Waking in afib & first time PIP experience, love to hear experiences of others...

[sunlovah]

Summary-Diagnosed 14 months ago, 6 episodes since all cardioverted. Taking apixaban only, couldn't tolerate beta blocker, adizem lowered HR too much. On PFA list.

Five out of six episodes of Afib on waking, the most recent being last Thursday, the sixth being the first, happened while exercising,unknowingly, with shingles and h pylori. Waking in AF every time , this must point to something? My stomach is healing from Gastritis which I suspect is not helping.

Also, last episode on Thursday, PIP of flecainide taken for the first time as prescribed by Cardiologist. Took 50mg if didn't work take another after 30 mins. If not in NSR go to A &E. (EP I saw stated a different dose= 50mg every half hour up to 300mg only)), went with Cardios as he prescribed). Anyway, PIP didn't work, ended up with another cardioversion, getting fed up now, although quite liking the anesthetic now!

I am waiting for arythmia Clinic to phone me back ref plan going forward, I'm wondering if PIP dose was high enough,

Interested to hear similar experiences and how anyone resolved things.

Not good when you're starting to be on first name terms with A & E staff. Just want my life back....

[Bagrat]

I have only ever had 3 protracted episodes of AF all more than 10 yrs ago. Cardioverted once. Armsfull of drugs to no effect twice!! then reverted an hour or so later but was told spontaneously not the meds. I'm now 80 and am still taking Flecainide twice a day every day. Any episodes I notice last between five if I can lie down and breathe slowly and 15 mins if I'm out and about or driving. No faintness, chest pain, just an awareness.

[JudiHalf]

Just wondered how long you are in AF before you are cardioverted? I have had PAF for about 10 years, many episodes but have never had a cardioversion or taken medication to get back into sinus rhythm, I guess I must be lucky to always self revert, longest episode was about 12 hours, I couldn’t take beta blockers and was never offered flecainide.

Now have a pacemaker and have only had one episode in 10 months.

[sunlovah in reply to JudiHalf]

'Just wondered how long you are in AF before you are cardioverted? '......the first time last year as I was new to it all and not on thinner, I had to wait 8 weeks . During that time I started off on Bisoprolol (couldn't function)then on to Nebivolol then changed to Diltizem- this slowed me down /breathless walking upstairs even in NSR felt much better when stopped .I stayed Diltizem until about a month after cardioversion. But all through, the 8 weeks I did not revert back. The other 5 times since I wake up in Afib then go to A & E between 9-11, they cardiovert me about 16.00 and still in Afib it seems to be stubborn. I go to A & E early as aware of sorting it back asap.

[JudiHalf in reply to sunlovah]

Oh I can see why you need the cardioversions, has anyone suggested an ablation? I was offered one but declined and had pacemaker and possibly ablation as well but I’m not keen!

[sunlovah in reply to JudiHalf]

I'm on the list for PFA. Hoping it will help...I hate this feeling of living with a sword hanging over my head, life is on hold, I want it back. Felt a bit better with the PIP, but that didn't work, unless Cardio ups the dose.

[Alphakiwi in reply to JudiHalf]

I had a pacemaker now for 3 years. 5 weeks after it was inplanted i was to have the av node ablated but it was thought that i woulld get by with drugs. It was my intolerance drugs that led to the pm a d so i have been so miserable on an arsenal of drugs tried. Ive had enough. I will be talking to my gp tomorrow so an appointment to my cardiologist can be made. I want her to revisit the idea of av node ablation. At 82 im prepared to give it a go despite it being ireversable. I want qol now hopefully i wont need drugs and will be able to excersise again.

[reinaway in reply to Alphakiwi]

I had the AV Node ablation in 2022 and thought about not having the actual ablation after I had had the Pacemaker implanted. However I knew that it had already taken me a couple of years to even go this far I went the whole hog and had the node ablated because I knew I wouldn't have the nerve to go back later and do it. It's been the best thing I've done and I've had no AF since then and am off all drugs accept anticoagulant and blood pressure. Time is against me at 86 you see!

[Alphakiwi in reply to reinaway]

Thanks Reinaway. Ive been a very active individhual now since my early teens in sports especially cycling. Havent been able to realitically touch a bike for 2 years. Itcomes fro. Getting to short breathed under effort and not being able to take any cold rides .Diagnosed with aflutter was cardooverted the put on various meds which knocked me around even more so was given a pacemaker prior to av node ablation. Then i was passed over to a closer cardiologist here in NZ. who said no ablation needed now and started me on another drug run. Its nevet solved as i am now in permanent af they say and iam having a terible time especially at nighit with ppitations and big heart thumps . Im going to see my doc soon with virw to reviewing the node ablation again.

What was the reason you were node ablated ? Thanks for your welcome reply. Colin.

[reinaway in reply to Alphakiwi]

That's awful for you now. I have had PAF for many years and always managed it with drugs but during time it became worse and worse longer and longer episodes with terrible chest pain until I realised that because time was running out for me my only course was to take the P&A route even though it is irreversible. It was a gamble and I have been lucky and do not feel any discomfort. now. You still have AF but you don't feel it as the atria are separated in feeling from the ventricles so the pacemaker controls their rate. Hence no mad jigs! Good luck if you are suitable for the procedure

[mjames1]

I'm wondering if PIP dose was high enough

Probably not. Some like myself may covert with only 100mg of PIP Flecainide, but many need more.

That said, I can think of a couple of reasons why your cardiologist played it so conservative:

1) You're not on a nodal blocking agent like a beta blocker or Diltiazem. These are often taken right before the Flecainide to prevent dangerous arrhythmia's like 1:1 Flutter.

2) The cardilogist knows something about the condition of your heart your ep doesn't, therefore is only comfortable with a low dose.

Have either of your doctors discussed Diltiazem as an alternative to a beta blocker? In general, Diltiazem should not lower your resting heart rate like a beta blocker while affording the same nodal blocking protection. This should allow you to take a higher dose of Flecainide safely.

Also, given the frequency of episodes and the upcoming ablation, daily Flecainide and Diltiazem is also an option you might discuss. That way hopefully you will just stay out of afib and not have to go through the PIP conversion process.

Last point, PIP Flecainide often takes 2-4 hours to work, based on personal experience and what I've read on forums like this. So going to the A&E after only an hour is really not giving it much chance to kick in.

Jim

[sunlovah in reply to mjames1]

'1) You're not on a nodal blocking agent like a beta blocker or Diltiazem.'....

I have been on Adizem XL/ Diltiazem it slowed my HR down too much, ok if I was exercising but couldn't tear round all day to keep rate up, breathless going upstairs on that, so I stopped it(Clinic knew). I did ask Cardio if I needed to take a beta blocker as well with Flec PIP he said 'no'. I could cope with one as a PIP Nebivolol was better than Bisoprolol.

2) The cardiologist knows something about the condition of your heart your ep doesn't,

the Ep and Cardio were both 'mates' at the same hospital. The Cardio referred me to that EP initially for an ablation, EP would have had all the same info as Cardio. Initially the Cardio advised me to take Nebivolol as a PIP, which I knew wouldn't work (see above comment) but I went through the motions, it didn't! So I asked for Flecainide as fed up going to A & E. I took PIP at 8.15 then 8.45 am 50 mg both times, then hospital at 11.00 am.. Hospital converted me at 15.30 last time, they said that it should've kicked in by then. A second EP who is doing my PFA , described me as being paroxysmal persistent...great! It seems when I go, I go, it's stubborn, I have felt myself flip out a couple of times during the day very briefly, that seems to go back to NSR , but not when I wake in AF, any ideas on that?

Episodes so far been about ever 2-3 .5 months.

[mjames1 in reply to sunlovah]

You still only had 100mg of Flecainide in your system. For many, that may not be enough. Here in the US, we use short acting Diltiazem tabs, which in your case could be taken just prior to taking the Flec and discontinued right after. My understanding is that you only have the longer acting formulation, Whether it's safe or not for you to take more than 100mg of Flecainide without a nodal blocking agent is beyond my pay grade, but the lower than optimum dose is probably why you didn't convert.

Jim

[sunlovah in reply to mjames1]

PS. Feeliing my Gastritis is not helping matters.

[baba in reply to mjames1]

“Diltiazem should not lower your resting heart rate like a beta blocker while affording the same nodal blocking protection”

Personal experience , it can. Reaction to drugs are very individual.

[mjames1 in reply to baba]

Yes, you're absolutely correct. we all react differently to these drugs. However, studies show that in most cases diltiazem has a little effect on resting heart rate. That was also the case with me. Very effective in lowering my heart rate while in a fib. Also lowered it about 10 beats while exercising. But had no effect on my resting heart rate while and normal rhythm.

Jim

[sunlovah in reply to mjames1]

Yes, it made exercising easier, but sluggy otherwise. Felt better when I stopped it

[mjames1 in reply to sunlovah]

I'm actually on daily diltiazem right now for non-a fib related reasons. I do think I feel a little more tired, but my resting heart rate hasn't changed. Exercise heart rate may be 5 to 10 bpm lower. Not crazy about being on any drug however I tolerate this a lot better than beta blockers.

Jim

[Alphakiwi in reply to mjames1]

Jim im on diltiazem 120mg and verapamil as pip and i find myself breathing heavily a nd feeling totten when walking easily up a slight hill

[sunlovah in reply to Alphakiwi]

That's how I felt on diltiazem

[JOY2THEWORLD49 in reply to Alphakiwi]

Hi

Both Diltiazem and Verapamil are CCBs.

Not sure why! 2!

Diltiazem AM 180mg (1/2 dose) in 2 hours brought my h/rate down to 51 in 2 hrs!

Diltiazem AM 120mg moderate rate med brought my h/rate down to 86-96. But over the following at 11 months and losing 3kg it came down further to 60s day and I feel much improved.

Night rate avg ALWAYS 47 regardless of meds but I take Diltiazem AM.

Verapamil has a RISK side effect list. Beware.

BB and CCB must be separated and NOT taken at the same time.

cheri JOY. 75. (NZ)

[Alphakiwi in reply to JOY2THEWORLD49]

What is BB and CCB, Joy ?

[JOY2THEWORLD49 in reply to Alphakiwi]

Hi

BBs bock Adrenalin to your heart - Beta Blockers. e.g Metoprolol, Bisoprolol etc

CCB block Calcium to your heart - Calcium Channel Blockers. Diltiazem, Verapamil.

You are correct Alphakiwi.

Then there are ACE blockers which if you have Hypertension are given like Inhibrace? or Lopressor.

Then there are others....Blockers and they are all heart specific.

cheri JOY

[Alphakiwi in reply to JOY2THEWORLD49]

Just thought about it BB is bera blocker CCB is calcium channel blocker. Got it.Diltazem and Verapamil are CCB

[Deepbreath27]

i was originally prescribed 200 mg of Flcainude as a PIP which converts me in 2 hours. Never with any other medication. Now on 50mg twice a day as episodes became more frequent. This regimen also with no beta blocker, started on anticoagulants 6 weeks ago as having an ablation on Wednesday , even though daily Flecanide has stopped my AF all this year. Perhaps a single 200mg dose would help you

[sunlovah in reply to Deepbreath27]

Yes, I was thinking along the lines of an increase in flecainide, just need to speak to someone now, that's the difficult bit. Nice to hear of someone else who didn'thave a beta blocker, how close were your episodes when you went on a daily pill? Cardiologist strikes me as the cautious type, not a bad thing. But I hate going to hospital all the time . Has taken nearly a year to get the PIP at my request as well, NHS is broken. Good luck with ablation, what type are you having?

[Deepbreath27 in reply to sunlovah]

I was getting weekly episodes, always late evening or during sleep, which woke me up. I was reluctant but has been a miracle . However dont want to spend the next 20 odd years on Flecanide

[sunlovah in reply to Deepbreath27]

I feel the same.

[Vonnegut]

The PIP dose of Flecainde I was first prescribed (by an EP we saw privately when the lowest dose of Bisoprolol proved too much for me to take daily) was 100mg with one of the Bisoprolols if my heart rate was over 140 twenty minutes after taking the Flecainide which it only rarely was. Episodes never lasted longer than a few hours (tracked with my Kardia) and now that I take the Flecainide regularly (100mg twice daily) I have not had an episode for over 15 months and that one was when I tested positive for covid with no other symptoms, ended soon as usual with an extra PIP. Hope you find what works for you.

[sunlovah in reply to Vonnegut]

Thank you. Getting to speak to someone is the difficult bit...

Any flecainide side effects?

[Vonnegut in reply to sunlovah]

Possibly adds to the fatigue I have anyway (but I am 80 now and had many active years until this struck) and might mess up my digestion a bit too but, as we know, though doctors don’t seem to, we are all different

[sunlovah in reply to Vonnegut]

PS...do you have to pay a monthly subscription to use Kardia 6L?

[Vonnegut in reply to sunlovah]

No but I did need to buy a second one as I used the first one quite a lot! I only had to pay once for an interpretation of an “unclassified” reading that turned out to be AF so I got a refund!!! It was very useful at the start but I rarely use it now as my heart behaves well on the medication but sometimes interested friends have a go on it!

[JOY2THEWORLD49]

Hi

I presume you have had an ECHO of your heart. And a ECG and possibly a 24hr heart monitor before cardioversion and anti-arryhmnic med Flecainide?

I take CCB Diltiazem 120mg AM for heart rate but in 2019 I was hospitalized for Stroke with rapid and persistence AF H/Rate.

With H/Rate at over 200 I was given Metoprolol against my Will and struggled for 2 years 3 months on it with a change to bisoprolol still uncontrolled /rate and pauses at night. Day 186 and dropped to 156. Night 47avge regardless of med.

BP and H/Rate rise in morning. Try to cover that by taking meds at night.

I take 2.5 Bisprolol PM for BP control.

cheri jOY. 75 (NZ)

[sunlovah in reply to JOY2THEWORLD49]

Yes, had Angio, echo and ECG before starting Flecainide, I have asked about a monitor.

[108cat]

I've had Afib since December 22 and it's always at night or early hours. My cardio says it's the 'vagal type Afib' when the resting HR is low and ectopics crop up and trigger AF .. You'll find that a Sanjay Gupta video describes the two types of Afib, night due to low HR and day due to exercise etc.

You mention gastric issues. I have a hiatus hernia which my cardio thinks is triggering Af so something like that might be relevant for you, another Sanjay Gupta video describes the proximity of stomach and heart and the stomach can put physical pressure on the back of the heart and trigger AF ..

Because of low resting HR and asthma I can't do beta blockers, and in any case my cardiologist says to slow the heart more would be counter productive (for the vagal type AF) ... I only have an anticoagulant Edoxaban and Flecainide PIP.

Afib happens about once a month but more recently short episodes not hours long. Kardia very helpful to tell me if I'm in 'possible' Afib or not ..

Yes I feel side effects from Flecainide ... tachycardia (possible flutter?) for some days after I've taken it. I tend to react to drugs and prefer to use other tactics like deep breathing, drinking cold water to control mind and heart. Touch wood it works more often than not. If not I take 50mg Flecainide then another 50mg after about 15 minutes if it's not working. I'm fortunate that the 100mg usually works after about 30 minutes.

Completely understand when you say 'I want my life back' ...

[sunlovah in reply to 108cat]

I have mentioned that I suspect the Gastritis could be causing Afib problems, but Doctors don't seem to want to join up the dots, but deal with their own part of the body, not liase with each other, it's like pulling teeth! Hopefully get stomach issue sorted, then tackle sleep study, then head for ablation. This last year has been taken over by all this..........

[Dollcollector]

I was prescribed 300 mg of flecanide as a pip which put me back into n. s. r. within half an hour. When l tried 150mg the 2nd time it didn't work.

[Singwell]

Using Flecainide as a PiP varies with individuals. Age, weight and I'd guess general levels of fitness all.play a part. Cardiologists tend to be very cautious about dosage. As an example, I'm 67, female and 53 kilos. I'm.also very sensitive to pharmacological products. So for me, 150mg over the space of 2-3 hours has always been enough to see off an episode. Post ablation I've occasionally taken 50 and it's gone within 20 minutes. It does sound as though your other health issues are triggering the AF - shingles and H Pylori plus the gastritis. Hopefully once these are sorted you can get to a more stable place.

BTW I too was told up to 300 mg within 24 hours but never needed that much.

[Nugger]

Been cardioverted in hospital 3 times but read on here how to do it using 300mg flec + 10mg bisop, worked a treat,2 weeks later did it again & been OK now for 4 years 👍

[Madscientist16]

I can't comment on your medication, but I have two observations from your post. 1. AF in the middle of the night or upon waking can indicate sleep apnea, a well know cause for AF. Have you tracked your sleep by fitness watch or a sleep study? 2. Are you taking a proton pump inhibitor medication for your gastritis? These meds deplete calcium and magnesium with long term use. Long term use is considered more than a month or two. The mineral deficiencies can affect the heart. I was on a PPI for gastritis for 8 months and then had my first AF episode. I was not told that these meds could cause those deficiencies then, unlike they are now. I believe these meds caused my AF. Please speak to your medical professional if you believe these may relate to you.

[sunlovah in reply to Madscientist16]

Thanks for your reply,I'm ahead of you by months...On list for sleep study at my request, spoke to GP today asked to expedite it. Not taking PPI 's I'm aware of the side effects, don't like them, plus they made my stomach worse. I have changed diet a lot to high PH and started taking Calcium as reduced Dairy a lot. I asked GP is I needed to take Vit K2 with calcium they said 'no', but I understood that is was best to take it, I will check with a Pharmacist, not much faith in GP's lately.

If I think to how stomach is now from 6 months ago, it's better and I'm able to eat more, have lost a lot of weight all down to I believe ...malabsorption/reduced appetite/stomach healing from post anti bio treatment and H Pylori, something I don't feel that the Medical Profession take seriously, it's a horrible , painful debilitating condition which I will be glad to see the back of in time....hopefully