The only thing I can think of that might have caused this sudden change is that a cardiologist prescribed flecainide 50mg twice a day, and I started taking them July 6. Looking at side effects for flecainide on the net I find that 10% of patients report dyspnea. (I had to look it up - it means breathlessness or shortness of breath; labored or difficult breathing [https://medical-dictionary.thefreedictionary.com/dyspnea].) I e-mailed this to the NP who heads the sleep clinic at my provider (Kaiser Permanente), and he replied that it couldn't affect my breathing during sleep. I disagree, and I have an appointment to see him on September 13, so I thought it might be clever of me to ask here if anyone else has had experiences with flecainide, good or bad.
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Flecainide
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09-03-2018, 08:00 PM
Flecainide
I've been successfully using PAP machines since my diagnosis (severe) in March 2012. By 'successfully' I mean my AHIs are always under 5, and usually 2-3 or so. Unfortunately, starting the first week of July my AHIs are now over 5 two nights out of three, and frequently 8-9. And even when they are under five they are around 4.
The only thing I can think of that might have caused this sudden change is that a cardiologist prescribed flecainide 50mg twice a day, and I started taking them July 6. Looking at side effects for flecainide on the net I find that 10% of patients report dyspnea. (I had to look it up - it means breathlessness or shortness of breath; labored or difficult breathing [https://medical-dictionary.thefreedictionary.com/dyspnea].) I e-mailed this to the NP who heads the sleep clinic at my provider (Kaiser Permanente), and he replied that it couldn't affect my breathing during sleep. I disagree, and I have an appointment to see him on September 13, so I thought it might be clever of me to ask here if anyone else has had experiences with flecainide, good or bad.
09-03-2018, 08:23 PM
RE: Flecainide
not used it but I did find this: (bolding mine)
Quote:Antiarrhythmics source: https://www.acc.org/latest-in-cardiology...ep-quality
PaulaO
Take a deep breath and count to zen.
09-03-2018, 10:01 PM
RE: Flecainide
I have been taking flecainide 100mg twice a day and Nadolol 20mg once a day for 6 months and have noticed no change in my apnea. My AHI is still ~0.25. I do notice a change when climbing stairs.
I see your pressure settings are 15-20. What is typically your 90% or 95% pressure?
09-04-2018, 12:24 AM
RE: Flecainide
(09-03-2018, 10:01 PM)tedvpap Wrote: I have been taking flecainide 100mg twice a day and Nadolol 20mg once a day for 6 months and have noticed no change in my apnea. My AHI is still ~0.25. I do notice a change when climbing stairs. The change when climbing stairs is because flecanaide (and sotalol and others like it) lower your heart rate as one of the tricks to stop atrial fibrillation. I experience the same thing. As for my pressures, some nights it never gets much above 17, but two ore three nights a week it hits 20 and stays there for hours. And these are the nights with highest AHI. I had a new sleep study on 7/31 and just now got the printouts. There are a lot of things I intend to discuss with the NP on the 13th, and one of them is if I should go to a bipap so I can get higher pressures. The night of the sleep study my AHI was 8.0 and my maximum pressure was 18. Yet in the conclusions they said I would be fine to continue at 15-20 and that the 8.0 was acceptable. That NP has a lot of explaining to do, and not just about the flecainide. Thanks for your experience with flecainide. You are taking twice as much as me and apparently it has no impact on your apnea. But we're all different. I still think it is the cause of my sudden increase in apneas; it just need to convince the NP and the cardiologist.
09-04-2018, 12:28 AM
RE: Flecainide
(09-03-2018, 08:23 PM)PaulaO2 Wrote: not used it but I did find this: (bolding mine) Thanks for finding that.
09-04-2018, 08:50 AM
RE: Flecainide
hi JJJ!
Cardiologist prescribed flecainide in february 2018 ,(100 mg.in the morning- 50mg night ) arrhythmia better controlled, and I can't say if my apnea as improved because of flecainide and the resmed but I feel a lot better than 6 months ago.(month aver. 0.48 AHI ). But that,s me ! snorybob.
09-04-2018, 11:16 AM
RE: Flecainide
Why don't you go back to the cardiologist and explain the changes in sleep, and ask for a different medication?
01-15-2019, 06:56 PM
RE: Flecainide
This is an old thread, but I have lots of things to add for those who might be on flecainide and/or thinking of a BIPAP.
I kept shuffling along with me Dreamstation APAP set at 15-20 and kept taking the flecainide until all heck broke loose in early December. I had been constantly bitching at the Kaiser Permanente cardiology department because of shortness of breath. In addition to the flecainide (50mg BID), I have been taking 100mg metoprolol succinate once a day, and the purpose of both is to lower the heart rate as a technique to stop my heart from going into tachycardia brought on by atrial fibrillation. Finally they decided to put me on a 14-day heart monitor to see what was going on. At the end of the 14 days I mailed it to the manufacturer so they could download the data and send it to KP cardiology. A few days after I dropped it in the mail I got frantic calls from KP cardiology, including the head doctor, who said 'get to our hospital as soon as possible, do not drive, we have set you up on direct admission so you can just identify yourself and they will immediately take you in, and call an ambulance to get here if necessary.' At the time I had gone for a walk and was 20 minutes from home, and feeling fine. 'What's wrong?' I asked. 'Your heart is going into pauses, several times as long as ten seconds. There is no way to tell when, but eventually it will fail to restart. We have you scheduled for a pacemaker, immediately.' So I walked home, packed some stuff into my backpack and set out for the local light rail train that would take me straight to their hospital. Unfortunately, I forgot my Dreamstation and mask, as well as my pills and insulin. OK, I'm old; I'm entitled to be forgetful. The phone calls started about 1pm and I finally got to the hospital about 3pm. When I got there they took me to a room and set me up with an IV and stuff for surgery. But there was a problem. I also take warfarin (Coumadin) to thin my blood, and they didn't want to do surgery when it was really thin, so they put me on a vitamin K drip, because that is the antidote for warfarin. Unfortunately, by 6pm it was still not down far enough and all the surgery people involved in pacemaker installations were going home, so they decided they'd do it the following morning. And then there was an amusing interlude with a fellow from the sleep department to bring me a loaner PAP machine and mask. The machine was an old PRS1, but that was fine because I used one for years and knew how to set it up. The mask was horrible, but he said it was the only loaner mask they had. And then he set about changing the settings on the PRS1, so while he was working I told him to set it to 16-20cm with no ramp or anything else. He replied that he could only set it to what was in the chart, which only a doctor could change. At the time that was 5-15cm, which would be ridiculous, but I just smiled to myself and told him that he did fine. As soon as he left I got into the clinician menu and set it to 16-20cm. (Thanks Apnea Board for teaching me how to do that many years ago.) But it turned out that the machine and mask were totally unnecessary, because I just lay in the bed and didn't sleep a wink all night long. Lying in a bed waiting for your heart to give out creates a little stress. It also didn't help that one of the doctors had asked about final directives and what would I want them to do if I ended up on life support. Eventually it got to be morning and they wheeled me into surgery. The procedure takes very little time and they use a very light anesthetic, so by 10am they were wheeling me out to a recovery area. And here they wanted me to stay overnight again, just to be sure everything was working all right. And when it got to be bedtime I asked for the PRS1 that I had used the night before, but when I had left the room they took it back to the sleep medicine department. So we had to order a loaner all over again. This time I got a different fellow, but the silliness with what to set the pressure at was the same as the night before. And as the previous night, as soon as he left I set it to what I wanted. And the happiest part was that this night I finally slept. And the next day I went home and continued living as before. Now, I had been having discussions with my sleep guy (an NP, not a doctor) for some time about my fragmented sleep. I had a new sleep study at the end of July, 2018 and they noted restless leg syndrome. My sleep guy said that RLS can cause arousals, so he has been prescribing various things to stop it. First we tried pramipexole, but it did nothing. Then we tried ropinirole, but it was also a failure. So at the end of December we gave up trying to stop the RLS and moved on to a plain sleep medication. For the first attempt he prescribed trazodone 25-50mg, where I was to start with 25, but if that didn't do the trick, to go up to 50mg. I have been taking 50mg now for the past ten days, and it is finally helping. I still wake up a couple of times, but previously I would wake up every hour or hour and a half, so that is a great improvement. And I feel better during the day, so the trazodone is a keeper. At our meeting at the end of December he also decided that if I wanted a BIPAP I should have one. He entered the order, and as I write this I just got home from picking up a Dreamstation BIPAP. If anyone has Kaiser Permanente, they charged me $300 co-pay when I got the regular Dreamstation APAP back on 22 March, 2018, but KP lets you return it for full credit within the first year. So now they're going to refund the $300. However, they're going charge me $395 co-pay for the Dreamstation BIPAP, so the switchover is going to cost me only $95. And the technician threw in a new mask and hose, because the ones that I brought with my old Dreamstation were in pathetic condition. And the technician wouldn't set it to what I told him to because he had to follow what the NP had entered. But I relented when he told me that the NP had ordered 15-25cm. I wanted that range so we can use the machine to titrate what I really need, and then I can tweak the settings later - I assume the buttons to push to get into the clinician menu are the same as for my old Dreamstation. So tonight I'll plug in my new BIPAP and start the next leg on my wild and exciting PAP journey. And tomorrow morning I'll find out if SleepyHead 1.1.0-unstable-2 on Xubuntu can read the data. Oh, and the technician knew all about SleepyHead, like, 'yeah, it shows me more stuff than I get with the Respironics software.' He also applauded me for being hands-on about my sleep apnea. In fact, all the KP sleep medicine people around here are happy when they find out that I can change settings on my own and track my data myself. So there's the latest chapter on flecainide and other heart meds, and their effect on my sleep apnea.
01-15-2019, 09:59 PM
RE: Flecainide
Congrats on the new BiPAP. It was a long story getting there. So did you get the BiPAP S or Auto? What is the EPAP and pressure support, or are you using S-mode at EPAP 15, IPAP 20 PS 5?
Sleeprider
Apnea Board Moderator www.ApneaBoard.com ____________________________________________ Download OSCAR Software Soft Cervical Collar Optimizing Therapy Organize your OSCAR Charts Attaching Files Mask Primer How To Deal With Equipment Supplier INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
01-15-2019, 11:11 PM
RE: Flecainide
(01-15-2019, 09:59 PM)Sleeprider Wrote: Congrats on the new BiPAP. It was a long story getting there. So did you get the BiPAP S or Auto? What is the EPAP and pressure support, or are you using S-mode at EPAP 15, IPAP 20 PS 5? Uhh, beats me. It must be Auto, since it is set to a range of pressures. And he said he set it to 2cm difference between the in and out pressures, which he demonstrated. I'm not sure that answers your questions. I see that I need some education about BIPAPs. |
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