Pill in Pocket Question: Hi everyone... - Atrial Fibrillati...

Atrial Fibrillation Support

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Pill in Pocket Question

Velobob profile image
43 Replies

Hi everyone- first time poster.

I’m a healthy 53 yo Male with a background in competitive cycling. I had my first episode of AF about 2 yrs ago and was cardioverted at the hospital. Since then I have modified numerous aspects of lifestyle as - cut out alcohol and cut way down caffeine, improved sleep, reduced stress, eliminated intense cardio, and improved diet. For a year and a half I just lived with the the arrhythmias and AF (having an episode every 1-2 months) and used pill in pocket (Propafenone) when needed. I have no structural defects. I am on a list to be assessed for an ablation (3 months and no date set yet).

3 months ago I started on daily Sotalol to address worsening occurrences of arrhythmias and more frequent afib episodes. I was getting about one episode every two months but then it spiked to almost weekly- which my cardiologist felt was too often to be using pill in pocket.

While the Sotalol has helped the loss of an option to use pill in pocket is a major drawback for me as it is not easy to get to Emergency and I have small children. Does anyone know if there are different antiarrhythmic drugs that could still allow for a pill in pocket cardioversion option? I am considering going off the Sotalol as this is causing me great anxiety. Thx in advance for any insights!

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Velobob
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43 Replies
mav7 profile image
mav7

Welcome !

Certainly can understand your frustration and concern.

Is your heart rate/ arrhythmias being controlled by Sotalol ? That is the key. Would not stop Sotalol without doctor's advice. And express your concerns.

Yes, there are other drugs for rhythm control and rate control but the doctor has prescribed what he determines best. We can all describe our personal experiences but each individual is different. Lot of info about AF and rate/rhythm control and types of drugs available on the internet. Others may provide helpful links which I don't have.

Good you are being considered for an ablation. Sounds like you are challenged by family responsibilities but keep a positive attitude. At age 52 you can defeat AF to have only minimal effect on quality of life. Good Luck !

Velobob profile image
Velobob in reply tomav7

Thanks for your response- I am hopeful that I can get this at least to a point where it doesn’t weigh so heavy on my mind and I can enjoy my family time more. It’s quite an adjustment from where I was physically to now. I don’t really have issues with heart rate - I have a low resting HR (mid to low 40s) and it rarely jumps up unexpectedly and if it does I can get it back down quickly. It’s the arrhythmias that give me anxiety as they can lead to AF. The Sotalol has helped but I was hoping the AF would go away (or at least be less frequent) which has not happened. I am beginning to realize though that maybe the Sotalol is working and my AF is just getting worse.

I just got a call back from my cardiologist and will be seeing him tomorrow. I am going to explore other medications. The orher wrinkle is that I had to be cardioverted a week ago so mow I’m on Apixaban and together with the Sotalol I really don’t feel great - tired, achy, foggy.

Dwtstoon profile image
Dwtstoon in reply toVelobob

Sotalol stopped working for me after about 6-7 months. I was then put on Flecainide + a small dose of digoxin in the morning. I'm still riding a roller coaster with AFIb sometimes each day for 3-5 hours - the odd one lasts 12-15 hours. I would say about 15-20 episodes a month. I never go to emergency and have never had a cardioversion. The first few times I went to my Doctor with Afib they just did ECG and said pay attention to it. As long as heart rate stays under 100 while resting in AFib (my normal resting is in the 50s). And generally lower than 130 while walking in AFib, Doc says go to emerg if heart rate is consistently over 150 or it's between 100 -150 and accompanied by chest pain, dizzyness or nausea. Other than that, it's much less stressful to just let it pass. Especially covid times. I'm booked for a Cardiac Ablation on April 6. That's my choice after a 1.5 year roller coaster during Covid busy medical system times. I wasn't racing but trained very hard with a competitive swim club and ran a bit. Also did just a bit too many cocktails that my wife made like a pro. Bam! AFib - Aryythmia at 60 but I know I had it for quite a while. All the best.

BobD profile image
BobDVolunteer

Hi velobob and welcome to the club you didn't want to join.

I guess (hope) it has been explained to you already that it is doubtless the cycling that has caused your AF. Our world is full of people like you! That and other endurance athletes and fighter pilots. (see a trend here?)

Firstly I must stress that we are not medics or medically trained here so can not advise on drugs or treatments other than recount our personal experiences.

Pill in pocket (PIP) regimes tend to be transient as AF is almost always a progressive condition. The more you have the more you will get so at some point either ablation or pemanent AF beckons. I'd chose ablation at your age. I had my first at age 60. The sooner the better for good results.

Sotalol is a strange drug not very popular amongst the EPs (electrophysiologists) I know and has both rate and rhythm control abilities. Propafanone is primarily a rhythm control drug with some slight rate control rolled in. Flecainide is primarily a rhythm control drugs but needs to be taken alongside a beta blocker to prevent possible flutter (high regular rate) which it can promote.

I do also find it strange that you were taking propafanone as a PIP is it is not often used as such. I have used propafanone (Rhythmol) for many years on and off and did for a very short while take it as PIP after long discussion with my electrophysiologist who gave me specific guidance and with whom I have had a relationship for some 17 years. I must stress that this was NOT for AF control but another arrhythmia I subsequently developed after the third successful ablation which stopped my AF in 2008.

May I suggest that you visit Atrial Fibrillation Association website and read till you drop so that you have plenty of knowledge you can use when next you speak to your cardiologist.

Velobob profile image
Velobob in reply toBobD

It’s nice to find this group and get support! I do realize it’s not a medical site but even still it does help to hear people’s perspectives as it gives me more ideas to discuss with my cardiologist. I will visit that site - thx!

Paulbounce profile image
Paulbounce

Hi Vel.

I am also on Sotalol - 80 mg 3 times a day. At the moment it's working. However for a PIP I would go for Flecainide any day of the week. I am not a medic so that's just my personal opinion.

One more thing - Sotalol should not cause you anxiety. If anything it should claim you down. Beta blockers can do this - I wonder if your anxiety is caused by the whole situation ?

One last thing - DON'T come off Sotolol without your doctors say so. This could cause real problems. Please don't just stop without talking to your medic first. It's likey they will reduce it over a few weeks.

You wrote

"I have small children".

On a lighter note - no wonder your stressed heheh.

Serious though - you'll beat it. Overcome this - I know you will. When you feel anxiety think about your young children and the postive example you can show them by overcoming your fear. This will help them and you.

Good luck Vel.

Paul

pottypete1 profile image
pottypete1

We are all different and so is the regime adopted by each EP it seems.

You must discuss your concerns with your doctors, as has been said we are not medically trained here and cannot offer medical advice. The phrase “one man’s meat is another man’s poison” really does ring true in this instance.

For what it is worth, I was taken off Sotolol 30 years ago and have taken Flecainide both regularly and as a pill in the pocket ever since. I also had 7 ablations.

We are really all so different.

Consult your EP.

Pete

Velobob profile image
Velobob in reply topottypete1

Thx for your reply. I’m curious when you say you take Flecainide both regularly and as a pill in the pocket - does that mean if you take Flecainide daily and then if you have an AF episode you take an extra dose to resolve it?

pottypete1 profile image
pottypete1 in reply toVelobob

Yes that is exactly what happens. However there is a maximum total daily dose permissible of 300mg.

It has worked for me on most occasions but on probably 20 occasions over the past 30 years I have had to be electrically cardioverted.

Only to be done following medical guidance.

Pete

Velobob profile image
Velobob

For sure I’m going to follow my Dr’s directions regarding my meds - I’m quite cautious. The anxiety is from the situation especially at bed time if I have a pounding heart as my afib always occurs at night as I sleep. I’ve been tested for sleep apnea (not a fun experience) and I don’t have that. Once I get to sleep I’m a decent sleeper.

pottypete1 profile image
pottypete1

I totally understand what you are saying.

Anxiety really is a known trigger. Yesterday I had a relatively short episode if AF but despite all the things I am aware of regarding stress & AF, I could not help having a panic attack.

After it all settled down I felt so relieved.

Do try your best to use the mantra written by George Harrison - “All things must pass”. Hopefully that will help you.

Pete

saulger profile image
saulger in reply topottypete1

Pete, depends how you interpret "...must pass"...Good luck.

pottypete1 profile image
pottypete1 in reply tosaulger

I have experienced Paroxysmal Atrial Fibrillation for over 30 years and luckily for me each episode ultimately stopped.

Pete

saulger profile image
saulger in reply topottypete1

I understood. I meant that George must've meant "must pass" to the eternal...

Paulbounce profile image
Paulbounce

"Pete wrote

"Do try your best to use the mantra written by George Harrison - “All things must pass”.

I'm in.

Paul

Edit - panic attacks are no fun but they do pass.

cindyrella profile image
cindyrella in reply toPaulbounce

Love the mantra Paulbounce!

BigArnie profile image
BigArnie

Hello, FWIW my cardiologist seems perfectly "happy" that I have been using Flecainide as a PIP for the last nearly three years with a episode rate that varies between zero and three per week, averaging about 1.5 per week over the period as a whole. I believe that others on here may have used it for even longer, but not sure on their episode frequency.

dogsneedwalking profile image
dogsneedwalking

Hello there. I was on Bisoprolol originally but then changed to Sotalol [since November last year]. I also had to have a cardioversion as none of the iv drugs brought down my heartrate to a normal rhythm. I have a low resting pulse 43/45 [I am 64 years old]. Really find it quite restrictive as the AF is breaking through the dose I take [40mg x twice daily]. I can no longer over exert my heart as it starts surging/fluttering so it's still a learning process for me as to how much I can physically do. I had Doctors appointment recently and he spoke about the PIP but just had letter of referral for a Electrocardiograph event recorder so am on waiting list for this. I hope that everything settles down for you and you get your medication balanced.

saulger profile image
saulger

Hello Bob. I also rowed in a boat and on the ergo and maybe overdid it. I started late in life.

My first noticeable AFib exactly four years ago during an indoor race, and diagnosed soon after. I believe I had it before because I had light arrhythmia after hard training.

I tried daily Flecainide 50mg x 2 on its own for some six months and was still getting episodes, so quit the Flecainide and felt better.

Now, two hours before I am going to row I take 100mg Flecainide and 1.25mg Bisoprolol and it's been working for me. I also take the same after I had an altercation or words with the mrs and avoid episodes.

Mine also start at night and I believe that it's a hybrid (vagal and adrenergic combined).

I now row at steady pace, heart around 100bpm. My resting HR is 53 and 90/60 BP.

Mine is a lone AFib and I'm 75. Good luck. Saul

Singwell profile image
Singwell

Sounds like you're a good candidate for an anti arrhythmia medication. I think Solatol is a Beta Blocker- so it's a rate controller? With a good choice of anti arrhythmia med you might stop the AF episodes or take a basic dose + pill in the pocket as needed. I take Flecainide for this purpose. If you take it regularly it has to be partnered by a rate controller as well so you need specialist advice to check if you're suitable. Have you seen an EP yet? They're often more knowledgeable about heart arrhythmia than regular cardiologists.

BigDunc profile image
BigDunc

Hi BobI’m 65 and similar to you have lived my life cycling, running etc and started with AF when I was 47. I have had 2 ablations that never worked for me but a drug called Flecainide 100 mg twice a day worked for me and kept me in Rhythm for 15 years.

I had to stop Flecainide 2 years ago due to some mild coronary artery disease and AF began again on a weekly basis and a vigorous workout always flipped me back to Sinus Rhythm.

I always thought I had Vagal AF as I had a low HR and always went into AF when asleep. After discussing with my EP I’m now on Disopyramide and have not been in AF for over 4 months and even having a few drinks again.

Hope this helps as an Arrythmia drug like Flecainide or Disopyramide might do the trick speak to your Cardiologist

Good luck Big Dunc

secondtry profile image
secondtry

Hi VeloBob

Only from my personal experience......priority is to stop all AF episodes (starting with the blindingly obvious!), as it is a vicious circle more generates more. On first diagnosis (age 60) I was quite fit with a HR below 60 and BP 115/65. My cardiologist started me on 100mgs Flecainide daily and then we agreed we had to up it to medium level dose of 200mgs. He did not favour PIP or giving me anything else with the Flecainide nb this is unusual but has worked very well for 8 yrs. He did not explain not giving me a BB or CB with the Flecainide just saying it would make me feel unwell; I suspect the main danger of developing sudden high heart rate is with those over 70 and other comorbidities.

You sound like you have Lone PAF vagally mediated and it might therefore be easier to identify your AF triggers; if you haven't already read up on the Vagus Nerve here and elsewhere. In particular, reduce stress and wind down slowly before bed e.g. no late night TV crime dramas.

If you are offered ablation, the decision whether to accept becomes quite individual and somewhat arbitrary. I could see the potential of being AF free but for me with the talk of complications, having to have a 2nd ablation likely and no guarantee to be off the drugs, the timing didn't seem right. My decision was based on drugs giving you time to adjust your lifestyle and for the medics to improve their procedures to a higher first time success rate.

Best wishes, hope something in the above helps.

Ecki profile image
Ecki

I'm also on Sotalol, low dose, 20mg twice daily, but I also use it as PIP. Since my ablation in Jan 2020, I've had one episode of AF (triggered by getting COVID, I think), took 40mg of sotalol and it stopped after 3 hours. You could talk to your EP about using sotalol as PIP as well as a daily medication?

Jajarunner profile image
Jajarunner

Hi, can't advice in drugs as I always need cardioversions, but as a fellow fit person, I just wanted to say I know how it feels to get 'struck down' when you have a healthy lifestyle. Blame them dodgy ancestors and their iffy genes!Good luck with getting sorted out and back in action xx

Cos56 profile image
Cos56

HiI started off with a beta blocker which then, after 6 years of no episodes, they became more frequent. My electrophysiologist feels ablation, for me, is the last resort. He prescribed Flecainide 50 mg twice a day, to prevent episodes, along with the beta blocker, which I’ve read is a good match, and also I take Eliquis 5 mg twice a day. It’s working like a charm. Life changing. I’m back to an occasional glass of wine, and exercise, which I was afraid to restart. Someone on the forum told me to start off easy and slowly build and it’s working.

But really, the Flecainide did it. The EP said if the Flec stops working, we can increase the dose. So for me, there are options besides ablation. You could mention it to your doc to see if it’s an option. We are all so different on this journey.

I wish you the best ❤️

Velobob profile image
Velobob in reply toCos56

Thanks!

manabouttown profile image
manabouttown

Hi there, there is the drug flecainide which is frequently used for pill in the pocket regimes.300mg plus 50mg of metoprolol.You should also consider taking a blood thinner like Rivaroxaban.I myself now take 100mg of flecainide daily,plus 20mg of rivaroxaban.

Do also check for things like sleep apnoea and high blood pressure.

Velobob profile image
Velobob in reply tomanabouttown

Thanks- yeah I did the overnight sleep test and it came back negative (ie no sleep apnea). No high blood pressure either but I keep an eye on that. For me it’s all about stress management.

Fibber222 profile image
Fibber222

Hi Velobob, I also take Sotolol (max dose 160mg twice a day). I also have bisoprolol 2.5mg as a PIP which I could take every 8 hrs if needed. It slows the heart rate down.

Velobob profile image
Velobob

Thanks everyone for your responses! I am going in to see my cardiologist this morning so hopefully I leave with a solution that works better for me.

RG72 profile image
RG72

Hi Velobob and all. I have no special medicine knowledge to add, I just wanted to add that I’m both encouraged and a little alarmed at the number of us here with endurance sport backgrounds. It’s great to know that you’re not alone, but seems a little frustrating/disappointing that we’ve all found ourselves in this situation having followed what we thought (and are probably continuously told) we’re healthy pursuits and lifestyles.

I’m only 5 months into this journey and a few med changes (under docs orders) I’m still wrestling with it and what, if any, of my former active life I can reclaim. But, I am weathering the storm and getting back to a new normal. Thanks to all for being so active on this site which I’ve only just tuned in to.

Sorry but glad that you’re all here!

Velobob profile image
Velobob in reply toRG72

I totally agree with your comments- which is why it’s not hard for me to change my behaviour and drastically reduce my workouts. The whole point was to be healthy and clearly at some point they were counterproductive. Makes me really question the whole extreme endurance fad (especially Ironmans - which I did twice). Live snd learn I guess!

seasicksurf profile image
seasicksurf

Hey Velobob,Your story and mine are similar and your path along the AF trail so far, is like mine was. I was the endurance athlete as well. I pushed every workout and every little competition--because I could and I enjoyed it. I was grateful my heart allowed me to push it. Then, at about 58 years of age, my heart started to misfire.

This was about 6 years ago. My AF episodes occurred about every two months. My doctors (US) presented my options (ablation, full-time preventative meds, or PIP). Originally, I thought I could beat it, like most other physical injuries or impediments I had overcome before--so I went for the PIP, which I felt was the least intrusive.

My PIP routine was 50 mg of metoprolol tartrate (fast acting beta blocker) at onset of AF episode to slow heart rate, and then 30 minutes later I'd take 300 mg of flecainide at once. Most every time, 2-3 hours later I'd be back in NSR. However, for me, the flecainide hangover from that high dose (which is the maximum you can take daily), was awful. I'd be a mess for a couple days after--literally feeling like a bad hangover. I'd need to go slow for a few days until most of the drug left my system--flecainide has a long half-life.

Anyway, this is one PIP routine that is effective to restore NSR--or at least it was for me. The hangover is the worst.

If you get the chance, sign up for the ablation. If I had to do over, I would have done it straight away. I finally gave up on PIP as my AF progressed in frequency and quality of life deteriorated. I had an ablation about a year ago. All is well now with rate and rhythm--no AF. Know this however. An ablation is an intrusive procedure on your heart, inducing scarring of the tissue to cut off certain rogue electrical pathways. You don't get a new, better pump. You get your old one back at what feels like about 80%, but the electrical system works. Good luck to you.

Velobob profile image
Velobob in reply toseasicksurf

Thanks for your response. I had the same bad hangover from using Propafenone as a PIP. I am going to go the ablation route ASAP based on everything I’ve read. Thx for the warning as well about losing power (to use a cycling metric) but at this point I’d gladly trade that for stability. I’ve done my fair share of racing and epic rides - I just want to enjoy life with my wife and kids.

Velobob profile image
Velobob

So I saw my cardiologist today and basically he doesn’t want to change my meds but rather try to fast track me to getting an ablation. About an hour after my visit I got a call from the EP office and an appointment for next week so at least now I feel I’m making some progress. Thanks again for all the support and information- it’s really great. I was starting to get pretty depressed about my situation.

Tryfan profile image
Tryfan

Yikes. Join the ex cyclist/endurance/runners/exercise fanatics. It's becoming an ever expanding group. I have Flecainide as PIP. I won't add more as there are many wise words below. I wish you well.

RG72 profile image
RG72 in reply toTryfan

I wonder if anyone has got to the route of the issue here? What is it about endurance sports that are affecting heart rhythm. I imagine within our group we have a variety of connected but different symptoms/outcomes, but are there any studies/theories about what the root cause or link to endurance sports might be?

For me some kind of "cause" would be great to know. In my experience (and possibly some of yours too) in one day I went from 100% fit and healthy with no previous warning signs, blissfully unaware of any heart issues to then be lying on an A&E bed with 30% of my heart beats misfiring. Even in hindsight knowing it was an AF episode, it seems like such a rapid decline/change. Subsequent tests have shown a range of issues (PAF's, PVC's, Tricuspid valve regurgitation, enlarged right atria, ridiculous Cholesterol readings, etc...) but zero symptoms or notice until the storm hit.

Tryfan profile image
Tryfan in reply toRG72

I have often mentioned in these pages. Why researching the very points you so informingly make is not wider known or even carried out. I wonder why PhD students are not using us to understand those concerns you make on behalf of a growing coterie. How much is too much? I think mine all started with the silent killer- stress. Stressful sales job. Looking after my 98 yo Mother in the final months. Combined with long distance cycle rides. I had given up running at this point due to joint issues.I have just heard I also have leaky valves. How serious I don't know. Have just written to GP asking those lifestyle questions. Is activity or over activity the cause.

Best wishes to you on finding a recovery path.

RG72 profile image
RG72 in reply toTryfan

Yes! Another common connection - the impacts of chronic long term stress (e.g. elevated Adrenaline and Cortisone) are reported as possible triggers for several heart issues and high LDL cholesterol. The most notable difference to my 'normal' life in the run up to my AF episodes was an 18 month period of highly increased stress (multiple factors) and despite an otherwise healthy lifestyle and very reasonable (if not perfect) diet, my blood tests showed high LDL Cholesterol alongside heart rhythm problems.

Again - all leaky valves are individual and some can be worse than others. I was worried when initially told, but reassured that certain degrees of leakiness are normal and nothing to be concerned about - hopefully yours are in this range too!

Tryfan profile image
Tryfan in reply toRG72

Thanks if I hear from my GP I'll let you know. I'm going to try and obtain the echocardiogram readings then try and understand what they measure and what the readings mean.At 73, as mentioned, I no longer run. Neither do I do 100 mile rides against the clock. Only cycle recreationaly, though living in N Wales hills are always a constant reminder and still a challenge waiting to be conquered, by bike or foot. Must be something in our make up.

cpalmermn profile image
cpalmermn in reply toRG72

There’s a book about the potential relationship of Afib and endurance sports called The Haywire Heart.

seasicksurf profile image
seasicksurf

Good news Velo. I admire you for your decision.

cpalmermn profile image
cpalmermn

Well, hate to say it, but welcome aboard..?!? Very similar history as yours, endurance sports all my life, Afib struck at 47. With increasing events over next 3 years, my EP put me on Flecainide first, which cut my Afib dramatically. And seemed to have very little side effects other than I felt my max HR was reduced a bit.

However, he felt we could do better with ablation. Had ablation a couple years back, am med free and only a couple episodes since, coincidentally while I had COVID. So, I keep the Flec handy and take as PIP if it strikes. Flec is also a common PIP for folks like us.

I’d highly recommend getting with an EP if you haven’t yet. And find one at a hospital with a sizable EP department.

As far as ablation, it’s improved my overall QOL dramatically, however my low resting HR went from the 50s to 70s. I’ve still pulled a few more Strava PRs since, if that matters….ha. Best of luck!

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