Update from CDM: Now I have flutter
Posted , 6 users are following.
Hi.. After being in extended afib I made it to the clinic and then was sent to the hospital after an ECG determined that I was in flutter. People in emerg were very nice (in Victoria, BC). Big thanks. Anyways: they stopped my current meds (flecainide 50 bid; verapamil 180SR qd) and started me an Xarelto 20mg qd and verapamil 240SR qd. I feel really weird..... tired sort of. Can't fall asleep though but taking 1 Tylenol 500mg helps. I have a perpetual light headache.
Anyways: they say that they are setting me up for a cardioversion ...I'm not sure when that will happen because the specialist wait times are ridiculous.
Any help and advice from fellow flutterers would be appreciated. How do you keep on keeping on? What are the obstacles? I have an excellent vegetarian lifestyle. I hope I will be able to bicycle this summer!
0 likes, 15 replies
mikelly321 CDM2
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I had an ablation which is a bit different but which is supposed to have more long term effects. I was still put on Flecainide like you so never got a chance to test that theory until I tried to stop taking it and the again promptly began a return visit. I was able later to cut the dose in half to 50 mg x 2 like you. I have no idea what your other med is. Will look up later. I discovered I was taking too much Flecainide (after a couple years) when I fainted and had near fainting episodes after that until I increased my sodium level (which Flecainide can deplete) and cutting my dose in half with no ill consequence. I've heard it can take four or five of these bodily invasions to have the desired effect but am in no hurry to do it again although I recently had stomach flu and stopped taking it for a couple days and I'm still paying for it four days later hospitalized even although the root cause hasn't been completely pinned on my Flecainide abstinence yet. So that's been my experience. Hope it's more helpful than confusing.
mikelly321
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CDM2 mikelly321
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Hi Mike... Thanks for the post. Verapamil is a calcium channel blocker. (the other med). I've now had 3 doctors tell me that flec is dangerous and they pulled me off it. So no more flec for me. I'm glad it works for you!!! I just read that flec can cause afib to progress to flutter!
mikelly321 CDM2
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Jeez. Can you send me a reference? I read of people on it for over a decade without incident. Thanks! I'll have to look up flutter.
CDM2 mikelly321
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Do you know Dr. John Mandrola's site? He an afib doctor with afib!! I can't give you links here.. so Google him. But he says this on his page "Atrial Flutter - 15 facts"
"Rhythm control drugs rarely work to control atrial flutter. Rhythm control therapy of atrial flutter differs greatly from AFib. In fact, most rhythm drugs (not beta-blockers, Ca-E blockers or dig) can create a favorable milieu for atrial flutter. That’s right; some AF-rhythm drugs (propafenone, flecainide for example) often make atrial flutter worse. This is especially relevant to athletes on AF-drugs. Athletes who take AF-rhythm drugs (without beta-blockers or Ca-E blockers) can sustain dangerously high heart rates during exercise. I tell athletes who take these drugs to either not exercise, or stop exercising, if they feel like their heart is out of rhythm."
mikelly321 CDM2
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I have to learn to read. You're in flutter not fib. Please ignore much if what I wrote. That article is great on aflutter though!
mikelly321
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My other reply is being held because of.a link to that article I'm referring to here. They should clear it though. It's great!
CDM2 mikelly321
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Yup.. So.. give the name of the author and a bit of the title of the article and tell people to google it. He's great eh? Dr. John M.
hhanover CDM2
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Sorry about the hassle. My story is similar: I was in chronic afib and my doc started me on flecainide. Thereafter I changed from afib to flutter, which alarmed me but delighted my doctor who said he could cure flutter via a right atrial ablation. He did the ablation, which cured the flutter, but the afib came back so I was, more or less, even. By then I had been tried on four or five medications and one ablation, all of which convinced me there was no fixing the af and I wanted to quit dealing with the emotional roller coaster of new meds, hope, failure, disappointment, repeat. So I am on Warfarin and nothing else. I have afib but it is not disabling (probably because I am accustomed to it) and I exercise a lot and we take annual bicycling vacations. No spandex, just cargo shorts. I self test for anti coagulation and otherwise do everything I can. I have probably had atrial fibrillation for forty years, paroxysmal and chronic, I am 78 years old and I get on this site primarily to spread the gospel of not eating up your life fretting about curing afib. It most likely won't kill you - you can live to be a hundred if you have the genes. Moderate exercise, keep up the healthy diet, don't sell the bike and don't let this crummy disease burgle the enjoyment out of your life. Live long and prosper. I am not a Vulcan. I stole the saying.
CDM2 hhanover
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Thanks for the uplifting message!! I'm basically a vegetarian and the coumadin would be too difficult, so I'm resigning myself to Xarelto... but I would just rather take the calcium channel blocker to lower my rate and that's it. I'm actually doing okay today.. Totally WHOOMPED.... but not in obvious fib or flutter... and I don't start the new meds until tomorrow.. but I did NOT take any flecainide today!
Tennessee hhanover
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Hi. I hope I don't bore u. I started tachycardia, which was called an autonomic nerve disorder back then, basically a conduction issue, not anything wrong with my heart, when they finally caught it. Before they caught it I was told anxiety and they gave me a antidepressant that woke me up with my heart flying, that was in my twentys. Then I was told I had mitral valve prolapse with regurgitate. That slowed down wmetoprolol, then went into having pvcs in my 40s. Then in 2009 I had my first episode of Afib. Had an ablation. Still had small episodes. Used the pill in the pocket when I did. Usually only lasted three hours or less. Made me a nervous wreck. Was sent to the new EP in the office. Crab. Told I needed to lose weight, duh. My first episode, I was a lot thinner. I had an episode of afib. That lasted a week. The ep put me on 50 mg of flecainide twice daily. Converted. Then put me on dailyof Multag. Cardioversion on next episode two months later, put me on amiorderone on that for a month, no change. Told them I didn't want to take. Put on flecainide 100 twicedaily, no afib for about 4/5 months. Afib, cardioversion 10daysbefore cardioverted. Got some bad news. Back in on Christmas Day. Still in on flecainide 150 twice daily. Metoprolol. Said he will do the ablation since my weight isn't going anywhere. Won't be for about 4 months. Oh, I also have flutternow. I have been in afib basically since 12/7. My blood pressure goes up and down as so does my heart rate. No always really bad. How do u feel? Am I to understand you are always in afib. I don't have the same energy I used to, I also had both knees replaced since April, they offered a pacemaker but the would have to ablation the av node. So u can never go back. I some time think I feel better in afib, less anxiety for fear of going in. I am so confused. I am 64. Going through a lot of stress,always, but mor now as my husband may have lung cancer. Sorry about writing a book. I just don't know anyone else with this I have no one to talk to. Any advice? Thank u. Sandy
CDM2 Tennessee
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Yikes!! Boy what a ride you have been on!! I'm feeling okay right now. I'm more or less stable. Sometimes (as is usual for me), I get a blip for about 20 minutes to an hour each day and that's it. I'm 67 and I have lost 15 lbs. Losing weight is important (so they say).. Anyways: I have almost always followed a healthy active lifestyle (years of vegetarianism), no sugar, low fat, exercise (I used to do triathlon training years ago but that stopped 20 years ago because I had another chronic illness).. Now I walk hills and bicycle 25km... But I don't "push it". That's important. Hope this helps.
CDM2
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Thinks have calmed down. The "flare" seems to be gone. I am enjoying normal BP and Pulse .... Thank God!!!
donald85642 CDM2
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Don
CDM2 donald85642
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