FLECAINIDE: first dose begins at home or hospital?

[Bon-Bon]

How prevalent is it for some paitents to be prescribed Flecainide for PVC's by their doctors / cardiologists and told to go home and take their first dose and I'll see you this time next year, as I was told; instead, of having the patient admitted for hospital or clinical observation / testing in order to see how their body responds to it first?

In my case, I declined the Flecainide for various reasons.

Bon-Bon

[Richarddidaskos]

So sorry to hear all that you've been through Mick. I have only had my condition ( Lone Paroxysmal Atrial Fibrillation) for 3 months and it's been a bloody scary ride!  As a teacher trying to get colleagues to understand that 10 se ones ago my heart was in agin and now it's fine is jolly difficult. I am rather lucky being in England with our NhS, thus all the treatment is free. I had another attack today (only had 1 in the past week....not bad) but whatever tablets I take it causes not particularly pleasant side- effects. I have lost about. Month's worth of memory from taking flecainide, amongst numerous other side-effects such as dizziness, tiredness, fatigue and losing my train of thought mid-sentence. As a teacher that's really embarrassing!  Anyway, to cut a long story short I had a month off work and then changed over to atenolol. Now atenolol doesn't stop my afibs but reduced my heart rate a massive amount. I am meeting my cardiologist tomorrow and am quite sure that he wants to perform ablation. CAn anyone tell me if it's a wise thing to do?  It won't cost me anything and would be performed at Papworth Hospital in England, the world's leading heart surgery hospital, and would be performed using the technique where they will go up a vein in my groin and ablate the node without invasive surgery. But still the whole idea of surgery, having never even broken a bone in my life, scares me to bits!  Please please please could someone get back to me. It is SO NiCE to know that there are others out there who I can at least talk to. I often wonder whether I am going crazy or not!!,

[Robkuhn]

Yes do it. Its relatively minor as a laser is used to kill the nerve causing all the problems.. They will first map all the electrical impulses  in order to understand which nerve missing fires. I have had friends that it changed their lives. No more worry about over doin it a little, no more avoiding minor stressors. I understand your situation , as I get afib 2-3 times a week. I just got outta hospital today after suffering Angina attack w my afib. They want me to try Flecainide to control the arrythmia.  I've been beggin for an ablasion  but here in the states you cure a patient and you go broke cuz no one is payin ya anymore. Plus pharmicutical companies wont invit you to an all inclusive week in the Mediterranean next year if you are curing the patients and not selling their drugs.

[mickm720]

You're all very smart to be researching your meds.  I am 59 and was put on flecainide for Afib in July 2008 in a hospital.  At that time I was given a chemical stress test before they started the flecainide.  I don't remember the details very well, sorry.

On January 16th, 2010, I basically dropped dead!  Sudden cardiac arrest!  If it had not been for the man next to me knowing CPR and starting immediately, I would not be here today.

I have seen "sudden cardiac arrest" listed as a possible side-effect of flecainide.  Side effect????  So far the doctors have expressed surprise that my arteries could have become so blocked in a year and a half.  It appears that flecainide is a dangerous drug when you have blockages.  IF THAT IS THE CASE, THEN I THINK THEY SHOULD DO MORE THAN A STRESS TEST TO DETERMINE HOW BLOCKED YOUR ARTERIES ARE.

They immediately took me off of flecainide and I needed quadruple bypass surgery.  I am extremely fortunate to be here and have fully recovered now.

I am going to ask the doctors more but sudden cardiac arrest gets your attention.  I would make absolutely sure that your arteries are pristine before taking this medication.  I hope to remember this site so I can post more as I know it.

[aulderyan]

Just found this site, thanks to everyone who posted.  I get the occasional AFIB once every month or two.  I was originally was given Rhythmol but couldn't stand the metallic flavor it put in my mouth for most of the day, so Dr. prescribed Flecainide.

I only take it when AFIB doesn't self-correct after 5 minutes, and take either one or two 100MG, with no noticeable side effects.  the AFIB gives me numb fingertips and lips and a sore jaw, and the medication corrects the AFIB eventually, sometimes it takes 6 hours, sometimes 1-3, it just depends.  I have wild dream every night anyway, so I don't notice dreaming as a side effect, and compared to how AFIB feels, I would probably put up with ALOT of side effects.  

I do not take it daily, although if my heart feels a little "loose" and jumpy some day I might take 100MG as a preventative, but that is rare.

I am 39, healthy otherwise, white male. I notice the AFIB is triggered by hunching, dropping suddenly, bending over, or failing to breath deeply.  Sometimes it happens while sleeping, but usually self-corrects those times.  Alcohol always messes with my beat, that seems the worst - as does orange juice, that seems to contribute to AFIB too, so I avoid both.

But I am posting mainly to say that my AFIB has improved, and I expect it to go away completely as I practice meditation, presence in the moment, spirituality focus overall, and understanding that I am a spiritual being having a human experience and that our predominant vibration is what produces all events, medical, health, or otherwise.

The more I focus on what is important, stop to smell the roses, lower my stress, the less AFIB I experience.  Its good to be informed, but drugs will never get to  the root cause, which is a lack of allowing wellness and life force to flow.

I believe our lifestyles and stress are the culprit, not the heart itself,  The jacked up heartbeats are a physical manifestation of becoming "pinched-off" from the flow of life, usually by observing what is (reality), instead of focusing on what we wish to create with all of the creative power that we were born with, but neglect to use.  Health issues are a wake up call, an indicator of what is in your vibration, and as such are a useful tool to help wake us up and get us back on the path of feeling incredible.  Is it important to you to feel incredible daily?

This may **** some people off, especially those in the medical field who are so focused on "facts" and "reality", but I feel compelled to share with you all about what is working for me, and it's not drugs, it's understanding and working with the Law of Attraction as extensively taught by Abraham-Hicks. (www.abraham-hicks.com) that has led to a reduction in AFIB episodes and my confidence that it is going to vanish soon in the same way it appeared.  

Also, I find that observing the AFIB as if it were happening to someone else, and watching my fear as an observe (not a participant) is the best way to dissolve the fear.  Eckhart Tolle's The Power of Now is a great resource to help you handle the symptoms as they occur - handle them without being fearful. Wellness exists everywhere right now, why aren't you allowing it?  A worthy question, yes?

With Love,

-Ryan

[Jayde25]

The vibration in the chest is a scary one, right? But we are all still alive and kicking and talking about it. Just don't ask your doctors as they don't know what you are talking about. I'm not knocking the docs but as to  AFIB and all of it's related side effects, they don't have a clue. And my specialist as much as told me that. He said a lot of the treatment is hit and miss. So it seems that they should be listening to what we say, recording it and evaluating it. They have, on all of the sites and forums on AFIB a chance to collate all of the side effects,symptoms, advice and use it in their trials. But they don't, so these forums are great when you are worried and anxious. Just don't be too anxious, and I know that sounds easy, but believe me I used to go into total panic when I first experienced AF, heart racing all out of rhythm, up to 220 beats per minute. I used to get in my car and drive myself to hospital, 20ks an hour, 2 and 3am in the morning. Guess what, I got sick of doing that. Now I take a deep breath, take a flecinaide(which I  hate because of the horrendous side effects)and sit down or lie down quietly.If it goes on  for too long I take another pill and get on my PC and get onto the AF sites for a bit of comfort and stress relief...manage your own fear. remember we all die sometime, not much we can do about it...just don't let it control your life. I am 69 female, still working full time(and doe get AF every 10 days or so so often at work)and I plan to fight this thing tooth and nail.

It is without doubt, one of the worst things you can have as you tend to live in constant fear, and I once wished my specialist would get it so he wouldn't be so flippant about it. Then I thought no, I couldn't wish it on anyone else.
Be brave, take care, and keep your fingers crossed for a bright young spark somewhere who will discover the cure.
The old school has become complacent.

[Kenny1948]

I was put on Flecainide 50mg twice a day along with Diltiazem 120 mg once daily.  So far so good. The Fecainide was given to me in the hospital. They monitored me for one day and then released me.  I felt a bit dizzy at first but have started feeling better.  Had my first follow up visit yesterday. No cardiogram, but BP and oxygen levels were checked. Was told I am fine, and can go back to my normal routine. Except for this bout of afib. my heart is fine. I have no other problems.

I have read so much about Flecainide that it scares me.  Especially when someone mentions things like heart failure. My doc told me Flecainide is safe for people with healthy hearts.  I sure hope this is true. Oh and yes, I have had weird dreams since on this stuff.

[hambone147]

Studies show that other medications will cause tachycardiia and fibs. Because of the depletion of COQ10 in the system to regulate the heart beat. That may be the silver bullet your looking for. As soon as the medical doctors get on board of alternative  measures we will be better off.

[princessway]

Reading everyone's post on this got me thinking if my EP is an idiot? I was prescribed flecainide by him a year ago for Pacs and refused to take them because of everything i read about the drug. I asked him if it needed to be administered in a hospital setting and he said no because its a form of a"pill in a pocket" According to him, i can take and stop it whenever i feel like it. I decided to try it and have been on it for 2 weeks. It really hasn't done much for my pacs...maybe reduced it somewhat..but i still get them 24/7. Read a whole lot about magnesium taurate and am considering getting off flecainide. I see him april 6th....maybe i'll ask him then...lol!

[SooZeeATL]

I'd find a new EP.

I started Flecainide at home, but was back in the EPs office a few days later for an EKG, then back in again the next week for another EKG, stress test, and echo.

I have afib, which is different than your SVT, but Flecainide (50mg 3Xday) worked great for me with no serious side effects. Just the wild dreams that some people mention. But everyone is different and I was not monitored closely when I started the drug, but compared to what your EP is suggesting, I was!

[NurseL]

I have PVC's, hypertension and SVT that currently is well controlled by Atenolol however this med has caused Psoriasis.  Went through a trial and error period with trying different meds and got increasingly ill with side effects (Lisinopril, Cardizem, etc)....saw an EP at the referral of a local cardiologist.  He wants me to start Flecainide 100 mg 2xdly but have reviewed numerous article on this med and considering my past history with reactions to medications (allergic reactions to numerous also not listed) AM TERRIFIED to take this med leading into an ablation which I have opted for.  No monitor mentioned, no hospital stay, just stop atenolol one day start Flecainide the next and see you in 6 weeks for procedure.  He also has only seen one test strip from one year ago when I was in SVT at the local hospital.  Any thoughts..........please respond as am becoming very doubtful over whole situtation!!!  

[Tjoyce]

Wanted to say that my husband was given a prescription for flecainide without any monitoring and a couple of months later was rushed to the emergency room in congestive heart failure.  I have read that this can be one of the more serious side effects of this drug but he was not warned or monitored in any way.  I don't understand why the doctor didn't start him on any of the other drugs which don't pose such potentiall risks associated with it.  I read the Johns Hopkins recommendation trying other less risky drugs first.  Now we are going to find a new cardiologist for my husband.

[Bon-Bon]

I take this moment to thank each and everyone who has or will post on this poll.  It has been a great help to me.  You have also helped many by sharing your experiences.  I appreciate you all.

Pleasant thoughts to each and everyone.

Blessings,
Bon-Bon

[banglamom]

I'm sorry for your ongoing battle too.  It IS hard.  Flecainide is no picnic... taken with beta-blockers, calcium channel bockers, and ace in hibitors... it rules my life.  I too get very frustrated having to put my heart at the forefront of all decisions.  I too find some comfort interacting with folks from this forum.  I have never met anybody and a couple are really my friends.  People here understand like none of my own friends and family.  I was glad to find it.  I've heard people say it stopped working as well.  I hope it takes a long time because I am 41 and have years of this to look forward to.  I keep waiiting for a new magic bullet.  We all are and as soon as it's found, we will broadcast it to all.  Watch for the news.  Take care.

[woblesox]

Been on Flecainide 100mg twice a day for 17 years for, afib.   Works really well and only really get a short bout of afib id a forget to take one or two.

I have never had any side effects.

[woblesox]

Just to add - still here with no afib and no side effects in 2023. Still taking the flecainide because it works for me.

[underinformed35]

I agree, it is much better than the alternative. It is a scary medicine but has really helped me. I just noticed that after being on it a few months it did not seem to be working as well as it did at first. That and the fact that I got the infection made my doctor raise the dosage.
Thank you and good luck to you also. It is so nice knowing that I am not the only one out there with these problems. Some days I get so depressed and frustrated because I just want to live my life and not have to consider my heart in everything I do. So it helps me to know that other people are struggling with the same thing!

[banglamom]

It could be related.  If you, like me, find that only flecainide impacts rhythms at all... I just have to put up with some annoying side effects because the side effects are not nearly as bad as the problem we are treating.  If I were to insist we try something different because of the side effects.. the next medications are so much worse.  Call and leave a message for your doc to check on the side effects.  If you aren't feeling like you are going to fall over... that is good sign.  You probably won't!  Good luck with it.

[underinformed35]

Well I think you are right...I feel like if something was going to happen it would have happened when I first started it, not just from raising the dosage but I am still a little nervous. I started on the lowest dose four months ago and now three days ago I started doubling that. Medicine is just scary sometimes, but this is the only thing that has worked for me at all. I have been having horrible night sweats the last two nights which are freaking me out. Do you think it is related to the dosage increase?

[banglamom]

Seems to me, if this was 4 months ago, you are probably in the clear.  My problem happened on day 2 of taking the medicine.  I have mostly found that the flecainide has worked very well for me.  I hope that you find it successful too.  Meds are complicated from this one on.  Be in communication with your doc as needed... and come here to ask questions.  There is certainly a broad range of experience as the patient represented here on this forum.  Take care.

[underinformed35]

I also started at home without a monitor about four months ago. It went ok.
I just had an infection and it screwed everything up and I had to raise my dose to 100mg twice a day two days ago. I am very nervous now after hearing everybody. I am ok, just a little dizzy and tired. I also have been having very crazy dreams on this medicine. The doctor just told me to call if I had any problems but they did not seem like I should be worried about raising it at all. I have tolerated it very well with the original dose and it has helped a lot. I just hope raising it does not cause issues!

[banglamom]

I think my doctor didn't do it that way because of the terrible inconvenience factor.  The outcome was, of course, even more inconvenient.  If the setting had been any different, it would have been deadly.  I'm thankful that I had decided to go to work, and to tell my friends, and that they are so good at what they do.  I would still be terrified to take it because of my initial response except that I am now almost 100% paced.  I completely recommend absolute caution.

The inconvenieince was how remote we were.  It would have been a treacherous 3-4 hour drive to get to the hospital.  They were used to my monitering myself to a large degree.  The whole situation was a disaster.  The "silver lining" was that after over 2 years, they finally found SOMETHING that worked to slow me down.  I don't like flecainide, but it works.  That counts for something.  Obviously, not everyone's response is that dramatic, but close monitering seems of the utmost.  Now, I am absolutely protected from the heart slowing down too much (or stopping) as long as my batteries are good.

[mammaoftwins]

The FDA recommendation is to be in a hospital under care of a physican when started Flecainide. I was on Flecainde 100 mg, twice daily, and my cardiodoc said I needed to be observed because of the class of this anti-arrythmic. I would never try an anti-arrythmic without observation, especially without testing my kidneys and other blood tests.

Mamma of twins

[banglamom]

I take 100 2x/ day.  It really gives me a gut ache.  I try to only take it with food.  Some times I throw up anyway.  My hands, face are numb often.  My tongue gets all sore from being bitten and rubbed on my teeth because of the annoying numbness.   Those are NOT the serious side effects that can be seen attimes.. so I figured I just have to let it slide.  I know that I can tolerate a lot.  I tried different meds.. and always more and MORE not just different.  All drugs have side effects.  I have been on most everything but tikosyn and amiodarone.  I don't want to try those.  They are rife with much worse side effects.  I have to put up with it because it makes my day to day living not life threatening.  It was destroying my heart to just go 180+ bpm every day, all the time, ad infinitum.  That was making my whole cardiac function slip.  I hope it won't quit working in a couple years.  I will take more and more if it will help. I've been on it for 14 months now.  It is also not the only drug I take, so it is hard to know which drug it is or if it is a combination of them working together.  I know the interactions more experientially than from textbooks.  Coreg and flec together drop my pressure, but propranolol and flec give me a lot of pauses.  I have got them traced (ekg) in 1st, 2nd, and 3rd degree heart blocks.  That would be a serious side effect except that we already have a safety built in.  I got the pacemaker shortly after starting the flecaininde.  Since we had finally found a drug that helped to slow it down, just had to get the pacer so I could take it.  None of it has been convenient or easy, but... it is what it is.

By the "works"... what is it that is slowed down?  When it comes to dealing with the side effects and adjusting doses as necessary.... my doctors have given me a lot of leeway.  I have been a cardiac nurse for 20 years.  When my pressure drops to 60/30.. I don't go to the dr, I just deal with it.  When my rate runs away in the 200s for a while... I don't go to the md, I just deal with it.  As a nurse, I already do that for other people and so my doctors have given all the options to me as well.  I carry a backpack full of meds.  It rules my life though and I am very weary.  I'm always likking for a better way.  Thanks for discussing with me.

[SooZeeATL]

Are you asking me what the side effects were of the higher dose of Flecainide? If so, then I felt drugged out of my mind. I was having difficulty functioning at work and couldn't find the energy to work out (which I do almost every night). On the lower dose (50mg tid) I have the wild dreams and it may have slowed down the "works" a bit but nothing else. I've always had low BP and rate (40 while resting) and that has not changed.

However, it's not working for me as well anymore and I'm getting breakthrough afib about 50% of every month. But it's been a good 2 years.

Numbness in your hands and face does not sound right at all. Did it start after  you started to take Flecainide? Have you asked your doctor or pharmacist about it? How long have you been on Flecainide and what is your dose? If I had those symptoms I would not have continued taking it, but each person has their own limits. Wild dreams don't affect my life at all. Numbness is a different story.

[banglamom]

What did it look like... not tolerating the flecainide?  I just deal with side effects as there seems to be no other option.  Tummy problems, bp/ rate problems?  Did you feel numbness in your hands and face at times?

[SooZeeATL]

I'm not sure about Flecainide for PVCs but I do know it does help afib. Usually I get tons of PVCs before I go into afib. As to your question, I started Flecainide at home but I had already failed a lower dose of Rhyhmol and couldn't tolerate a higher dose of Rhyhmol or start Sotalol because my resting heart rate is too low.

I left my cardiologist and started with an EC who immediately started me on Flecainide at 100mg twice a day. I had to come in for an EKG two days after I started. I also had an MRI of my heart, stress test, and echo the week before starting Flecainide. I couldn't function on the higher dose (100mg bid) so I ended up taking 50mg tid. I have regular EKGs and echos performed.

I'm healthy with no real heart issues other than afib. Flecainide has been a wonder drug for me until just recently when afib started breaking through for about 2 weeks out of the month. The only side effect I've really noticed is that from day one I've had wild, vivid dreams every single night. I wake up and as soon as I fall asleep again, another dream begins.

So, not sure if this helps, but the drug worked for me and I wasn't in the hospital to start taking it but I was closely monitored.