After weaning off of Toprol and feeling sooo much better as a result, I had a lovely day on Saturday socializing with an Art & Nature group at a local park. I was so grateful for the experience of just being out in nature, meeting new people who are kind and lovely, and enjoying the day. I've had a hard time being able to get it together to go out and socialize as much as I'd like in recent months, so I was thrilled simply to feel good and enjoy good company and a beautiful day.
I woke up on Sunday feeing OK; Kardia indicated possible AF. I waited 45 min before taking Flec. I've been taking 100 mg PIP, & episodes stop within 4 hrs. It's been quite a relief to know that there's a way to end them.
My EP suggested that I take 150 mg so as to stop the episodes faster, so this was the first time I tried 150 mg. 5 hrs in, I took another 100 mg, & called the on-call doc as the episode went into hour 11. I cannot recall the last time I had an episode last that long. I became rather depressed & the on-call doc (not my EP) sure didn't help.
This part was actually funny, though. After telling him that at 9 mos post-ablation, I've been having weekly episodes all along, with related financial challenges from not being able to work enough, he tells me I need to get on the schedule for an ablation.
I tell him that there are logistical & financial considerations to be addressed; that it's not as simple as just throw me on the schedule.
He tells me that I don't need to drop the classes I'm teaching cause most people are back to work in 2 days! I burst out laughing...um, it didn't exactly work that way for me the last time & so I know I need to prepare in the event of another failed ablation. His dismissiveness was quite something. Well, if you don't have the ablation right away, you won't be able to work at all!! He's also of the mindset that there is absolutely no way to connect triggers to episodes, that AF has a mind of its own, so dismissed my mention of perhaps having overdone it on Saturday.
So reassuring, this guy...
I followed his direction to not take any more Flec, after listening to him say I shouldn't be on it in the first place because of the toxins in it. Don't you love hearing stuff like that when you feel miserable - and seeing that the docs don't even agree with each other??
Fortunately, the episode ended by 2 am.
I was just doing some research on Flec side effects and it hit me like a ton of bricks.
I think the higher dose of Flec actually made the episode worse!
I'm really sensitive & have had awful reactions to drugs in recent months. Included in the listed side effects of Flecainide are "fast, irregular, racing, or pounding heartbeat or pulse," along with anxiety and depression. Good grief. It makes sense; I cannot recall having an episode like this.
I'm wondering if others have experienced these types of side effects with Flec.
I couldn't think clearly enough yesterday to be able to make this connection, but now it makes sense to me - and reminds me to be exceedingly careful with drugs, doctors, & doses!!
Another adventure in the mental game of AF.
Fortunately, I feel much better now. Mainly I wanted to share about this today partly to get it out of my head as I rest, recover, & move on.
They found flecanide was making my Atrial flutter worse last year, but now it isn't that and it's full blown AF I'm back on it. I can see the depression episodes making sense though.
Have had exactly the same effect. Started at 100 PIP, didn’t really work so was put on 2x50 +100. Things got worse so 2x100 + 100 then the penny dropped. It was the Flecainide making the episodes longer and stronger. Ectopic beats felt like Concordes sonic boom going off in my chest.
Have slowly weaned myself off the tablets again and though I sometimes use 100 as PIP, it doesn’t really work. Am to have another 4 day monitor fitted end of this month.
Di
• in reply to
Di, thanks for this. When I read those side effects, I just knew it. It's helpful to hear from others with similar experiences. I really became depressed about the episode lasting so unusually long. Then today, it's lifted. As have the other symptoms.
This process of connecting the dots - when the brain is actually functioning well when not drugged - does have its horrifying moments. Realizing that these people who are supposed to be helping me, as well-intentioned and trained as they may be, do at times make it all worse. Largely with their dismissiveness and expecting patients to fit neatly into boxes in terms of responses to medications.
The worst experiences I've had this year with AF have come as a result of a doctor (not just EPs) prescribing medication that has made matters much worse. Wow.
My goodness, one must have a backbone and be intrepid in this AF adventure!
Hi not good. Everyone is different , but you may be right that the Flec (additional) made it worse - if the 100 mg normally stops it in 4 hours thats what I would take - it takes 6 hours to get fully into your bloodstream in most cases so the extra 50 mg probably wouldn't speed it up - what you could ask about is why wait 45 mins my cardio says as soon as i am in AF eat and chew (yugh) 2 Flecanaide to get them in your system as fast as you can - but you had better as about that as its very individual and 4 hours is my normal to revert. But do ask about the45 mins.
I’m with you on the side effects of Flecainide and many other meds. ☠️
Seems like good doctors are as hard to find as good auto mechanics. Worth their weight in gold.
I was so fortunate to have a wonderful daughter with medical expertise/connections and excellent health insurance. Even then, it was a long hard journey to feeling better.
The added stress of financial and career considerations are just plain overwhelming. I wish you the very best in recovery and health.
Thanks, PirateJeff. I appreciate your support. Yes, the financial end of it can be overwhelming. If my brain is functioning well, I can make my way through. The combo of feeling like crap, not thinking clearly, seeking help, and then being dismissed - not my favorite! It does tend to clarify things, though, which I will focus on.
Yeah, not being able to function with a clear mind was so frustrating. Thankfully I had excellent, loving care.
I remember I had to take Metropolol for several months after the last ablation and it was not my friend. I threatened everyday to anyone who listened that I would not continue to take it, but I continued...
After 9 episodes in one month, my cardio put me on a daily dose of 200mgs Flecainide only, explaining using PIP (my preference) is a rollercoaster which wouldn't help heart stability. As much as I would love to get off the Flec, I have had no AF and no side effects for 4.5 years. I accept there is likely to be a price to pay for taking the pills and hope to wean myself off before we reach that day.
I had the same advice secondtry. Pip not good better to keep the heart stabilised and when I was on flecainide it was a new lease of life. I was on 50mgs night and morning. Then I was told to stop after my ablation and the palpitations and ectopic beats were horrendous. Waiting for a halter heart monitor now.
Doesn’t sound like a helpful doctor for sure and obviously doesn’t know too much about recovery from ablation or have much empathy. Glad you had a lovely day - this is probably your best medicine and antidote for depression and for stress reduction - the Endorphine effect.
Flecainide as a PIP worked very well for me for some years and I think the usual for use as a PIP was 300mg but then no more than allowed for 48 hours. I had to take my first dose under medical supersvision just to ensure I didn’t react as you usually react with the first dose, if you are going to. Any drug which helps a symptom has the potential to cause the same symptom.
I ended up on 100mg x 2 of daily Flecainide for about 12 months with no consequences and found it a tolerable and very effective drug for AF. Eventually though AF broke through.
Inevitably some drugs suit some whilst not working with others and finding something that works for you is trial and error. Flecainide is considered a ‘dirty’ drug but not as toxic as some of the other drugs like Sotolol. I don’t think there is a drug on the market without affects.
A term associated with a drug which can have toxic and unwanted effects.
I think I took it as a PIP and then daily for about 4-5 years in total and I didn't suffer any noticeable affects, certainly nothing like the symptoms I struggled with from taking Bisoprolol. If you stay on the recommended dose and never exceed the maximum dose of 300 mg daily then there is little risk, certainly much less after affects than a drug like Amiodarone, IMHO.
Everyone reacts very differently though and there is no one fit all solution and every drug needs to be assessed for it's benefits to the possible risks and decide whether or not the benefits outweigh the possible risks.
Thanks, CD. Yes, the lovely day was definitely its own medicine. Since going off Toprol, I have appreciated feeling so much better, more myself, more social, just in a better mood. It's happened a handful of times that in those times of feeling good, I very likely simply overdid it a bit. The challenge there is that in the moment, it doesn't at all feel like overdoing it. When I feel good, I simply want to enjoy life and do things I'm not up to when I'm in an episode.
Never have I heard from a doc what you said: "Any drug which helps a symptom has the potential to cause the same symptom." I say that not to challenge or disagree with you, but to highlight what is most frustrating in dealing with the docs. There is no conversation around the medications - at all. Just take it. No follow up to see about the dosing. No warning about side effects. After telling them, repeatedly, that I am quite sensitive and that a little goes a long way, it's still common to hear some version of "This works fine for most people." With no thought given to those who are in that other group...or who might be in that other group.
So then I find myself here amongst all of you lovely people, learning far more than I ever have from these highly educated, very highly paid docs who practice what amounts to benign neglect.
Since joining the forum, I've been facing this reality in a different way, realizing the full extent of the impact of this behavior on my situation, namely being given drugs or doses of drugs, only to have the symptoms made worse, thinking it's been the AF. I've had to figure it out on my own, through the forum and Dr. Gupta, and bring the information back to these guys.
There is something just crazy about that. Writing about this is helping to grasp the reality of this, as well as helping me arrive at what I will say to my cardio next week and EP the week after.
This is a new level of what I'd describe as an initiation. One must always advocate for oneself, have a backbone, ask questions, be persistent. Lately I have been infuriated by the extra stress and pressure added to the experience that comes from having to research and question and explore every drug they want to give me because I know now that I simply cannot trust them. And when I am feeling drugged and miserable, it's even harder for me to muster the brain power to even do any of that. It's really just ridiculous.
I also have the contrast of working with my acupuncturist. Such a stark contrast it is! I am monitored weekly or bi-weekly to see how I'm progressing. The herbs and dosage are regularly tweaked. I've learned to adjust the dosage a bit myself as I've become more attuned to my body. It's a partnership, a learning experience that's helped me tune into my body. I feel completely safe and respected by this doc. Much of the time lately, he's been working to detox my system from the effects of the drugs.
So this makes it even more challenging to deal with the Western docs, with the quite limited contact, and basically the mindset they bring to the game, which can be quite dismissive. I'm still figuring out how to navigate with them.
Where are the areas that the acupuncture & herbs can't help & so I need drugs? But then where are the drugs actually causing more problems than they are helping? That's the tightrope to walk.
If I've had an episode, my acupuncturist and I always discuss possible triggers; he's of the mind that there is always a trigger. So then talking to the on-call EP, who cut me off when I mentioned probably overdoing it a bit, to go on a rant ridiculing patients who come in with lists of triggers....I just wanted to slap him. I did mention to my EP via email that I didn't appreciate the other guy's dismissiveness. We'll see what happens.
I do hope you get somewhere. I have travelled a similar road. Oh that you could come to our Patient's Day in October - I learned more in that one day than from any doctor I saw.
Keep in touch and if you need to vent - we understand!
Thanks, CD. I'd enjoy learning more about Patient's Day. Are there workshops? I wonder if anything is recorded so that others might "attend" either remotely or after-the-fact by watching videos? Sounds like a wonderful opportunity for learning.
There is such a different culture in this forum as compared to those I explored in the States. I really like that everyone is honest about the challenges, yet optimistic, kind, generous, and helpful.
I do not want to fall into wallowing or whining about any of this, for sure. But being supported in being able to sort through the frustrations on the way to finding good solutions and taking charge of whatever aspects of this adventure that I might be able to is immensely helpful! For this I thank you.
Partly, the experience is continuing education on our health care system here in the States.
My acup. was telling me the other day that in med school in Japan and Korea and I believe China, too, first-year students must study herbal medicine. Pharmacists understand well pharmaceuticals and herbal formulations. The emphasis in the education is to be as non-invasive as possible in treating the patient.
In contrast, he mentioned American physician colleagues who had drug company reps in the med school classes with them. The impact of the companies is huge and I'm sure that this informs the mindset we encounter, even amongst the nicest of docs.
Hi Nella, I always find your posts so interesting to read. If you ever start writing books let me know. The on-call doctor you spoke to didn't have a clue about the reality of AF did he! I guess in his defence he can't be a master of every ailment (I'm being kind today).
Yes, I am one person who shares your experience. Flecainide pills kept me in AF for almost 8 months and I only realised that when I decided to stop taking them a few months ago. My AF nurse rang to check how I was yesterday and I told her the reason I'd stopped taking Flecainide and how I'd been in sinus rhythm ever since. She's told me, that if I have a bad attack of AF, not to take them again without having had an ECG first as they could cause a serious reaction. I could however take the beta blocker Metoprolol which I used to take in a small dose alongside the Flec.
Oh, Jean, you are so sweet! Thank you for your kindness. I appreciate having this place to write about these experiences and hearing from all of you wonderful people. It's having a powerful impact on me and helping me both make sense of these experiences and sort out how I want to handle the docs.
The on-call doc is an EP in a high-volume ablation practice. They specialize in ablation and pride themselves on the thousands they have done. This is the kind of practice we in the States are encouraged to seek out. In defense of the practice on the whole, they have been really quite lovely to deal with. My EP does listen and is kind and doesn't display the arrogance and dismissiveness of this guy. The nurses and others have been kind and compassionate in each interaction. The ablation experience itself really was quite lovely.
This guy has been the worst; he has a particular mindset that I think is rather common.
There is a lot of good in this place, but they do basically ignore educating patients on what to do during the months in between ablations. I've been told that AF has a mind of its own and so it's a waste of time trying to identify any triggers.
Based on what I've learned here & from Dr. Gupta, now I think that's just plain irresponsible. There is a lot to be done that can help to reduce the episodes and the power of them, in my experience. Never mind how disempowering it is for the patient to be told essentially that they are completely powerless in facing AF.
I know I'm not alone, having read so many tales here, in having discovered certain triggers and made related lifestyle changes that have helped matters.
Our bodies change, with time. I see this clearly in the Warfarin dose, Over 20 years ago it was 7mg. Now, having gained a few kg, it is 5.25.
In the early days of flecainide, the doctor told me it would be good to come off it for 2-4 weeks each year. Do this when taking a long summer break.
Another time, I was on it, and the irregularities increased, and I increased the dose, and that made it worse! So I plucked up courage to see the cardiologist, and ate some humble pie. He laughed at my tale. He told me I should have known better. Did I not know that too much flecainide can provoke irregularities and tachycardias? Of course I knew. This is not rocket science. It is clearly stated in the British National Formulary which I have been using for years in order to cross check the doctors. So, the doctor told me reduce or even stop the flecainide, and restart at a very low dosage if I needed to.
From then on, I tried to stay off flecainide, and take the risk with PIP. That worked, just, for one winter. The next winter was a real learning experience. Now, I know that the two major factors to beware of for me are cold weather (less than 20C) and stress. Usually there is a crisis in February. This winter, problems started in November, despite having moved to a centrally heated flat. But, I persisted in using PIP and struggled on until the Spring. I had set myself horrendous work deadlines (to clear the deck) then, just as I finished, the big one.
That was when I sought help because PIP failed, and I ended up going through chemical cardioversion with two high doses of oral Amiodarone, followed a few weeks later by resumption of flecainide.
Could I have prevented the big one? Probably. I could have put myself back on a low dose of flecainide, at least from November to May.
A year ago I noticed that my problems were at night. I reasoned the problems might be caused by a night peak of flecainide. The heart naturally calms down during sleep, so does not need extra help. So I stopped the evening dose. That has worked perfectly for me now for a year. I take just 50mg in the morning. When I noticed I was all nervous at an airport, and I felt the warning signs, my wife persuaded me to take a 25mg supplement, and that worked well. Placebo? Who cares, it worked.
Good points, ILowe. One must really take charge and become attuned to what's working and what's not. You've shown how you've done that.
Some good guidance from the experts at the outset would help, though! Your British National Formulary sounds helpful.
I end up checking trusted sources online for side effects, such as the Mayo Clinic. I'm not sure if we have something similar to your formulary; perhaps our Food and Drug Administration.
I referred to the British National Formulary, since this is what the health workers in Britain all consult. It is dense, is often vague about side effects, and rarely mentions the lab tests you should have regularly/before taking the drug. I particularly like it for giving a summary of the different options for different drugs. That distinguishes it from websites like drugs.com which I also consult regularly.
As for guidance from the experts. There is a whole literature out there on what makes an expert, and how experts interact with non-experts. The problem is that "experts"
1/ often do not take side effects seriously (they rely on coping when it gets bad, and I know people who have almost died because of that),
2/ minimise the effect of small doses, so often over-dose
3/ crucially, they do not know your history. The patient or patient-friend is the expert here.
4/ few are trained to think out of the box.
5/ in Britain, medical experts are often expected to follow "guidelines" so it falls to the patient to disagree.
But, experts have their uses!! I would welcome participation in this forum from a few more, so that the technical side can be better covered.
Whenever I have a new health problem, I usually start with the experts, then slowly start to diverge as I gain expertise. The difficult trick is when to trust an expert, and when to trust myself.
I like what you wrote, ILowe, about experts. Couldn't agree more. I'd add in another flavor of expert to the mix, though. It's been part of my experience.
Experts in Traditional Chinese Medicine and Homeopathy.
What I've experienced with Western docs who strictly follow dosing guidelines and approach me with a strong hit of "this works well for most people" is that, ultimately, they simply don't see me. Not at all. They don't even look to see if I'm there. Just major, major blinders.
That's the problem with "one-size-fits-all/most" approach. I absolutely respect that this is true, that it generally works quite well for them to focus on these broad groups of people for whom their med or dose works fine. They probably do see loads of people who fit into those groups.
But if you're as sensitive as I am, and I know I'm more sensitive than the vast majority of people, just built that way....it becomes terrifying to deal with these people. Because they are looking at me, and I'm not exaggerating, are simply telling me that I, namely my highly sensitive constitution, don't exist or matter. That I'm insignificant. So then prescribing a high dose should be fine. But the impact of those side effects is far stronger on a sensitive person.
I believe it's not out of an intention of being malicious; they have such a rigid concept etched in their brains that they can't see beyond it. It's like talking to cement. Was actually fun to blast through my dermatologist's cement in our verbal jousting match. God love her...she really wanted to get it and ultimately she did.
So when I work with the experts I know in vibrational medicine, they *start* from the place that a lot of Western docs do not/will not acknowledge even exists.
Traditional medicine looked at the whole person. it began with a careful case history. Tests were few and came later.
There is a line of literature on the problem of average. Todd Rose wrote a fascinating, very readable book called "The end of average....". In it he gives some simple biological examples. For instance, Daniels measured ten physical dimensions such as height, sleeve length etc for 4063 pilots, took the average (mean) then included a range: the middle 30%. The expectation was that most pilots would be within the average range on most or all of the dimensions. When the data was crunched, not a single person was within the average range on all ten dimensions. Even more astonishing, if you picked out just three of the ten dimensions, less than 3.5% were within the average range. There was no such thing as the average pilot.
How much more so, patients??
Now, there is a relatively new field of medicine looking into personalised medicine. But when you dig a bit, I think it has been hijacked by the question of genetics.
Flecainide controls he rhythm, not the rate. It can cause high rate in some people. That is why I also took a rate control drug when I was on flecainide. (Diltiazem 200mg in my case.) My afib was always high rate anyway.
Also be aware that flecainide can promote atrial flutter. If your arrhythmia is different are you sure it is afib?
I ask as 9 days after my succesful cryo PVI ablation for afib I developed atrial flutter Which was reentrant and would not stop. The hospital thought it was a recurrence of afib and increased my flecainide dose to try to cardiovert me and it all got worse. The dose change was reversed when they realised it was flutter and I had to have a second ablation for the flutter.
KMRobbo, I suspect that some of what I've experienced isn't actually AF, but perhaps flutter. I know that Kardia, while helpful, isn't as accurate as the internal monitor I used till its battery wore out. (Reveal Linq, by the way; haven't read mention of it on the site, wondering if it's used in the UK).
My EP hasn't discussed flutter vs AF. I will bring this up at my upcoming appointments.
These are the types of questions I would have brought up with my EP on the phone recently, but didn't even know to ask, and he didn't bring it up or dig into the situation. I will be sure to do so in the future.
Nella - its easy to distinguish between Flutter and AF on the Kardia - go to the learning library for examples. Basically AF is an irregular, irregularity with an absence of P wave whilst Afl is a regular, irregularity and looks more saw's teeth. Obviously there are all sorts of other irregularities such as tachycardia, SVT's etc etc but the learning library is a useful guide - of course it isn't a full analysis from an EP - just a guide to possibilities.
How right you are. Dr Sanjay Gupta among others points out that a tiny dose of a betablocker is often prescribed with flecainide, to keep the lid on its tendency to promote problems, which the BNF describes as "pro arrhyrhmic effects" ie
Proarrhythmia is a new or more frequent occurrence of pre-existing arrhythmias, paradoxically precipitated by antiarrhythmic therapy, which means it is a side effect associated with the administration of some existing antiarrhythmic drugs, as well as drugs for other indications.
I read that as potentially provoking irregularities, and increased heart rates.
One thing to keep in mind is that the side effects listed often only relate to a small percent of the population. For me and many others, Flec is a godsend with few or no side effects. Overall, it’s actually considered a relatively safe drug. .
I’ve never quite understood the rationale for taking Flec as a Pill in the Pocket especially for ongoing AF events as I’m told that it may be better to prevent AFIB rather than treat it after the fact.
Regardless, it sounds like you should try to get a second opinion as this doctor is not very helpful. Another ablation may be the right answer but you should at least explore taking a regular (profalactic) albeit lower dose of Flec and see how you do on that. Of course consult with an EP
I've used Flec successfully at a lower dose and will probably continue to do so.
Food for thought -- the comment that it works for most people, while true, isn't so helpful to hear if you happen to land in that group of folks who have challenges with the drug. In my case, I believe it's a dosage matter.
I recently had a rather intense conversation with a dermatologist who'd given me a drug that caused a severe reaction. She kept repeating, over and over again (till I told her to stop!) that this drug works fine for most people with AF. She finally quit saying that and ended up saying that she learned something from the experience.
Also, if at the moment you're having a miserable time as a result of taking the drug, you really don't care that most people are fine with it!
Some drugs are great for some folks and cause misery in others.
I’m sorry you took my comments the wrong way. Folks on this site are honest with their experiences including me. Some things (meds, ablation, deep breathing etc) work for some and not for others. I’ve had two ablation failures and when I read about someone that has suffered with AF and has had a successful and lasting ablation, I don’t take that negatively. I’m actually happy that the ablation worked for them and don’t take offense since mine was a failure. I hope to hear many more happy and successful ablation stories on this site in the future. My comments are meant to be fact, not a basis for putting anyone down including yourself.
Glad to hear that Flec at a lower dose worked for you in the past and hopefully will make you feel better going forward.
I took flec after my first ablation and it made me highly anxious and scary depressed- and it happened fast. It also jacked my heart rate. I had a similar experience with propafenone so am done with both. Known side effects and luckily they don’t affect everyone.
Thanks, Dinodog. That describes my experience with the higher dose of Flec. The emotional swings were the worst.
I really can't thank you and everyone else enough for sharing your experiences with these meds. There is such a sophisticated level of understanding in this community, through experience and study, of how they work.
I'm preparing myself for an appt with my cardio next week and the EP in 2 more weeks. I've been through a huge and at time tumultuous learning curve in recent weeks based on the information I've learned from this forum and Dr. Gupta, none of which had been mentioned to me by either doc.
There's been the trial and error of sorting out the weaning off of Metoprolol (realizing that taking 6.25 mg / day is good for me; that's how sensitive I am, that I notice the difference without it!); the nightmare of the too-high dose of Flec that came with no warning that it can cause the problems we've mentioned. The discovery of vagally mediated AF has been profound. The positive impact on my sleep alone has been enormous.
And in there mixed into the emotional roller coaster of the side effects has been fury about suffering in past months that clearly was caused by being on the wrong meds and wrong doses and simply not being followed closely. My goal is to sort through the rest of that fury before the appts so as to be able to have an intelligent conversation about my discoveries and ask questions.
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