Hi Everybody, hope you’re all managing this dreadful situation with the virus. I can’t believe the traffic is now getting much busier today in front of my house. Where are these people going?
I’m on 120mg of Diltiazem and have had a very prolonged attack of AF. My EP said to take the maximum dose of Flecainide if this happens. This stopped my AF after a few hours but I have felt extremely short of breath and dizzy since.
Had anybody else suffered like this?
I also feel very tired and wiped out after an episode, I'm not sure if it is caused by the AFib or the flecainide, which I use as a PiP. I take things very easy for the rest of the day (not to waken the beast again!)
I dont take any meds for the afib (except for anti-C's) and when I get a high HR 180+ for an extended period of time, I feel very worn out. Not the sleepy kind of worn out, more like Im my body it weak but my mind is ready to go. Ive got a PIP, but I rarely take it unless the monster stays for longer than 3 hours and/or HR is really high. Over the last few months, Ive noticed that the creature may only stay for 30 minutes or and hour then go away on its own. This shocked me as for the last 4 years its been 4-30 hours at a time, 2-3x per week. With this new schedule it has been on, I try to wait and see how long its gonna hang out, and not take the PIP.
Wow! What a great positive story. Right after diagnosis, I wish I also had taken only an anti-coagulant rather than a heavy dose of a beta blocker prescribed by my GP that only made the AF worse.
When all this first started years back, I was very active; remodeling our kitchen, landscaping the yard, sewing, visiting friends, or bike riding, etc. I wanted nothing to do with putting chemicals in my body. Both the doc and my husband kept suggesting I try some meds. I finally gave in and agreed to take meds for the afib. Just over a week later, I was sleeping 20+ hours a day, had no desire to do anything, and didnt care about anything either. I said to my husband (a surgeon) , Im not depressed, I just dont care... His reply was. "oh, that is probably just the beta blocker". WTF??? I stopped taking them and within 3 or 4 days I was back to myself. Even my sister said you sound like you again. After that, I vowed not to take any meds again, when the side effects are worse that the problem. Here I am 4 + years later on just the AC. and feeling great! Diltiazem is my PIP, which I may take 1-2x per month if that much. I just keep on, keeping on and never let the monster take my life away.
Wonderful! I wish you could spread the word -- your case --to all the GPs who have not bothered to understand AF by not keeping up with the current trials, who are badly trained by an incompetent cardiologist pontificating on AF rather than an EP who would really know what he would be talking about( my GP was trained by an incompetent cardologist), who robotically follow outdated guidelines and guidelines not personalized to their patient, and who bluntly blunder by not keeping up to date at all.
Due to the incompetent handling of my case by my ill-trained GP who first prescribed a high dosage of a beta -blocker which made my condition worse whereby I had extreme palpitations when I had none pre beta-blocker, then placing me on a rate control pill and increasing dose as a solution that "We may get lucky (his words)," I was kept one year by him to get immediately to persistent. Never did this GP even ask if I wanted to return to sinus. When in persistent, I asked what about rhythm control pills? His answer was he was not authorized to prescribe them. ( I totally lost respect for him and thank God he is now retired. )
So, my GP sent me to the same cardiologist who had trained him. This cardiologist was going to do the same thing to keep me to get to the permanent stage. To shorten the story, I went from B.C. Canada to Bordeaux to have three ablations to correct the "malpractice" of these two guys.
Luckily, when (about two years ago) my sister-in-law had only one episode of AF landing her in emergency, I suggested that she hold off taking the drug prescribed until she saw an EP. Her cardiologist/EP said it was a good thing that she had not taken the drug. Today she is still drug free and no AF.
Unfortunately, my friend's sister is now in long-standing persistent on her way to permanent. When she first went into persistent I urged her to get a referral by her cardiologist to an EP. His answer was that it was still too early. Even after having a cardioversion that lasted only a couple of days, this cardiologist still won't send her to an EP. He is hoarding her to get to permanent.
The point is that I admire and compliment you for not blindly taking a drug merely because it was prescribed. It is unfortunate that there are no statistics about , for AF, the harm done to patients by loading them with drugs for drugs sake and not the betterment of the patient.
My own father , the family has concluded, committed suicide due to the drugs he was given.
There are educated people out there, that will blindly take any medication that is prescribed to them without question. They are under the cloud that "THE GOD-DOCTOR" knows best and therefore knows all. My mother, who has a masters degree, took meds ordered by her cardiologist for a year. I pleaded with her to go to stop taking them immediately since she has a documented 6+yr thyroid problem. She didnt listen to me and kept taking amiodarone. Each time she call the office about her symptoms, she was told "it will pass", "they had nothing to do with the medication", and "there is nothing else she can take for afib besides that med". Finally in December, 2 weeks before her next appt. I convinced her to stop taking it. I sent her a link to see for herself, of all the side effects of that med she had been taking. The light went on FINALLY. We called another doc, got her in a week later and they admitted her to the hospital. The amiodarone had done damage to her already problem thyroid, as well as some other organs and she is now in permanent AFIB. She had one episode of AFIB a year ago. ONE EPISODE. and went to the ER ! And this quack put her on this med knowing she had thyroid problems. She now sees 3 different specialist one being an EP. They work in concert, and mom is finally getting better. Its been a long haul for her.
I am NOT one of the people that believe "better living through chemistry". I stay away from all of that crap. I only agreed to the Anti-C, last year, because my husband was so concerned about the stroke factor, and I am fully aware of the risk not taking it and also the hazards of taking it. (Im a bit clumsy)
All in all, life remains good. Had my first run in with my creature today. It was the first episode of the month... Almost 8 days without incident (tied for my previous record). Well tomorrow is a brand new day and Im looking forward to it.
Stay healthy, happy, be kind, and live it up fearlessly each day.
I am one of those educated people with a PhD that I have not professionally used. Early on, I did blindly take high blood pressure drugs prescribed by my GP. With the added AF drugs my blood pressure skyrocketed within a short time span, not just aging.
Frustrated with the medical system, I took matters into my own hands when addressing my high blood pressure after my third ablation. I read the trials, drew my own conclusions, and prescribed my own medication for the high blood pressure. I was astounded that my GP had read less than I did about the high blood pressure -AF combination, or so it appeared. It takes some intensive research to arrive at the right drugs for high blood pressure when one has AF. The GP was looking at high blood pressure medication isolated from AF rather than in harmony with AF. He was suggesting drugs that could be detrimental to AF. His parting words to me before his retirement was that doctors need people like me to keep them on their toes. I took the remark as a tragedy, not a compliment.
So now I monitor my own medication and challenge whatever I may be prescribed. I challenged my EP to come off Amiodarone (prescribed for 1st and 2nd ablation) because I knew it could damage my thyroid which it almost did. Unfortunately, I am at the stage now where my body is drug dependent for high blood pressure. I can hardly wait to get off Propafenone (anti-arrhythmic).
I do try to spread the word how important it is to research the drugs prescribed, especially since we are so fortunate to have the internet. I shudder what is happening to so many who are on drugs for drugs' sake. I shudder about doctors rushing to prescribe medication when there may be no need and especially high dosing patient.
I thank you for your parting words; they are so positive.
Thank you both for your replies.
I also really would like to know if anybody had taken Diltiazem and Flecainide together and apart from the exhaustion gets dizziness and is short of breath.
I haven't taken Diltiazem so I'm unable to comment. I do though take flec (everyday) and also have it as a PIP should the need arise.
I can't say I felt dizzy or breathless afterwards when used as a PIP. However we are all different. Afib can make you feel like that - it could be a response to your afib attack. Check of course with your doc.
Bambi wrote
"I try to wait and see how long its gonna hang out, and not take the PIP"
I could be totally wrong here Bambi. My understanding is flec works best as a PIP if taken within 20 minutes of afib kicking in. That's why I always carry one in my back pocket - just incase.
I fully understand you wanting to wait to see if it passes on it's own. I'm not medically qualified in anyway at all - that comes from my own research so check with your cardio. That 20 minute slot can make a difference.
For me I would take the extra 100 mg as soon as it kicks in. Maybe it's the right thing to do - maybe it's the wrong thing to do. As stated we are all different - the best thing is to check with your doctor what's best for you.
For me personally I take 100 mg the minute it appears - not going over the 300 mg dose (daily) of course.
The one other thing I find with flec is having it on an empty stomach works better - certainly as a PIP. Otherwise it's in your system and should have a constant effect.
Paul
Thank you Paul. My EP also says to take Flecainide ASAP
I dont take anything daily except for the Anti-Coagulant.
I do not take Flecainide , I only have Diltiazem for PIP.
The PIP, Diltiazem (short acting) I have is to slow my heart rated down. Having episodes now that may only last 30 minutes (some for multiple hours) and the PIP takes 45+ minutes to work, taking it at the onset with the short runs has been detrimental in the past. I have had, my HR dropped into the upper 40s, low 50s because the monster went back into hiding in less than 30 minutes. So this is why I practice the "wait and see".
Im both surprised and grateful that sometimes, my body will battle that monster all by itself, without any medical or chemical intervention. The best I can do, is just -let it. The less chemicals in the body, the better it is for me.
We are all different. What works for some may not for others. I run my own clinical trials to see what works and what works better. Both my doctors, my EP and my husband, know this about me and are willing to let me do my own research and share my findings with them without judgment. Well now they do after 3 years of battles.
In the meantime, I keep on living the best life fearlessly and at time ferociously. Hang in there, Paul. Thanks for your comments.
Good luck to you also Bambi and stay safe
"I keep on living the best life fearlessly and at time ferociously"
Words to live by 
Paul
I take Diltiazem and Flecainide, I have not noticed dizziness or shortness of breath but after and episode would feel completely wiped out for a day if it lasted 3-5 hours but strangely would not really feel like that if it had lasted as long as a week. I wonder if the body adapts after a while, if that makes sense.
"would feel completely wiped out for a day if it lasted 3-5 hours but strangely would not really feel like that if it had lasted as long as a week. I wonder if the body adapts after a while, if that makes sense"
Yes that makes perfect sense. If you have permanent afib symptoms are not felt the same as if you have paroxysmal afib. Your body can (and does) adjust.
If I had afib kick in now I would know about it on the spot. Before when I had it all the time (I'll guess at 2 years - bet I'm not far wrong) I hadn't got a clue there was a problem. My body had adjusted - as had my heart - and symptoms didn't show. Looking back a few did - nothing major though.
When my cardio said we'll try another 2 or 3 treatments, and if they don't work we'll leave you in permanent afib I almost felt a sense of relief. I know with rate and rhythm control I'd be ok.
Permanent V paroxysmal afib ? Which is easier to cope with ? It's a close call but permanent might just win it on points.
This is just my opinion but it's my take on it. I would of course prefer not to have it at all.
Paul
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