topic Re: Flecainide Users for A-Fib in Wellness

Flecainide Users for A-Fib

MKR14 — Tue, 30 Dec 2014 15:44:16 GMT

I am on Bystolic and an aspirin 81mg once a day for A-Fib. The Cardiologist just started me on Flecainide 50 mg twice a day due to my A-Fib being very frequent. I have been putting off starting it due to side effects but I know I have to try something to avoid ablation if possible. He wanted me on Zarelto but I declined at this time.

What are your experiences with Flecainide and is it working for you? The side effects could be nausea (most medications have this), vision changes, and a stiff neck. He said his patients do well on this. I have pancreatitis and acid reflux and he feels this is the best antiarrhythmic drug for me. I sure hope this works as I am so tired and weak lately it is affecting my every day life. I also am going to start exercising at home-slowly-to try and improve it. The doctor says exercise but don't overdo as exercise is one of the best things for A-Fib.

Everyone here has their own experiences with medications and I know we are not doctors but sometimes other persons experiences help the most and I appreciate each and every person that takes the time to answer. Happy New Year to all.

Re: Flecainide Users for A-Fib

151949 — Tue, 30 Dec 2014 15:49:32 GMT

You need to stop making decisions about your care and do as the doctor has ordered. A fib is extremely dangerous. If you suffer nausea the doctor could order you a scopalamine patch to wear until you adjust to the new med. Please stop fooling around and do as the doctor has asked for this condition. You are really playing with fire not doing so. If you really understood how bad this a fib can be you would be doing what the doctor ordered right away. The fact that you are not tells me you really do understand how serious it is.

Re: Flecainide Users for A-Fib

MKR14 — Tue, 30 Dec 2014 17:20:02 GMT

Thanks happy housewife for your reply. I do realize how serious it is and the doctor and I have had several discussions regarding the right meds for me. Due to a bladder intermittent bleed I am not a candidate for the blood thinner meds. I just retired from 20 years of working for specialists in the medical field and that is why I weighed the pros and cons so much. I saw so many people that were on unneeded meds while working in the medical offices. Now I am confident of my decision. I was scared waiting but I am glad I did. It sounds like you or a family member has had experience with this also. If this med helps me I know I will have a better quality of life going forward. Thanks again.

Re: Flecainide Users for A-Fib

151949 — Tue, 30 Dec 2014 20:47:40 GMT

On 12/30/2014 MKR NY said: Thanks happy housewife for your reply. I do realize how serious it is and the doctor and I have had several discussions regarding the right meds for me. Due to a bladder intermittent bleed I am not a candidate for the blood thinner meds. I just retired from 20 years of working for specialists in the medical field and that is why I weighed the pros and cons so much. I saw so many people that were on unneeded meds while working in the medical offices. Now I am confident of my decision. I was scared waiting but I am glad I did. It sounds like you or a family member has had experience with this also. If this med helps me I know I will have a better quality of life going forward. Thanks again.

I was a critical care nurse for 42 years - I saw the results of the people who decided they knew more than the doctor about caring for their disease. Clearly, just working in a medical office does not make you knowledgeable enough to make a decision about this on your own. People who have bleeding issues and can't take anticoagulants are at very high risk with a fib of getting pulmonary embolism or stroke. If they can't get your a fib to convert back into regular rhythm then you will likely need to have greenfeild filter put in to prevent clots travelling. There are many cons here but none of them are as bad as a stroke or pulm emboli - period!

Re: Flecainide Users for A-Fib

Shelbelle — Tue, 30 Dec 2014 22:33:54 GMT

My mom took a full size aspirin and Amioderone everyday for her A Fib, kept her in pretty good shape for a long time. Friend of mine just underwent an overnite hospital stay procedure for her A Fib, still has to take Xerelto. I think the procedure burned off some of the area where the A Fib is happening.

Re: Flecainide Users for A-Fib

Gooday — Tue, 30 Dec 2014 22:37:55 GMT

I was on Flecainide for 6 years with absolutely no side effects. I worked in the medical field as well for 30 years. I took it for PVC's - palpitations. However, it lost it's efficacy for me a year ago causing the palpitations. Then in September, I was in the hospital for a couple of problems and I went into a-fib. After much deliberation and thought, I have decided to stay on Xeralto. My 86 year old dad has been on it for over 2 years. So, to answer your original question... No side effects at all from Flecainide. It's a good medication that has been around for a long time.

Re: Flecainide Users for A-Fib

MKR14 — Wed, 31 Dec 2014 00:31:20 GMT

Shelbelle and Gooday thanks for the ""kind"" remarks as it is nice to know what others themselves have experienced. I decided to start the Flecainide on Monday next week as my doctor will be away the rest of this week. This way I can go see him if any problems arise when starting it. I live about 10 blocks from his office and it is located in the hospital in our city. I am going into this with a positive attitude as I look forward to being more active. Happy New Year. May 2015 bring good health to all the forum contributors.

Re: Flecainide Users for A-Fib

151949 — Wed, 31 Dec 2014 01:42:04 GMT

On 12/30/2014 MKR NY said: Shelbelle and Gooday thanks for the ""kind"" remarks as it is nice to know what others themselves have experienced. I decided to start the Flecainide on Monday next week as my doctor will be away the rest of this week. This way I can go see him if any problems arise when starting it. I live about 10 blocks from his office and it is located in the hospital in our city. I am going into this with a positive attitude as I look forward to being more active. Happy New Year. May 2015 bring good health to all the forum contributors.

It's only tuesday - you are going to wait an entire week? That is not a good idea.

Re: Flecainide Users for A-Fib

Gooday — Wed, 31 Dec 2014 02:48:15 GMT

I would not hesitate to start the Flecainide. In fact, I remember feeling significant relief immediately after starting it. And, IF and that's a big IF, you have a problem, your doctor has someone covering for him. JMO.

Re: Flecainide Users for A-Fib

MKR14 — Wed, 31 Dec 2014 03:53:15 GMT

Gooday : I will start the Flecainide tomorrow and hopefully I will have a positive reaction as you did. I have only been on the Bystolic for two weeks and it has helped with the rapid heartbeats. I have a very sensitive stomach due to my pancreas problem so I will take it after an appointment I have in the morning so I will be home to relax the rest of the day. I know I take it at the same time each day. Then I will take the second dose right after supper. I will post back in a week and give you an update. This is an easier solution than ablation would be as the doctor said I would have to take a blood thinner for three months after the procedure.

Re: Flecainide Users for A-Fib

Gooday — Wed, 31 Dec 2014 23:55:05 GMT

On 12/30/2014 MKR NY said: Gooday : I will start the Flecainide tomorrow and hopefully I will have a positive reaction as you did. I have only been on the Bystolic for two weeks and it has helped with the rapid heartbeats. I have a very sensitive stomach due to my pancreas problem so I will take it after an appointment I have in the morning so I will be home to relax the rest of the day. I know I take it at the same time each day. Then I will take the second dose right after supper. I will post back in a week and give you an update. This is an easier solution than ablation would be as the doctor said I would have to take a blood thinner for three months after the procedure.

Sounds like a plan.

You know, it's so easy for us to advise others and yet, at times I wrestle with what's right for myself. So, I understand where you're coming from.

Last year I saw an electrophysiologist/cardiologist and he gave me the option of the ablation procedure. I said "No". and that was before I was diagnosed with the A-fib. Now, I have an appt. to see him next Tuesday to fill him in on what I went through while in Illinois. I saw the cardiologist a few weeks ago and she suggested I see him. I had a vein mapping of my lower extremities yesterday as I get swelling in my left foot. I do have bilateral knee and leg pain so, we'll see what that's all about. Hopefully, nothing.

Getting back to the appt. Tuesday....I have a gut feeling he may order a Holter monitor to check my rhythm. I feel good but that's the thing with A-fib...you don't always know when you are in it.

You take care of yourself and check back with me and let me know how the Flecainide is working out for you.

Re: Flecainide Users for A-Fib

MKR14 — Thu, 01 Jan 2015 01:35:38 GMT

Gooday, Thanks for the kind words. I did have the halter monitor on for three days in October and I had quite a lot of problems. I decided to start the medication on Sunday as I have to get my medications into a schedule that works the best with my other health issues. You are right as we have to do what feels right for ourselves and it is not easy sometimes. I think I am being too cautious and it could be worse than if I didn't take the Flecainide. There is a site StopAFib.org that is an amazing site. It has videos of doctors from the Cleveland Clinic ( my heart doctor worked there at one time as he told us about it when I showed him the AFib site.) They take patient questions and two doctors answer them. He said he knew one of the doctors. The site really has a lot of sections to help answer or view questions you may have. I am putting together an exercise program for myself starting tomorrow and a diet change to help.I feel my A-Fib episodes so I will start the medicine Monday. I see my heart doctor in March unless I need him before. I have my heart doctor's cell phone number if needed. Best of luck with your doctor's appointment and please post back to let us know how you are doing. I will post the end of next week and hopefully it will be a positive one.

Re: Flecainide Users for A-Fib

wonderfulworld — Thu, 01 Jan 2015 02:56:28 GMT

MKR...I wish you well and have no info to help you. But I do have a question...you said you want to avoid ablation. Do they have ablation for Afib now? Years ago when my mother had it they did something called cardioversion, shocking the heart in hopes it would go back into normal rhythm. Ablation was not an option then. I am just curious.

Re: Flecainide Users for A-Fib

MKR14 — Thu, 01 Jan 2015 03:09:11 GMT

Yes they do. My heart doctor is the one that told me that if the Flecainide didn't help he would sent me to electrophysiologist/cardiologist specialist he works along side with for this. He said I would have to be on blood thinner for several months afterwards. I believe cardio conversion is shocking the heart and ablation is burning around the places in the heart that signals the areas that causes A-Fib. Either procedure has their risks. Thanks for the good wishes. You may want to check out the StopAFib.org site. It is very interesting and has the correct information we need. I signed up for their newsletter that is free.

Re: Flecainide Users for A-Fib

wonderfulworld — Thu, 01 Jan 2015 18:02:44 GMT

Thank you MKR, always interested as these things do run in families. I hope you get some relief soon...I remember how debilitating it was for my Mom.

For her, they put in a pace maker and gave her medicine to slow her heart rate down to where the pacemaker was running things. That was when she was in a fib permanently. Seemed to work well.

Re: Flecainide Users for A-Fib

Nonametoday — Thu, 01 Jan 2015 18:08:31 GMT

As a former medical employee and the wife of a man who has A fib/flutter and who is now on Xarelto, I would advise you to take your doctor's advice, and none else. Let the expert who knows your situation best, be the one whose advice you follow. You can make those decisions as a team.

Re: Flecainide Users for A-Fib

MKR14 — Mon, 05 Jan 2015 00:12:51 GMT

Update: I started the Flecainide on 1/1/15 and now at the end of day three. I have done really well so far other than being lightheaded and weak at times. Maybe after a week these will subside. I have noticed a slight decrease in the A-Fib episodes during the day but still have them when laying down to sleep or laying back in my LazyBoy chair. I went into to this with a positive attitude and am looking forward to getting some pep back in my step. I will post back in a few weeks to let others know in case this is a new medication for them.

Re: Flecainide Users for A-Fib

MKR14 — Wed, 07 Jan 2015 14:17:01 GMT

Gooday- How did your appointment go yesterday with the doctor? The new year hopefully will bring all of us better health. I have been thinking about all of you that posted with A-Fib problems.

I am on Day 6 of starting the Flecainide and although it is helping I can't wait to see if the weakness and lightheadedness goes away in the next week or two. I get more A-Fib episodes at night more while in bed. If the dizziness and lightheadedness doesn't subside I will call my heart doctor or Pharmacist to see if the symptoms will stay or not. I make sure I eat something every time I take it as the doctor said I could do that. From what I have read new medicines as strong as Flecainide takes a few weeks for your body to level out from it. I want to get back out and do things with my friends but with all the flu going around our area in upstate NY I am staying close to home for now. My husband loves to go to the grocery store so he takes off with a list and he knows that is his way of helping. Works for me.

Re: Flecainide Users for A-Fib

Gooday — Wed, 07 Jan 2015 22:02:26 GMT

On 1/7/2015 MKR NY said:
Gooday- How did your appointment go yesterday with the doctor? The new year hopefully will bring all of us better health. I have been thinking about all of you that posted with A-Fib problems.

I am on Day 6 of starting the Flecainide and although it is helping I can't wait to see if the weakness and lightheadedness goes away in the next week or two. I get more A-Fib episodes at night more while in bed. If the dizziness and lightheadedness doesn't subside I will call my heart doctor or Pharmacist to see if the symptoms will stay or not. I make sure I eat something every time I take it as the doctor said I could do that. From what I have read new medicines as strong as Flecainide takes a few weeks for your body to level out from it. I want to get back out and do things with my friends but with all the flu going around our area in upstate NY I am staying close to home for now. My husband loves to go to the grocery store so he takes off with a list and he knows that is his way of helping. Works for me.

Happy New Year to you! I was thinking about you as well.

I had to cancel my appt. because of all things, I broke out in a rash the day before yesterday. Long story short: DH and I were away Friday night into Saturday. I evidently slept in a bed that had bed bugs. Monday night into yesterday morning I woke up with bites on the inside of my arms and on my neck under my ears. So, I had to see my PCP.

I feel good otherwise. Now, I wanted to share about Flecainide. When I was first put on it, I too was light headed and in fact, the evening I got home from the hospital, I felt myself getting ready to pass out. I could feel myself going down and was concerned about hitting my head on the tile floor. I called the doctor and they lowered my dose.

Also, at the time I was started on Flecainide, they started me on Amlopodine as well but it was for PVC's and not atrial fibrillation. I went into A-fib last September when I was hospitalized for a massive UTI, dehydration and high calcium level from one of my parathyroid glands (we all have 4). This threw me into A-fib. The cardiologist started me on Xeralto. I will see him back in May at which time he will order a Holter monitor and if and it's a big IF I continue to be in normal sinus rhythm, he MAY take me off the Xeralto. However, my dad has been in atrial fib for years and he also takes Xeralto. He had bypass surgery when he was 62 (he is now 86) and 2 1/2 years ago he had his aortic valve replaced. So, I figure if he can take it, I can too.

Good luck and let me know if I can help in any way. Again, they may need to lower the dose and see if that helps with the light headedness. It's always trial and error. Just know that there are other medicine and solutions to your condition.

Re: Flecainide Users for A-Fib

MKR14 — Wed, 07 Jan 2015 22:12:49 GMT

Thanks Gooday. Sorry about your bedbug experience. We aren't travelers and always was afraid of that happening to me. I would let where you stayed know about this. Sleep well and don't let the bedbugs bite does have a real meaning after all. Sorry I couldn't help myself. I will give the Flecainide one more week and I will call the doctor if needed. I am on 50 mg twice a day so I don't know of any other lower doses. The doctor said this was the lowest dose. The morning seems to be the worse as I have to plan my Creon (for my pancreas) and my Nexium around it. I eat a couple crackers or my breakfast when I take the Flecainide. Take care and I will report back. You keep us posted also.