Here we go again……..!!

[Motov]

After the elation of self converting back to NSR after a full blown episode of everyone’s favourite monster…. Afib, that lasted just over 30 hours, a mere four days later and I’m back in it and now at the same 30ish hour point and feeling dreadful and convincing myself this could be another seven day plus episode?

I decided not to darken A&E’s doors this time as they did nothing last time other than pump me full of Bisoprolol, monitor my BP and send me home when I had a HR of around 90BPM. Three days later I came out of Afib. I figured I could do all that myself from the comfort of my own home!

I’ve had a private cardiologist telephone appointment so far (15 minutes, £150…. Ouch!) and have been waiting nearly a month now for an echocardiogram to determine the structure of my heart with a view to taking Flecainide as a PIP? He said the goal was to try and abate persistent Afib for as long as possible? I chased up that appointment yesterday and they confirmed that due to a cancellation I’d be seen on the 20th November. Still ages away but infinitely quicker than the good old overwhelmed NHS who won’t see me until next March! My GP is as much use as a chocolate fire guard and just tells me to go to A&E! I’m at my wits end here, this keeps happening more regularly and each episode last longer! Just venting on here as I know many have been here before me!

[CDreamer]

Very frustrating for you as my experience was that the initial consultation did a lot to reassure but even in the good old preCOVID days I had a long wait to see NHS cardiologist - who although very kind, wasn’t that helpful. Is the cardiologist you are seeing an EP? I found it was only when I consulted an EP I was given a choices of treatment plans.

[Buffafly]

You carry on venting! I’ve had the same ‘will it ever stop’ and wasted A&E experience (well not entirely,I got an up to date ECG out of it!). Have to say my NHS cardiologist phone call was very helpful but he did have a lot of previous info. Just to help anyone else thinking of splashing out it’s best to wait until you’ve had at least an echo before a private consultation as I don’t think consultant s will prescribe anti arrhythmic meds which can be dangerous drugs without one. Whatever my ECG etc showed was that I cannot safely take any anti arrhythmics except a very undesirable one unless I have a pacemaker so you can see why they have to be careful.

Try to pace yourself if possible, also think if you have anything else going on in your body that may be causing inflammation - that is a sure fire trigger for me, even a small wound in my leg set me off.

Best wishes 💜

[bassets]

Oh dear, sorry you are feeling so low. I hope your cardiologist will be able to help you and you feel much happier soon, but if not you can probably talk to him again via his secretary . I don't like doing this but sometimes you can only get results by making a nuisance of yourself. Hope things get better soon. Best wishes.

[Singwell]

I think you're making the right call to seek private consultancy at this point given NHS overload. Although that pricing is steep. A full hour should be between 250 and 300 exclusive of tests from what I've seen. Although we aren't allowed to give medical advice, I can't help wondering if you'd do better on a regular antiarrhythmic, rather than PiP. Your episodes do seem to be quite extended and that's miserable. Are you against that in the meanwhile since it sounds like you're going for ablation?

[Motov in reply to Singwell]

I’m at the point where I’m willing to try anything! I’m pleased to say my Afib episode finally ended yesterday afternoon but my elation will be short lived as I know another episode is looming in the wings! I don’t seem to have any obvious triggers, I cut out caffeine still happens, stop drinking, still happens? Stress is my best bet but that doesn’t explain why it seems to always start in the early hours of the morning? I try to eat earlier too these days.

It’s the right hand side chest pain I get that accompanies each episode during and after that’s also unpleasant, it’s more of a dull ache that I put down to my heart being under stress? My cardiologist seems to think Flecainide as a PIP approach is the way forward once I’ve had the echocardiogram (another £350!) to check the structure of my heart. Going forward he says that if I still get regular episodes then I’ll need an ablation but I’ll need to sell a kidney to pay for that!

I personally like the idea of being on regular anti arrhythmic drugs if that controls it better but until I get to see him face to face to discuss all the options I’ve just got to keep on sucking it up I guess?

[Buffafly in reply to Motov]

Early hours of the morning? Maybe your heart is slowing down too much - you can get a cheap watch that monitors your heart rate 24/7 to see if that is happening though what you do with that info I don’t know! I use a Xiaomi.

[Singwell in reply to Motov]

Your cardiologist is an Electrophysiologist also?? If not then I think that's something to look into. I appreciate you have heart deformation - that's a bummer - but AF is an electrical problem and it's the EPs who know the most about it. I noticed there's was a comment lower down about one getting higher up the list if you need to go to A and E. Thus is apparently the case. I ended up in hospital last December due to a BP hypo because my electrolytes getting very low after an episode. And my EP told me I'd be top of the list because of that. It was four months in fact. My advice is to do the lifestyle things while your waiting. My hubby is on the Micheal Moseley Blood Sugar fast eating plan and he's done well on it. Moseley's stuff is pretty reliable if you want to lose weight. I'd discuss with your GP. Don't give up - there's a solution that should improve your QOL. you just haven't found it yet.

[Flyer2820]

Hi Motov,Sorry to burst your bubble but I agree with your doctor. My younger brother suffered from af regularly and his doctor was useless. I had been telling him to send for an ambulance for ages but because of the pandemic he was reluctant. Yes you are right they do very little and in my case before my ablation they just kept an eye on me until I was stable and then discharged me. The only thing is , the more you go into hospital, the higher up the list you get for treatment or ablation. It was after a trip to A&E that it was decided that I needed an ablation and I was fast tracked and had an ablation on November 5th 2019. That has seen the end of my af (Thank goodness) My brother eventually sent for an ambulance after a bad illness of af and the ball is now rolling. Remember if you don't go to hospital then they don't know how bad you are suffering and as far as they are concerned someone else needs treatment first.

It may seem pointless but it isn't.

Good luck for the future.

Hope you get it sorted. Bisoprolol did nothing for me. 100mg of flechanide 3 times a day worked but when the cardiologist recommended that I only take 100mg twice a day and 2.5mg of Bisoprolol I went back into af and ended up blue lighted to hospital with bradycardia.

Hang on in there.

Regards Flyer.

[minchern]

Hello and yep been there before and your story sounds very familiar. I have PIP of Flecainide but my episode of AF appeared after contracting pneumonia that was 5 weeks ago and I'm still in AF now. My last attack was 5 years ago. When I went into A&E with pneumonia and rapid heart rate they did not want me to use PIP treatment until I had a Echogram so I'm still waiting, that was October 1st. All I can say is I've used PIP and its worked for me in the past where I took 300mg. Took about 2 hours to work