I am afraid to take Flecainide

[pat849]

I was suppose to start taking it in July but after looking it up I was afraid -I was on Atenelol but I weened myself off of it too.Now I'm not on anything except 4 baby asprin a day - I have PVCs & White Wolf Parkinsons disease. The past 4 nights I have went to sleep I have woke up 3-5 times by jerking it feels like my heart skipped a beat then a BIG beat wakes me up but then it feels like theres a pause & I grab my husband (fast) cause I feel like Im gonna die like theres no beat coming-its really scary Im afraid to go back to sleep cause it does it again & again Till Im just wore out& then the next day I am exhausted. I never had ths until the past 4 years what causes this craziness? I absolutely hate it!!!!

[TachyAfraidy]

Thank you for taking the time to respond. What you say about the 6 lane highway is precisely true. you can google dr shih ann chen, she is doing alot of the studies with many others, i just do not remember thier names. I am sorry to say that it is true. we just have to take the meds to manage it. and take the good they provide us with the bad. I hope your rhythm stays in check and you have  a great week. it is really nice to read that I am not alone in this boat. thank you again for your response. PS I realized my breathing thing could be bad for my heart from watchin g "Mystery Diagnosis" on discovery health channel. A gentleman would awake with a heart rate of over 140 and go to the hospital to be zapped. This went on over a period of time, and finally was determined that his weight and his night time apnea were triggers for his tachycardia. I thought, hey maybe I better go so the sleep guy, well, a year and a half later I saw the sleep guy and then went 911 to see the cardio guy at the same time. Just want folks to not make the same mistake I did. Going to a sleep lab seemed creepy to me, but it saved my life. Really. If I had not been on the monitor so they could see the sick sinus and afib, I might have walked around like that and just blamed it on feeling bad. I could have had a stroke or a heart attack or just had sudden cardiac death with that rhythm. My friends and family had all mentioned it to me, my snoring was unmistakeable and annoying to everyone. I even woke myself up at times, then I fell out of bed. I could have prevented things had I addressed it years ago. Live and learn.

[Wisconsin2007]

Thanks for the info.  I think my question was more rhetorical than anything.  I never really understood why I would read so many stories here about people waking up in the middle of the night with a racing heartbeat, but after your earlier post and my Googling on it, I realized why that happens.  And it's a little frustrating, because if I were a rat, I'd need that REM sleep or I'd just stop living.  I have to imagine humans need that REM sleep, too.

And I'm beginning to be of the opinion that other than some ablations, there really are no arrhythmia cures, that once an arrhythmia occurs in your heart, it's like a brain synapse - a new electrical road has been built and that road can't ever be torn apart.  It might not get used that much, but will never go away.  Or if it gets used a lot, it might receive improvements, going from a 2-lane roadway to a 6 lane highway.  Then?  Good luck keeping traffic off that one.  

[TachyAfraidy]

I am not clear on the question, but perhaps my situation is/was complicated by the apnea. I have snored for years. The arrhythmia hit me like a ton of bricks all at once in December/Jan and I noticed that my sleep was terrible, worsening over the previous 12 months. I would sleep sitting up, even fell out of bed and dislocated my clavicle. Football players often do this and MDs call it an AC rollover. I could have broken my neck, because I was so sleep deprived that I did not awaken until I heard every ligament in my neck pop upon hitting the floor. I knew that it was time to schedule a sleep study. It was at the sleep study that they saw my heart on a monitor for the first time ever and immdeiatly called 911. I had no idea what was in store for me. All I can say (without proven facts or test groups and published medical data) is that two cardiologists, my EP at Cedars Sinai (world reknown for their cardiac care) and my pulmunology group all said that my apnea played a direct role in my development of heart disease and arrhythmia that I will deal with for the rest of my life. Arrhythmia has no cure according to the ep, just things to manage it such as meds, rf ablation, pacamakers and so forth. I am learning something new everyday on this subject. Ten years ago when my father was alive and dealing with this disease, rf ablation was not even given as an option. I hope science continues to work to develop curative treatments. I was told that I will need to deal with this problem ongoing. I wear a CPAP machine over my mouth and nose every night and for any naps. I do not snore nor do I awake with a hr of 225. I sleep with out sitting up (I do recline and am propped). Finally, after two awful insomnia ridden years, I am now having dreams again and enjoying a decent night's sleep. Maybe if I had taken preventative steps sooner, my electrical systems in my heart would not be so chaotic. At least that is what the professionals are telling me.Just sharing my experience to convince others to go set up that sleep study if there are sleep and snoring/breathing issues preventing good sleep. It can do serious damage. Have a reat weekend everyone!

[Wisconsin2007]

@TachyAfraidy -

I had never heard that about REM sleep and heart health.  I did a quick Googling and it seems we're between a rock and a hard place when it comes to REM sleep.  A study done on rats found that if they were deprived of REM sleep, they died after 5 weeks, when normal lifespan is 2-3 years.  And it seems that scientists believe REM sleep is needed for good brain health.  

What's a arrhythmatic to do?

[TachyAfraidy]

I dropped into sinus April 24th after a March 10th ablation for really chronic afib/sick sinus. Flecainide is the only drug that seems to work. I take 100 mg twice a day. I will take it as long as my heart remains structurally sound. If you dare, read the book "Deadly Medicine" Thomas J Moore! I found it very interesting!! Don't dwell on the negative, it is not good for our condition! All of these meds are some sort of poison, literallyarsenic based, but manage heart rhythm very well in theraputic doses. I have minimal side effects, much fewer than amiodarone during my loading dose and propafenone, which accelerated my tachycardic episodes to 225 bpm. Verapamil currently handles the infrequent tachycardia and it has only lasted 15-20 mins the thee times that it has occiured post ablation. Sleep apnea played a major role in my onset of arrhythmia. I reccomend a sleep study and a CPAP machine. Oh, and one more thing..laying supine (flat) is a trigger for me, I sleep propped up or in a recliner with a CPAP machine. It has helped me tremendously in the management of my nocturnal tachycardia rhythm. You need good sleep. REM sleep is detrimental to good heart health. Maybe worth seeing a pulmonologist, sounds like sleep and your arrhythmia are definitely related.

[allaflutter1213]

I started taking Flecainide 50mg BID last week after my first bout of a-fib. I will take the Flec because I am more afraid of the a-fib than the drug and according to my heart cath my heart is structurally sound.

[kevk]

I have been taking Flecainide for fourteen years, It has been the only drug that has kept my PVC`s and V-Tach under control. Talk to your doctor about your concerns and see what your options are. I am pretty sure that all of the heart rythym meds can cause new or worse rythyms.

[Wisconsin2007]

I'm thinking you might benefit from another trip to the cardiologist.  Some people with WPW never have any symptoms.  For others it has the potential to be catastrophic.  Meatloaf (the singer) collapsed onstage in England and nearly died from WPW.  If your doctor is recommending Flecainide, you should trust him/her.  

For reference, both of my parents are on it and both report that they are just fine.