PAF newbie

[Shopgal67]

hi I’m 55 and recently been diagnosed with PAF although I now recognise I’ve had symptoms for 3 years . Over that period of time it would happen weekly bi weekly and then this last year once a month always in the night . I’m going through the menopause and recently my sleep as been awful and so as my Afib , I’m getting episodes every other day , they usually last about 3 hours . I guess I’m asking if this is common and can stress and lack of sleep make it worse. I’m still slightly in panic mode when it happens as I’m coming to terms with the fact that my heart is acting out ! Thanks in advance for any advice.

[Bingofox007]

Hi, I too had to get my head around a PAF diagnosis and had a lot of support here in those scarey times. Stress can definitely make it worse. Are you getting some menopause support from GP? Mine occurs at night generally, we’re all different but I find lying on my right side helps. Gin is a big trigger factor for my AF, along with the usual ie caffeine, stress etc. Some easy to cut out but stress will come and go at its own will. Take care and keep posting on here, 24/7, there’s always someone posting, we’re never on our own. Take care 🦊x

[Shopgal67 in reply to Bingofox007]

Hi yes I’m on HRT , been on that for 12 months now , I feel sure there is a link but no one is talking about it 🤷🏼‍♀️

[AAJJTt]

Hi, It’s natural to feel nervous or anxious, a diagnosis like this can be daunting.

It took me a while to get my head around it and work out what my life would or could be in the future and basically be a bit more relaxed.

I was a healthy and active person until I had a heart attack (nstemi type2) root cause - undiagnosed and untreated atrial fibrillation. Angiogram with no interventions, discharged with medication and exercise.

For me, this is nearly 5 years old, my arrhythmia is well controlled by some low dose anti rhythm control medication (Flecainide) and I have now been ‘Afib free’ for 3+ years. Post heart attack, I was also left with slight left ventricle dysfunction but this has gone and my heart is ‘structurally normal’ again. I honestly feel that I don’t have any limitations at the moment - I regularly run, climb, cycle and travel.

That said, it wasn’t all easy. The mental ‘battle’ can be just as challenging, if not more than the physical one. Sleepless nights, listening and feeling every lump & bump in my heart rhythm.

In the early years, despite my Afib being well controlled with medication, ectopics did trouble me. I did suffer badly from ‘ectopic storms’, which drove me ‘mad’, robbing me of rest. Anxiety just enforced a negative feedback loop that descended into more ectopics. They were investigated by my cardiologist, the burden was actually not that high and he wasn’t overly concerned but it was affecting my QoL. In his opinion, the anxiety was the catalyst. I turned to a course of cognitive behaviour therapy and for a period, an evening sedative. This worked for me, it broke the cycle and it all settled down.

I also feel that exercise was key to my current position, as well, both in recovery from the heart attack and Afib stability. After hospital discharge I was put into my local cardiac rehab program and continue to regularly attend. Admittedly, I do push myself a little bit but it has always been with the agreement and guidance of the medical professionals around me.

Afib is a condition I have but I am determined not to let it define the rest of my life. As you will see from this forum and others like it, everyone’s experience is different and one approach/solution doesn’t fit everyone. I would just say, work with your doctor and cardiologist to find the right one for you and always discuss your worries and concerns.

Keep posting and asking questions here, there is a wealth of information and a supportive community. I would also recommend the AF Association forum too.

Best

A, male, 57

[Shopgal67 in reply to AAJJTt]

Oh thank you so much , you are really inspiring, i have always been fit and healthy so this was a blow I can’t imagine the strength you have mentally and physically to overcome this and not let it ruin your life ! I am still in the gym 4 days a week and I’ve made lifestyle changes to help , my next challenge is see about getting some medication. I also suffer with ectopic heart beats and it’s hard to tell the difference sometimes. You’ve made me feel so much more positive and I wish you continued good health.

[AAJJTt in reply to Shopgal67]

Hi, thanks, I don’t think I can accept such praise.

Afib is a complicated condition and the clinical presentation is diverse.

My episodes were random, maybe a couple a week (still not entirely sure, how I missed them prior to my heart attack). They were quite distinct, high heart rate, irregular with RVR causing the telltale fluttering in my chest. Usually my heart automatically synced into NSR after 3-4 hours. My Afib has a ‘vagal tone’ with it commonly happening late evening / early morning - ectopic beats were usually its ’siren call’.

However immediately after diagnosis I was put on Flecainide (rhythm control), Bisolprol Fumarate (rate control) and Edoxaban (anticoagulant). The last 2 have subsequently been removed. It will depend on your circumstances but I would certainly discuss with your doctor or cardiologist if medication is an appropriate treatment path for you. They do help reduce some of the risks associated with this condition.

Given my current stability and fitness/health level, the topic up for discussion at my next consultation is moving from daily Flecainide to PiP only. For me, Flecainide has been a wonderful solution. I have had no ill affects that I’m aware of and have been very stable. I must admit I will go into the next conversation about removing it with some trepidation; I rather like the status quo. Part of me thinks can I maintain NSR without it but I on the other hand, I don’t fancy having more episodes because I’m currently ‘Afib free’ albeit in chemical cardioversion.

Distinguishing between Afib and ectopics can be tricky at first. I think it just takes a bit of time to figure out your own patterns; it is unique. I also use some technology too - the Kardiamobile 6L is a mini ECG monitor that connects to a smartphone or tablet. I have usually found the determination of Kardiamobile to be accurate where Afib is concerned. That said, to date, any episodes have been very distinct and I really don’t need a Kardia reading to know I am having an episode. I haven’t had an episode for a while now, however, I still use the Kardiamobile occasionally as control, just to check, especially if I feel any different. Experience has led me to be confident in the device. It doesn’t have a default determination for ectopics but it is possible to see and figure them out on the trace. One caveat is they can be a ‘double edged sword’ and create worry, just see them as a tool.

It will take some time to adjust and it’s easy, well …easier for me to say now but try not to worry. Stress is a vicious cycle and it only aggravates this situation. It took me a while but being able to control and rationalise yourself out of the anxiety really helps.

Best A

[Shopgal67 in reply to AAJJTt]

sound advice, thank you very much . Mine seem to be during the rest & digest cycle , thankfully I’m ok when exercising which is vital for my mental health as much as physical. Good luck with the PIP

[AAJJTt]

I know it’s ’early days’ for you but try to remain optimistic. If you can exercise that is a great start. I totally agree mental wellbeing is just important.

I saw you posted on the other forum too and a good response.