardiologist I trusted . He was very thorough and because I have only had the one episode of AF triggered by another medication he thinks to leave me off drugs until if and when I have another . If I have another then I have to swap the 250mg aspirin I take for a DOAC I can’t remember off the top of my head which one he specified . The episodes I m getting are sinus tachycardia which have something to do with the bisoprolol

[Bob002 in reply to Peony4575]

That's good, Your on the right track. Always think positive it really helps.

[Peony4575 in reply to Bob002]

Many thanks Bob. Am working on that have realised am a negatively thinking person in health scenarios and I need to work on being much more positive . If not life could be severely curtailed by fear

[Paulbounce]

Your not a wuss. There's no bigger wuss than I when it comes down to this afib markey,

Doddle wrote

"Now I have a set routine, the moment an episode starts I loosen any tight clothing , lay down and start my slow, deep breathing exercise which helps to calm me and to make sure a good supply of oxygenated blood is getting to my misbehaving heart. Sometimes I fall asleep.

I also use distraction, listening to the radio or TV so I am not thinking about the AF."

Good advice.

Bambi wrote

"Ive had 5 years of practicing ignoring my monster. When it shows up, I keep on doing whatever I was doing or wanted to do. As Ive said before; my afib monster and I share one body, but I CONTROL the head. I will not allow it to take over or take away any of my joy"

Rocking advice,

Best,

Paul

[Peony4575 in reply to Paulbounce]

Agreed Paul. Can’t be many things more alarming than things going wrong with your heart .

It is great advice and need structure/protocol to know what to do with myself in certain scenarios . Also some kind of scripted positive internal dialogue

[Paulbounce in reply to Peony4575]

For sure Peony. I fully understand where your at - I'm there myself mate.

However we are the luckly ones. There are many people walking about unaware they have the condition - they are at serious risk. At least we know we are getting treatment and our life expectly is unlikley to be affected by afib.

I truely believe in the next 5 years treatment will improve so much and it will 'nearly' find a cure,

Let's see what happens - I think ablations will be a thing of past and new treatnents will have moved on.

I could be totally wrong - or right. Let's see what happens over the next few years. peronally I think it will be very poitive. Let's hope so anyway,

Best,

Paul

[Peony4575 in reply to Paulbounce]

Ha just woken by a few palpitations and read your cheery messsge . Hope you are right Paul. You are very positive !