is this too many?

[Tilly1957]

I have just worked out that since I was prescribed Verapamil, middle of June 2023, as a Pip, I have had 12 Af episodes when I have taken the pip (which sorts me out) I know I have had shorter af episodes since being on nebivolol, not reaching a high rate - I think the highest has been 138, maybe 142 - before being on nebivolol it used to go up to as high as 184 (very uncomfortable) It takes me 3- 4 days to get back to normal. Also, I am aware of it building up before it starts for 2-3 days before hand.

my question is, is it worth speaking to my gp about, is it normal, should I leave well enough alone? A I expecting too much to think meds and lifestyle changes will minimise the af episodes? I know there are also little rubs if af that I don’t take a pip for.

I know before people have advised it’s about quality of life. I find it disruptive and debilitating, I want to be referred back to a ep/cardiologist to talk with, as the af nurse and gp are not specialists. I haven’t seen a cardiologist since I was first diagnosed.

So in 220 days there are 36 days of af/recovering, when I have taken a pip. And more when not taken pip. Plus it’s only recently I noticed I was getting af without it going over 100… still erratic, so still damaging/dangerous? Any advice, or just general comments, gratefully received x

Edit: pip : pill in the pocket to take when an Af episode starts

[doodle68]

Hello Tilly what are you using as a PIP ?

I take Nebivolol 5mg daily and extra as a PIP, it reduces my HR by about 10 points but does nothing else.

I am in P-AF for up to 5 days at a time with 2 days off. My heart rate is between 148/70 in AF but usually high so I am back on giving daily Flecainide another go . It does nothing for my P-AF and increases my symptoms but I am giving it a try . I am still taking an extra Nebivolol as a PIP so that is most days now.

I can't take Flecainide as a PIP now because my episodes are too frequent and last time I tried it when they were less frequent nothing happened .

My EP doesn't seem unduly concerned about my HR or long episodes but I am on the list for Ablation having previously refused one because my quality of life was ok then.

[Tilly1957 in reply to doodle68]

in my one and only trip to a & e for af (strongly advised by a paramedic friend when I just happened to mention I was in af with a hr going up to just over 180 - sge says a & e NOW! But I cooked my dinner first, no way was I waiting in a & e without having eaten!) but by the time I got there it had started to calm down, the staff were brilliant and it was border line whether they kept me in or not. At 10 to midnight I was discharged with verapamil as a pip (I have intolerances to the excipients in loads of meds and they were checking stuff out) I know it’s unusual as a pip, but it works for me. Only ever had to take 1 x

[doodle68 in reply to Tilly1957]

Hi Tilly , you could speak to your GP I have to be dying to speak to mine.

Verapamil is a Calcium-channel blocker and I know some people take it regularly with a beta blocker. whatever if it helps you that is all that matters.

I have done the 'lifestyle and medication ' thing religiously for 6 years and think it may have slowed down the progression of my AF but as many here say 'AF begets AF' and it has now caught up with me.

Wishing you well Tilly ...

[Tilly1957]

yes, I will try, but it’s like a Brian Rix farce trying to get an an appointment with ours 🤣 and I have fibromyalgia, so most days by the time I remember I was going to ring, it’s too late any way. I just keep my head down and do my own thing most of the time. When my pension kicks in, I may try and go private. I haven’t seen a cardiologist since first diagnosed!

[doodle68]

Hi Tilly good job we can laugh 😆

After a bout of severe pain in my side last year and a visit to a wonderful private Physiotherapist who got me moving again (a 3 month wait for NHS and I literally could not move ) an x ray showed severe arthritis in my spine and hips. I was told in a telephone GP appointment I need to see an orthopaedic surgeon but there is a 55 week wait and they won't be able to do much anyway. So breathless with asthma and AF I get on the floor somehow and do my exercises every day to stay mobile.

Wishing you well ....

[Tilly1957 in reply to doodle68]

I have decided I am getting decrepit now, old age snuck up on me all in one go - but as you say, it’s a good job we can laugh. Yes, getting on the floor and up again for exercises is something worthy of a you tube video but if I don’t do the exercises I become stiffer, less flexible and more pain - oh joy 🤗

[Rhea11 in reply to Tilly1957]

Since I think in pictures .. I can not nòt giggle about your happenings here ☝😇 .. I am 77 and can relate. I hope you'll find a 'cure' soon. I'm on Flecainide 50mg twice a day. Often it helps - sometimes it doesn't. Oh well, still here smiling 😉

[Tilly1957 in reply to Rhea11]

Glad it made you giggle! 🤗

[mjames1]

12 episodes in how many days? And what medication are you using as PIP?

[Tilly1957 in reply to mjames1]

morning, I am taking verapamil as a pip. over 220 days there are 36 days affected by af - the episode itself and a couple of days after recovering from the effects of it (always exhausted afterwards) With hindsight, there is probably a couple of days leading up to an episode when I feel off . I must admit, it’s controlled better than prior to this combination of betablocker & pip. And this year has been more stressful than most as we have had to survive on one dwp pension, until mine kicks in next month.

[mjames1 in reply to Tilly1957]

I can't say what's right for you, but the afib burden you speak of would be too much for me. Both your daily beta blocker and Verapamil do not have very strong anti-arrhythmic properties and therefore are mostly for rate control. My guess is that the PIP Verapamil, simply lowers your rate in afib and then you cardiovert naturally. That's what I used to do when I used another calcium channel blocker (diltiazem) as a PIP.

If you're not seeing an ep, now is the time. Options include switching to a robust daily anti-arrhythmic, if medically cleared, such as Flecainide, or having an ablation. Of course, there's lifestyle changes, but I assume you have done as much in that area by now as you are willing to do.

As you know, afib tends to be progressive, and you want to do as much as possible to avoid going into persistent and then long-term persistent afib. At that point, your options of treating afib successfully decrease.

Jim

[Buffafly]

I take diltiazem, another calcium channel blocker, all the time. It does have a small preventative effect and keeps my heartrate from going too high during an episode. That, in combo with an BP med keeps my AF well under control. Obviously your regime is not effective so you are entitled to be referred to a cardiologist or preferably an EP but you’ll have to be determined!

[Tilly1957 in reply to Buffafly]

thank you, Buffafly. Are the Af episodes that still stay in a lower rate of beats still , when only peaks below 100, as damaging as those that shoot up to the 180’s?

[Buffafly in reply to Tilly1957]

I don’t know for sure, but considering that the aim of meds is to keep rate below 100 I would think not.

[Ossie7]

Morning Tilly , my thoughts are that you need to see a specialist and push for a referral from your GP , as hard as that is . The longer the AF becomes more frequent , the more episodes you will get with the risk of it becoming persistent . Many of us on this site have had to see a cardiologist privately in the first instance to then get added to NHS list for further intervention . Best of luck .

[Tilly1957 in reply to Ossie7]

thank you, Ossie7. Yes, a private consultation is something I am thinking of when our finances improve with my pension starting next month.

[Rubymurray25]

Incredible to think you haven't seen a cardiologist yet. I think it is fair to say our condition and needs change as our body also changes, that it certainly the issue in my case over the past 9 years with the different meds I have been on, before and after my 2 ablations.

From my experience it appears an echocardiogram and a 7 day monitor seem to be the basic requirements for a cardiologist to get a better understanding in conjunction with bloods . I would push hard for these via your Doctor as a referral ( my latest ones were done with a 4 month period ) ! Once we were able to email our Doctors surgery, that ended when they must have been bombarded with emails, then there was the phone but always so hard to get through and now we have " Engage and Consult " , you put your issues on an electronic form and it is normally dealt with the same day if deemed urgent or 3 days call back if not so urgent. Maybe I am lucky with how our surgery operates? Wishing you well and hope you get sorted quickly. I use 300 flecainide ( tested in hospital first ) as my PIP ( success rate 70% ) and take Dronedarone as my main medication.

[Tilly1957 in reply to Rubymurray25]

Hi, Rubymurray25, my pip works brilliantly when I have to take it - and I do that as soon as I know I am in af. The betablocker (nebivolol) is keeping my blood pressure within a good range with minimal side effects. I saw a cardiologist (5years ish) ago). when I wore a holter monitor for 7 days. It picked up one 30seconds episode and, because of my history of a TIA a couple of years before that, I was straight onto anti coags and a beta blocker. Yes, I need to push to get referred again. Trouble is , it’s now 8.10am and too late to get into the queue for an appointment today. But I will push .

[Rubymurray25 in reply to Tilly1957]

I broke the system for my wife by handwriting a letter and putting through the Doctor's surgery, I know they don't particularly like receiving letters , but it does mean it will be addressed and saves the almighty frustration of not getting through on the phone. My wife is waiting to see the consultant at hospital following 6 months of chemo but I simply can't get through to find out when she needs her second follow up blood test. The chemo ward has said it needs to come from the consultant and not doctors , so tomorrow I will be dropping off a letter instead of keep trying to get through to the consultants secretary ( who are brilliant if you can get them ) . I know they are understaffed and also the staff have to service two hospitals!! Keep pushing.

[Tilly1957 in reply to Rubymurray25]

good idea, thank you x

[secondtry]

My cardiologist pretty sure would advise daily dose rather than PIP. If funds allow, definitely recommend a private consultation with a cardiologist.

[Tilly1957 in reply to secondtry]

I take nebivolol daily, and I tolerate it well (many meds I don’t) and it keeps my bp well managed. The verapamil is just for af - I know I shouldn't take it daily with nebivolol. It’s a combination that works, although I guess the af is progressing as it is breaking through more often. I will see if I can get referred back to the guy I saw originally - he inspired trust in me.

[Buffafly in reply to Tilly1957]

Nebivolol is not just for BP, it is supposed to prevent AF attacks! Why can’t you take both - question for a cardiologist. When I had a problem with swollen ankles my GP wrote to a cardiologist for me, yours could do the same. Only problem with that is that the message is liable to get scrambled - I was prescribed Flecainide (which I shouldn’t take) to prevent AF whereas my problem was that in hot weather my heart struggled and then went into AF so I needed to get rid of the fluid somehow. Flecainide still in a drawer 🙄

[Tilly1957 in reply to Buffafly]

yes, my gp said it should also help minimise af episodes. Sorry, I should have said I shouldn’t take the two together, not can’t. Apparently carful monitoring is required as bp could be lowered too much. I can’t recall if that is just with nebivolol or all beta blockers.

[Buffafly in reply to Tilly1957]

Both those meds lower BP so coming out of an episode you could feel bad with too low blood pressure.

[Fullofheart]

Bless you, I would definitely push for a referral. You sound very cheery but I'm guessing beneath that it's getting you down. Be your own advocate and ask for what you should be receiving anyway..... an opportunity to talk with a specialist about your life impacting heart condition. Good luck!

[Tilly1957 in reply to Fullofheart]

thank you x

[Singwell]

12 episodes in how long? But main thing is- how much does it interfere with your life? I'm still working, so for me I wanted the ablation even though I had 6-8 episodes a year. Like you, always felt rough for 1-2 days after as well. Couldn't work during an AF event. Some can. Ask to be referred to an EP. Or short cut by paying once for one in your area.v

[Tilly1957 in reply to Singwell]

morning, Singwell. I think it was you who had said it’s about quality of life to me before. 12 episodes when I have taken a pip since mid June last year. I think I also get little short episodes randomly, quite frequently, which seems to settle quickly. These make me feel uncomfortable, but not like full blown af when rate keeps going high. I have also just been diagnosed with fibromyalgia (after 8 years!) plus am in crutches with a painful arthritic knee that keeps giving away. I am almost housebound at the moment (not too bad when it’s this cold!) waiting to see orthopaedic guy. Luckily, I have supportive family and meditate etc to help manage stress levels! But yes, I think it’s time to see someone other than at the surgery. I don’t want to progressively get worse then be told it’s too late for ablation! I am sensitive to meds and feel settled with what I am taking, apart from the af breaking through.

[ian16527 in reply to Tilly1957]

I am much the same as you Tilly, as I can usually tell when an episode is coming on (not always though).

It now takes me a week to get over one, with my chest aching and hurting on movement and short of breath a little. This has been going on for 12 years but I've had 4 episodes since December.

Went for my loop recorder check yesterday and Ive had 8 since July, the longest 13 hours, the shortest 4 hours. This is with taking Flec 100mg as a PIP.

Bisoprolol does not control the rate when in AF.

I am on my 3rd Cardiologist, and she has referred me to an EP at last who I see next month.

Phone your GP, and they should follow the NICE guidelines, ECG, Bloods and holter (mine do anyway). It was only through my last Holter that I was refered again as my HR drops to the high 30's when I am asleep.

[Buffafly]

When you do see a cardiologist - which as Ian says you are entitled to - be sure you have a (short) list of questions and know what result you are looking for and why.

[Tilly1957 in reply to Buffafly]

thank you - is it getting worse, can I /would I benefit from an ablation/what state is my heart in - I want reduced breakthrough episodes !

[BlueINR]

I do not know what a pip is either. Any bothersome activity with your heart should be discussed with your doctor ASAP. I would call today to schedule an appointment and let it be known what is going on with you. Sounds like the meds you're taking for afib are not working, and your doctor needs to know that so either they can be changed or another form of treatment can be discussed.

[Tilly1957 in reply to BlueINR]

thank you. Pip is a pill in the pocket, to be taken when af kicks in