My AF story (well part of it anyway)

[xr1450]

Hi all, I've been on here a few times and thought I would share my AF story. I was diagnosed with IDC (Idiopathic Dialated Cardiomyopathy) around 18 years ago. After around two years I had my first atack of AF which was a shock so off to hospital i did go, lassted about 10 hours and went away. This happened around once a year for a few years and then disapeared for six years, nothing, nada, zip, happy days. I then had two episodes 10 days of each other around two and a half years ago which resulted in two more trips to hospital, then nothing until last June.

Skip forward to March this year, after having a really bad cold/flu/COVID expierience in February I started with persistent bouts of really 'angry' AF and was getting them every few days and they were lasting for anything between one or two and ten hours, I was taken to hospital on three occasions.

I managed to get to see my consultant in the middle of May (It would have been easier to get sit down one to one and have a brew and sticky buns with the Queen)

He managed to arranged for me to have an urgent ablation on the 22nd of June. Seems I'm one of the unlucky ones and the ablation hasn't even put a dent in the AF so I am back on the list to have it again soon, please make it soon.

I am getting AF pretty much every day, it is uncomfortable and random with a wide variance in how long it lasts. Needless to say I am at my wits end and am totally worn out with it all and I needed to vent. There is another part to this that I am not able to tell you right now but needless to say you 'WILL' be shocked when you hear it.

Below is a timeline from the beginning of March this year up to now, ish!

March 2nd woke in AF went away when I got out of bed, duration unknown

March 3rd 3am went into AF lasted (10 hours)

March 11th woke in AF at 5am rang ambulance lasted (5 hours)

April 23rd 8.30pm went into AF lasted until 01.00am (4.5 hours)

May 8th woke at 7.30am in AF then in and out until 10am then constant for (8 hours)

May 17th AF started at 1am lasted (7 hours)

May 23nd AF on and off during early morning, dependent on sitting or standing 5pm AF again lasted (2 hours)

May 24th AF at 1.00am, I rang 111 instead of an ambulance at 3.30 as I was really worried about going to hospital (COVID) but they insisted on calling me an ambulance. The paramedics talked me into going to hospital even though the AF had gone by then. They checked me out and gave me a chest x-ray and blood tests, I was hoping to be admitted to get tests to see why this is happening but cardiology wouldn't admit me so I was sent home. Got home at around 10am and slept for three hours and thirty minutes after I woke I went back into AF which lasted (3.5 hours)

Called 111 later and spoke to the out of hours doctor about changing my medication back to nebivolol safely but got nowhere.

Rang A&E to try and speak to a doctor but the nursing sister in A&E would not help.

May 26th AF 1.00pm lasted (1h 50 minutes)

May 27th woke in AF 9am lasted (3 hours) milder than normal

May 30th AF on and off for around (5 hours)

May 31st *********************(exceptionally good day with no problems)

June 1st AF when moving around after getting up as unsettled as it was on April 30th, on and off all day.

June 3rd Woke with regular ectopics and background AF on and of for around two hours then went into AF (3 hours)

June 6th two bouts of AF lasting around (20 min and 30 mins)

June 7th woke early in the morning in AF lasted about (45 minutes) then stopped. Then started again in the evening at around 9.00pm lasted (2 hours)

June 8th AF started at around 8.30 lasted (5 hours)

June 9th full day with no AF ** missed one dose of sotalol during day

June 10th AF in sleep for unknown period

June 11th woke in AF lasted (10 hours) Changed back to Nebivolol 5mg

June 13th woke at 6.30 am in AF and it was off and on until midday (4 hours)

June 18th AF and really low heart rate (3 hours)

ABLATION June 22nd

Went to bed on the night of ablation at 11.00am and woke up at 12.30am in full AF after only 1.5 hours sleep, this lasted on and off all night until 10.00am, it then settled until around 8.00pm on Tuesday evening when it came back with a vengeance and was very painful, I called an ambulance and was taken to hospital 23 June at about 9.00pm. I reverted to sinus rhythm as they loaded me into the ambulance.

Was sent home around 05.00am the next morning.

Was rushed back to hospital 11.30pm on June 25th serious chest pain in AF possibly AFL with a HR of 210bpm. Bloods were taken and Troponin was found to be high, was admitted to hospital and stayed there until Saturday the 27th June

******************************Stayed AF free 26th June until the 2nd of July....(good times)

July 2nd AF started at 11.00pm lasted (3h 30 minutes)

July 8th AF started at 2.15am and lasted (9h 30 minutes)

July 14th AF started at 9.30pm lasted (2h 50 minutes)

July 17th AF started at 3.45am very briefly

July 17th AF started at 18.45pm and lasted (1h 40 minutes)

July 19th AF started 4.30am and lasted (3h 40 minutes)

July 21st AF started at 3.00am and lasted (2 hours 45 minutes)

July 22nd woke me am with three low intensity short sporadic bursts

July 24th am short fairly low intensity bursts on and off for two hours

July 24th pm three short episodes lasting no more than five minutes each

July 25th AF started at 4.20am lasted (35 minutes)

July 25th AF started at 22.50pm lasted (30 minutes)

July 26th AF at 20.00pm lasted for (20 minutes)

July 27th AF started at 1.30am lasted for (10 minutes)

July 27th AF started at 6.05am lasted (50 minutes)

July 28th AF started at 3.00am lasted (45 minutes)

July 29th three short episodes lasting a couple of minutes

July 30th AF started at 3.50am lasted (1h 30 minutes)

Aug 2nd AF started at 4.50am lasted (1 hour)

Aug 3rd AF started at 2.00am lasted (40 minutes)

Aug 4th AF started at 4.30pm lasted (45 minutes)

Aug 5th several short episodes lasting one or two minutes

Aug 6th AF started at 7.30pm lasted (30 minutes)

Aug 7th AF started at 01.05am (35 minutes)

Aug 8th woke in 10.00am lasted for (15 minutes)

*************(three days of peace)

Aug 11 woke three times with short-lived (lay on left to get rid) AF 7.00am 8.30am 9.45am

Aug 12th 05.10am lasted for (35 minutes)

Aug 13th 7.30am lasted for (50 minutes)

Aug 14th 2.05am lasted (40 minutes)

Aug 16th 2.15am lasted (45 minutes)

*************(three days of just one or two very short bursts)

Aug 19th 9.00pm lasted (35 minutes)

Aug 20th 02.10am lasted (30 minutes)

Aug 21st 00.55am lasted (20 minutes)

************** two days of peace

Aug 23rd 7.50pm lasted (1 hour)

*************Three days with several short sporadic bursts and one 15 minute episode whilst sleeping on the 26th

Aug 27th 8.55pm lasted (35 minutes)

Aug 28th 4.55am lasted (1h 15 minutes)

************* Four days of semi-peace with a few short bursts (several seconds)

Sept 2nd 4.00am lasted (1h 30 minutes)

Sept 3rd 4.55am lasted (50 minutes)

************** peace for a day or two

Sept 6th 3.05am lasted (1h 30 minutes)

Sept 6th 11.30pm lasted (40 minutes)

Sept 7th 7.15am woke up in AF lasted (10 minutes)

Sept 8th 3.55pm lasted (55 minutes)

Sept 9th 11.15pm lasted (30 minutes)

Sept 10th 11.40pm lasted 1h 20 minutes)

Sept 11th started with lots of severe ectopic beats and in and out of AF for short periods. This is the first time I've experienced ectopics since before my ablation. Getting virtually no sleep and chest discomfort

Sept 12th as per yesterday, lots of ectopics when at rest and they are worse lying on my right side than my left.

Sept 13th, same as yesterday, lots of ectopic beats in and out of AF in the evening and early morning though sleep was pretty much undisturbed.

Sept 14th started with irregular beats within one hour of waking which is unusual this progressed to AF (25 minutes) then again in the late evening (30 minutes)

Sept 15 4.00am lasted (60 minutes)

Sept 16th two short episodes in my sleep, went away when I rolled over onto my left side and came back when I rolled back to my right ride. Full AF at 10.30pm lasted (45 minutes) still getting a lot of ectopic beats, big thuds and very uncomfortable/painful

************** two days of relative calm, just a few short bursts lasting a few seconds

Sept 19th 5.00am lasted (1 hour 30 minutes)

Sept 20th 5.40am lasted (25 minutes)

Sept 22nd starting at around 8.00pm I was getting lots of ectopic beats and in and out of AF which was lasting just a minute or two at a time but was persistent until around 3.00am on the 23rd Sept this included a new experience of a very regular run of ectopic beats one straight after the other which I managed to record on the app on my phone.

23rd Sept started at 3.10pm and lasted (40 minutes)

24th Sept had lots of ectopic beats starting around 1.00am culminating in AF at 5.00am which lasted (2.00 hours)

[Hidden]

Pacemaker?

[xr1450 in reply to Hidden]

I'm not sure that would control the AF without the node ablation which would probably be further down the road if another couple of ablations fail..

[Buffafly]

You might be interested in Hammerboy’s post ‘AF and Asthma’. The infection in March seems to have been the trigger. I had a similar experience the year before. Maybe beta blockers are exacerbating your AF. A calcium channel blocker such as diltiazem is a possible alternative. EPs treat what they see before them and are not concerned with triggers etc - maybe they assume other issues will have been dealt with before 💜

[xr1450 in reply to Buffafly]

Thanks, I'll try and find that and take a look..

[CDreamer]

Sounds a not unfamiliar pattern, I certainly resonate with it and more. If you had an infection of any sort it will poke the beast - inflammatory response.

I was diagnosed in 2007 although had odd episodes for probably 10 years prior but they were insignificant and as I bounced back I forgot about them. 2006 was my first significant episode - 36 hours of HR 140+ and not able to stand. Drugs for a few years contained the beast, ablation 2013 and 2nd 2014. AF returned 2017 by which time I developed other conditions which meant I couldn’t take any drugs.

The last treatment options, after all other failing - Pace and Ablate. I had Pacemaker implanted in 2018 and had 2 minor episodes since then - both when I had an infection. Pacemaker has worked so well for me that I cancelled the AV node ablation.

I’m not sure how old you are - but with IDC I would imagine that you would be treated as a priority.

Most of your episodes are relatively short and I would imagine that the concern is the frequency - I found ectopic beats much more disabling than AF in many cases.

You have told your story but not asked a question and I am wondering - is that enough - to sound off? How can we support you?

I think most of us could identify with your frustration about getting to see a doctor but unfortunately AF is not seen as a priority - unless you are very ill - so in these times the availability will be limited - another post this morning about access to doctors.

What are your main concerns? What would you like to happen now?

[xr1450]

"sound off"...............Really?...........that's your take on my post?

I'm sorry if you see it that way

[Buffafly in reply to xr1450]

To be fair, you did say ‘vent’ 🤯 It is usual to ask for advice via other members’ experience of a similar problem or sequence of events or sometimes to ask for sympathy from others who understand. I assumed you were looking for sympathy but also thought I could make a possibly useful suggestion although you didn’t ask for it. Many of us have had or are having 😩similar experiences so can fully sympathise too 💜

[CDreamer in reply to Buffafly]

Took the words right out of my mouth, thanks you Buffafly.

[CDreamer in reply to xr1450]

I was attempting to understand what you were looking for from this forum. My questions are genuine with a sincere desire to help and support - if I can - but am at a loss to know what you want. Best wishes CD.

[Hidden in reply to CDreamer]

Exactly, that’s all most of us try to do and goodness knows, you are better at achieving that than most.......

[xr1450 in reply to CDreamer]

I don't 'want' anything, seems I've mistaken this forum for somewhere you can share your experiences of AF, I do apologise.

I did say I was at my wits end with this and needed to vent so I thought I would do it here where I thought someone would understand, but hey ho, never mind.

[CDreamer in reply to xr1450]

And that’s perfectly fine if that is all you needed to do - vent - we do understand that.

Hoped it helped and please don’t hesitate to post again if the need arises but this forum also has a wealth of experience and informed people who may be able to help with suggestions - hence my questions.

Best wishes

[qp3usavk in reply to CDreamer]

Very supportive comments from you both! I woke up in Afib in late July this year and didn't know what was going on!!! Eventually asked my GP who got me in for an ECG and admitted me to hospital! I have to say I had very qujck and attentive care and treatment. I was offered cardioversion and had my procedure nearly 2 weeks ago. Heart now back in SR so hope it stays that way!!! I am off digoxin now (was on the top dose of that!!) and on 10 mgs of bisoprolol, instead of 15. Just getting bad headaches so don't know if this is a reaction to the med withdrawal? I was very stressed prior to the op so maybe it is that?. Otherwise, I feel great!!!! I am 58 and quite sporty, with no heart conditions.

[Polski in reply to xr1450]

I think people do understand. They just want to help too, if they can.

[Lucymoo]

This must be a difficult one for you to manage, I’m having nearly daily AF periods and try and manage this proactively similar to numerous other members. I am awaiting an ablation and the waiting list is one year, so I am expecting sometime mid 2021.

My longest recorded AF period was 13 hrs but my attitude that works for me is I know the AF is not life threatening more of a discomfortable nuisance. I’ve looked at my diet and identified my triggers now avoid alcohol, chocolate and caffeine and trying to eat a good diet. I get plenty of exercise and walk my dog daily.

I avoid a&e like the plague and fingers crossed have avoided attendance at any a&e with regards to my AF over the last 13 years.

Recently at the age of 67 I was admitted to a&e following a nasty head injury playing netball. Whilst there I was taken into majors due to being in AF with a rather low heart rate for me of 132. My doctors asked if I’d considered cardio version for it, but as I have never attended a&e before for it this was a big not yet, and luckily after a few hours it stopped without any further treatment. I was more worried about a small intra cranial bleed, together with the very large for me haematoma on the back of my head and having to stop my apixaban for 48 hrs - that was far more scary than the AF.

I found distraction suggestions on this site good and try a variety as the AF is not life threatening according to my cardiologist. It may help you to decide what you would like to try to manage your AF and find a technique which helps you.

I hope you find a way forward for you ASAP.

[xr1450 in reply to Lucymoo]

Thanks for the in-depth reply. It seems that AF rears it's head in different ways, what I mean by that is some people get it and it is sort of in the background, I have a friend who is in permanent AF and only knows because he was having chemo and they were checking him out. This doesn't bother him in the slightest and he lives with it with no problems.

The AF I am getting almost daily is the complete opposite, when it starts it's like I have just walked into a hurricane, it's very uncomfortable bordering on painful and I cant move around or it gets worse and at times if I sit still you can physically see my body moving slightly due to the erratic beating of my heart. My resting heart rate is usually 55bpm or so, when in AF I'm between 100 and 140bpm and it has been as high at 215bpm. It disappears as instantly as it appears and the feeling of relief is almost ecstatic..

Maybe this is because I have Cardiomyopathy, I really don't know.

[David1958 in reply to Lucymoo]

AF itself is not life threatening but blood clots are. So hopefully the OP is on blood thinners of some sort. That at least takes the worry of blood clots out of the picture. AF affects all of us differently. Some hardly notice or do not notice when they are in AF. Others are incapacitated when AF strikes. That was me when my first and only AF attack happened. I could not even eat dinner. My wife asked me if I needed to got to the ER. I said yes. I had no idea what was going on. It felt like my heart was trying to jump out of my chest. Lucky for me ablation did work for me after a couple years of drugs with side effects. 9 years and counting with nary a blip out of my heart. Here is hoping that good luck continues.

[xr1450 in reply to David1958]

David, have I got this right, you were given an ablation after one AF attack?!

[David1958 in reply to xr1450]

When I went to the ER they hooked me up to an IV and reverted to sinus by the morning. They wanted to wean me off the IV and gave me a three med cocktail. That went south after one hour. Left the hospital on Flecainide and Metoprolol. I stayed on those meds for two years. I was on the lowest dose for both meds. I did not like the side effects and all indications were pointing towards higher doses of both. I think I used a PIP at least twice during that time. When I talked to my cardiologist, I told him I did not want higher doses of medication. My older brother had gone straight to an ablation two years prior with good results. If I did not want the meds my cardiologist said my only other option was ablation. So that is what I did.

[Lucymoo]

Yes you are very right about it effecting everyone differently, but we all respond to it differently too and working out what helps you to manage yours is specific to you. Mine at times can be a real pain and often I’m very breathless (cannt do hills fast or in one go now) my pulse is frequently 160-180 range and is tiring to say the least. The more frequent they are the longer my naps take but as there’s no cure managing your AF is the key. A lot of the forum members have really researched the vitamins and magnesium or CQ10 for example aspects. We are all different hence your symptoms and impact are different to mine but developing different strategies you feel helps you maybe a way forward.

[xr1450 in reply to Lucymoo]

Funny you should mention Q10, I started taking it around 8 years ago and didn't have a single episode of AF for six years after i started to take it, I still take it but if it was the Q10 that was behind that six year break it's no longer working.

You mention getting breathless and not being able to do hills in one go, I cant walk more than 20 yards on the flat when I'm in AF without it turning painful and having to sit down. I am totally incapacitated with the AF and have to sit still until it passes. The longest I have had it is 16 hours which was a few years ago, the longest since things really went pear shaped in March this year is 10 hours.

I have had it twice today for just under 1 hour and again for 40 minutes..