Carianti
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Carianti, February 2,  2019  8:01pm EST

Kinda stuck

Hello out there.  My name (my real name) is Donna.  I am 72 years old.  On a periodic echo in January of 2018, moderate calcification was found on my mitral valve.  My PC physician was not concerned but I made an appointment to see someone in Cardio to get an opinion.  I was told to wear a Holter monitor for a few weeks and right off the bat, AFib was discovered.  I was immediately put on Flecainaide (100mgs, BID) and Metoprolol (50mgs, BID) and started on Warfarin.  (I changed to Eliquis after a few months.)  I took them all for several months but began to have terrible side effects to the first two.  These were excessive sweating.flushing and intense shortness of breath.  My cardio physidian was unavailable for consult so I sought help from a pharmacist and decided to withdraw slowly from the Flecainaide.  The flushing/sweating stopped immediately.  I continue using Metoprolol but have halved the dosage to 50mgs, QD.  

I am waiting patiently to be seen by an Electrophysiologist but that won't happen until mid-March.  In the meantime, the shortness of breath is getting worse.  Any attempt at even minor physical exertion results in fatigue and the breath problem.  

When I saw my cardiac physician, she was not happy about stopping the Flecainaide but is having me wear another heart monitor for two weeks.....a few more days to wear that.

I guess what I'd like to know is if others have had similar experiences with these drugs.  Also, what would you do about the shortness of breath?  

 

10 Replies
  • john1818
    john1818, February 2,  2019  11:20pm EST

    Kinda Stuck (Donna),

    I also had problems with Flecainide and had the doctor take me off of it. I am primarily on Metoprolol (50mg 2x/day) and Xarelto (20mg/day) without any noticeable symptoms. I still have bouts with AFIB every few days and have learned to deal with it. What I have found supportive is investing in some medical equipment. I have an AliveCor EKG device, an automated blood pressure monitor, and a finger oxygen reader. I take my vitals every morning and have history records for my cardiologist on visits.  All three devices can be purchased for about $200 and using them gives me peace of mind.

  • TR
    TR, February 3,  2019  5:50am EST

    Donna,

    It would seem with your symptoms, waiting a month and a half to see an EP is not ideal. I would call your EP's office and ask if they have a waiting list for cancellations. Further, I would call every day about 15-30 minutes after they open and check on cancellations for the day and let them know you're feeling bad. That might get you in sooner and you have nothing to lose.Flecanide never worked for me, neither did propaphanone, another anti arrythmic drug, I wound up having to go the ablation route.  I might as well have been taking sugar pills. What did work somewhat was taking metropolal daily and taking a double dose if I had an episode.(pill in the pcket approach) This rate control strategy kept my heartrate below 100 during episodes which made the symptoms and the the recovery much more tolerable. Of course, this was all done at the direction of my EP. There are some excellent tapes on the StopAFIB.org site by Dr Eric Prytowski(sp?) that would be good for you to watch. Until you can get to see an EP, my doctors advice was, "If you feel lousy, that"s AFIB. If you feel really, really bad, go to the ER(as in in sustained high heartrate over 140, passing out,difficulty breathing etc). If the drugs are not a good option for you, maybe the ablation route would be the option of choice. Hopefully, a good, experienced EP will guide you through this and get you feeling better.

    TR

  • BethClark
    BethClark, February 3,  2019  10:04am EST

    Metoprolol is for rate control and flecanide is for rhythm control--two different purposes. I've been on both for almost three years and on just metoprolol even longer. (Plus Pradaxa for 3 years.) Luckily I haven't had any noticeable side effects from either of them and I have not had any aFib episodes since the flecanide was added 3 years ago. Different people react differently to the different drugs used to treat aFib. Coming up with the right meds and the right dosages can be trial and error. These are not the only drugs used to treat aFib so there might be other ones that work better for you. Doesn't seem surprising that your aFib is feeling worse. Even though you had the miserable side effects from the drugs you were on they might have been doing the job of controlling the aFib. Doesn't seem to me to be a good idea to be dropping and decreasing meds without physician input but I do get feeling so desperate that you had to try something different. If you're having so much trouble getting timely appointments with physicians then perhaps it's time to look for other physicians. Good luck. I hope that the EP helps you figure out the appropriate course of action for you so that you can get back to your life!

  • Shanfraz
    Shanfraz, February 3,  2019  2:11pm EST

    Have your made sure your thyroid numbers are ok.  Just as a precaution.  If thyroid off, can cause shortness, and many other heart symptoms.  At least you’ll rule it out.  Good luck. My moms cardiologist took her off fecanaide.  

  • Carianti
    Carianti, February 3,  2019  5:08pm EST

    Thank you to all who took the time and effort to respond to my query.  I take every statement very seriously and am contemplating making some changes.  Since my Cardio group seems to be so hard to get an appointment with, I'm exploring other groups in my area.  Since I am new to this "heart thing" I really don't know what to expect from other places either.  All I can do is try.

    In answer to TR, I am on the waiting list to see the EP but so far, no calls.  I intend to get more proactive about that and call every day!  I'm learning more and more about ablation and have watched every video Dr. Prystowsky via StopAfib.org and taken notes.  Good info there!  Thank you most sincerely for all your input.  It's good knowing there are such kind and generous people out there!

    To John1818, I recently purchased an EMAY Handheld EKG Monitor (EMG-10) and an excellent blood pressure device.  I will definitely be getting a finger oxygen reader.  Good idea!  Thank you most kindly for the suggestions.

     

  • TR
    TR, February 4,  2019  5:47am EST

    Donna,

    To all who are new to AFIB, I think it would be wise to post where you live. It is possible someone who has been dealing with this for a long time might be near your area and be able to recommend an EP they know to be good. Mellanie has a vast knowledge of doctors specializing in AFIB and sometimes has been able to help. There is also a tool on the stopAFIB.org site to help find doctors in your area. Look for ones who have FHRS in their qualifications, as this is someone who has met higher experience and other standards to be accepted in the Fellow of thr Heart Rhythm Society. You can put this in your search criteria filter. Finally, if your AFIB is bad enough, and you are able to, be willing to go out of town to get to the right doctor. I live in Florida near Ft Lauderdale and after my first ablation failed and I was not satified with my EP's plan for the second ablation, I went to Ausin, Tx for my second ablation, to a real master at this and I have been AFIB free since. Of course, this would ony be an option if you and your insurance are able. It wasn't an option for me for my first ablation. Here is a link to a few search tools for EP's in your area. Best of luck. There is a way out of this, so just keep plugging.

    https://www.stopafib.org/find.cfm

    http://a-fib.com/finding-right-doctor-for-you-and-your-afib-treatment-goals/

    http://www.livingwithatrialfibrillation.com/3137/successful-afib-ablation/

    TR

  • Carianti
    Carianti, February 4,  2019  5:05pm EST

    Thank you again, TR.  Your thoughts are much appreciated.  Actually I did use the search option and did not find any physician listed in my area. 

    For the record, I live in Medford, Oregon which is in the Southern part of the State.  There are several well-respected medical facilities here, Asante and Providence, so I was much surprised that not a one came up in the search!  I have a friend who went to Oregon Health Sciences in Portland for her care but this would just not be possible for me.  I will try to add my location to my profile in case anyone in this area has suggestions as to a cardio and/or EP to recommend for me.

    Again, thank you again for your suggestions.  I will keep you posted!

  • chawkins
    chawkins, February 5,  2019  8:54am EST

    Check the afib.com site. It has doctors listed for my area that are not listed in stopafib.org.  No one is listed in my area at stopafib.org but I have an excellent EP in my city who is listed in the afib.com site.  Good luck!

  • Babypens
    Babypens, February 5,  2019  9:02am EST

    My EP and  others at the Heart Hospital where I go in NE Pa. are not listed on the StopAfib site also. I found my EP to be very good. Is that listing only if you ask to join that group?

  • MellanieSAF
    MellanieSAF, February 5,  2019  9:21am EST

    For the sake of clarity, the StopAfib.org site ONLY lists doctors who give their explicit permission by listing themselves in our locator (unlike afib.com, which appears to list doctors without their explicit permission to do so).

    You can also check the membership list at the Heart Rhythm Society (https://www.hrsonline.org/Find-a-Specialist). Note that those with FHRS behind their names have more experience.

    Mellanie

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