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mikelly321 mikelly321

on Flecainide for AFIB. fainted from hyponatremia. anyone else experience? safer med recommendation?

I fainted recently. my Dr. said it was due to hyponatremia (low salt in my blood). I've read since then that Flecainide can cause this: "Hyponatremia is a previously unrecognized entity as an adverse effect of flecainide...

By this rationale, hyponatraemia would lead to Flecainide toxicity. Flecainide has been shown to reduce salt absorption in animal bowel." 

has anyone else experienced this as a side effect? 

​I was doing 100mg twice a day as directed by my original DR who performed an ablation on me three years ago. recently, I've cut it down to 50mg x 2 with no recurrence of afib symptoms. they did return when I tried to quit completely.

I also read: "Excessive mortality or nonfatal cardiac arrest rate was seen in patients with asymptomatic nonlife-threatening ventricular arrhythmias and myocardial infarction more than six days but less than two years previously who received flecainide compared with patients assigned to a carefully matched placebo in the Cardiac Arrhythmia Suppression Trial (CAST). It is prudent to consider the risks of Class IC agents (including flecainide), coupled with the lack of any evidence of improved survival, generally unacceptable in a patient without life-threatening ventricular arrhythmias, even if the patient is experiencing unpleasant, but not life-threatening, symptoms or signs. Flecainide is not recommended for use in patients with chronic atrial fibrillation. Case reports of ventricular proarrhythmic effects in patients treated with flecainide for atrial fibrillation/flutter have included increased PVCs, VT, ventricular fibrillation (VF), and death."

can anyone recommend a drug they've been on that's considered safer and that works? THANKS!

24 Replies

  • Kingjerry42 Kingjerry42 mikelly321

    I am not familiar with Flecainide. I can only state to you that certain drugs have an enormous (CONTROLLING) effect on the cardiovascular system by which I mean the following. These drugs force the heart to go in a particular direction (THEY ARE CONTROLLING) when your heart naturally wants to move in a different direction and the medication is forcing the heart to go in another direction. Doctors will have no clue to your dilemma. Only you will know what you are feeling. These effects can result in all kinds of terrible, unwanted side effects.

    The electrolyte system of the body can be completely thrown out of kilter. One must watch their Potassium Magnesium and Salt intake. When I do stationary bicycling I will drink Gatorade for Salt electrolytes and after a workout take supplements of Magnesium and Potassium. If one reads the Contraindications of ALL these heart drugs - there is surely a small or huge effect on the electrolyte system of the body.

    Take your results and discuss hem with your Doctor and determine what he can prescribe or CHANGE for you to rid yourself of this ghastly side effect you are experiencing with Flecainide.

    • mikelly321 mikelly321 Kingjerry42

      thanks, Kingjerry42! I no longer communicate with the Dr. who prescribed this after I moved, and my current Dr. is a general practioner. I will see a specialist if this effect returns. since I've increased my salt intake and l cut my doasge in half, the fainting and light headedness I experienced for about a week after the episode haven't returned. I play tennis hard twice a week and haven't had any problems doing that so far either. still, I'm hoping there's a safer drug out there that someone here can share their experiences with until I do find another specialist. Bisoprolol has been suggested in another post here by marco which I plan to check into tomorrow.

  • Greebo64 Greebo64 mikelly321

    When i was first admitted to hospital in 2008 with my 1st AF attack, after having cardio version to correct the rythm & going through various tests, i was sent home with Flecainide [50mg twice a day] but before a took any of the flecainide pills i decided to go and see my GP for a chat about it..

    When my GP looked at my file & other current meds that i was already on for a couple of different issues, he paused for a while & then said i know you havnt taken any of the Flecainide Pills yet, i asked how do you know that, he replied because if you had you would not be here now, he was shocked & so was I.

    Reason being i was also on another drug called trimipramine which i had been taking for a while, he told me that these 2 drugs taken together would be Fatal, & was astonished that the Hospital had not taken enough care to check my current meds'..

    Before i left the surgery he immediatley put a complaint into the hospital.

    He then suggested i stop the trimipramine & try the flecanide , however it was not long before i found the flecainide did not suit me, i  had several near black-outs over a 3 month period , so i decided to stop taking the flecainide, & the fainting issues dissapeared. My GP told me Flecainide could be in some patients fatal on its own with interctions from other drugs .

    Carlessness is rife in the NHS, & especialy right now

    • Kingjerry42 Kingjerry42 Greebo64

      Excellent Posting. Very Edifying. I thank you for informing me and our wide audience.

      Boy - did your Hospital make a TERRIBLE, TERRIBLE mistake. That is why it is always beneficial to read a little about the drugs which are being prescribed.

      Kingjerry42

    • marco marco Greebo64

      Sounds a familiar story. When I was under Croydon University Hospital (yes a University Hospital) cardiac clinic the doctor didn't know what meds i was on until I told him even though the info was in my file. NHS doctors can be very scary at times.

    • mikelly321 mikelly321 Kingjerry42

      Web Md contains a feature for checking drug interactions. they offer guarded support for Flecainide including the statement: Older adults should discuss the risks and benefits of this medication with their doctor or pharmacist, as well as other effective and possibly safer treatments. 

    • mikelly321 mikelly321 Greebo64

      Jeez, Louise, Greebo64! sounds like a case for Columbo! but seriously, you could have been legally murdered! I didn't have problems with Flecainide until recently after three years of taking it. I'm only taking Crestor otherwise which WebMd assures me has no interaction issues.

      glad to read they didn't get you!

  • Greebo64 Greebo64 mikelly321

    Kingjerry42

    Yes i have had 3 very near misses, all in the past 6 years, & all due to carelessness & neglect from the within the NHS.

    if you havnt already seen the latest i posted on here take a look at the link below.

    https://patient.info/forums/discuss/atrial-fibrillation-455839

    its really frightening

    • mikelly321 mikelly321 Greebo64

      if someone ever agrees to take your case, I would love to be on the jury! my ablation was incident free, but the Dr. wasn't at all confident I wouldn't have to have another one. he also put me on Flecainide immediately so I really never got the chance to test if it was the ablation or the Flecainide that kept the Afib in check. it has been under control for the most part for which I'm quite grateful. what was your experience after the botched operation? I couldn't tell if your Afib had returned or not, and what your next moves would be if it did?

    • mikelly321 mikelly321

      I was actually trying to communicate with Kingjerry 42 with the post above, about being on the jury, Greebo64, but it sounds like your jury could use me too. ;-p  very troubling...

    • Greebo64 Greebo64 mikelly321

      Not had any AF since the op', but it was not completed, they were on the last vein when the tear in my ticker happened .

      i do get the flutter now and then & also the occasional near fainting, not sure whats causing that, at the moment i am on Apixaban 5mg twice a day, 20mg, Sinvastatin, 4 mg Candesartin..

      i am not happy with my pulse rate since the op'...it used to be 75bpm at Rest before the op', now its always up in the high 90's at Rest.

       

    • Greebo64 Greebo64 mikelly321

      Definatley would Not have another "Point to Point Ablation" its dangerous. take a look at the link below, cry ablation is by far the safer, thats what i had the 1st time in 2010.

      Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums and the link resulted in a "Content not available" page. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Greebo64 Greebo64

      My previous post Lin k has been  removed.

      I hope this below is OK

      NOTE: Medtronic Receives FDA Approval, CE Mark for Arctic Front Advance™ Cardiac Cryoballoon to Treat Atrial Fibrillation

      Next-Generation Technology Reinforces Safety and Efficacy While Improving Procedure Efficiency MINNEAPOLIS – Aug. 24, 2012 – Medtronic, Inc. (NYSE:MDT) today announced that its Arctic Front Advance™ Cardiac Cryoballoon has received both U.S. Food and Drug Administration (FDA) approval and CE (Conformité Européenne) Mark for the treatment of paroxysmal atrial fibrillation (PAF). With the only cryoballoon system currently on the market worldwide, Medtronic’s second-generation system provides a more efficient approach to treating PAF than point-by-point, radiofrequency (RF) ablation.

  • diannec diannec mikelly321

    I had the same sort of questions just before I went on flecanide when I read the leaflet it scared the life out of me. I am on Irbersartan 150mgs, bendroflumethiazide 1.5mgs both once a day for HBP then I take Tildiem Retard 120mg twice daily for my HBP and PAF, Flecanide 50mgs twice daily for my PAF and Rivaroxoban 20mgs once daily, very occasionally I feel a little light headed but never very severe, how ever I have never been a big salt user but I have found myself using more salt recently.. And wonder if that could be my body needing more salt ?

    • mikelly321 mikelly321 diannec

      I've increased my salt intake with very little guilt for the first time in my life. ;-)   my blood pressure was ridiculously low the day I fainted. a more recent Dr. visit, my blood pressure was closer to normal, and I was at a more appropriate 34 sodium level. I presume it's a combo efect of reducing Flecainide to 50 x 2 and increasing my salt intake. the Dr. told me to buy pickles on the way home after the first visit.

  • sammis2u sammis2u mikelly321

    I have fainted due to my AF recently also.  So we are trying to control it better. Praying something works..this is awful. I am meeting with an electrophysiologist, but have been putting an ablation off as long as possible. Seems like my time may be near now. The side effects of the med you listed would give me serious cause for concern also. Knowing me I would not take it. look, as you are for another choice.. Nope wouldn't do it but thats just me.  

    • mikelly321 mikelly321 sammis2u

      I'm not even sure that my ablation ever helped since I was put on Flecainide pretty much immediately and never went off it until recenlty when the fainting thing seemed connected to it (I hit my head twice on the way down sitting in front of my computer desk as I was, and it was quite scary thinking it could possibly happen while I was driving). the Flecainide could have been carrying me from the beginning.

  • CDM2 CDM2 mikelly321

    Hi Mike.. Last summer I had episodes of what seemed to me to be hyponatremia.  I am on flecainide 2 x 50 and verapamil SR 180, and my afib is really under much better control.  Still get it but not as often.  I pop in and out.  I raised the hypnonatremia question with both my specialist and my GP.  Eventually an electrolyte test was done, and I was within the range of normal.   I chased the literature on hyponatremia and flec.. There were only a few instances..  And yes flec can be fatal in some people.  Man, I didn't choose to have afib!!!!  I am more conscious of my salt intake now, and especially my fluid intake in hot weather!!!!

    • mikelly321 mikelly321 CDM2

      hi CDM2,

      it appears to be a recently discovered connection so there's limited literature. I was on 100 x 2. seems like most people here are on 50 x 2 like you. I have cut back to that with no increased afib episodes. may try to cut it to 25 x 2 to see what happens. the less you take, the smaller chance of nasty side effects, at least until I can find something considered safer. so what is verapamil SR 180 doing for you? looks like it's pretty heavy duty from a quick read...

  • jack82115 jack82115 mikelly321

    to start buy her a medical alert. preferably with a fall detector like http://www.toptenreviews.com/health/senior-care/best-fall-detection-sensors/medical-guardian-review/. Or without it, simpler, for example, such https://qmedichealth.com/products/cellular-medical-alert-service. Or a phone that reacts to falls https://www.amazon.com/Snapfon-Senior-Unlocked-Hearing-Compatible/dp/B005CWSF3U/?tag=aboutcom02lifewire-20&ascsubtag=4125595%7Cgoogle.com.ua%7C%7C% 7C99% 2C83% 2C79% 7C1% 7C

  • CDM2 CDM2 mikelly321

    Update:...I progressed from afib to atrial flutter... This was blamed on the flec.  My new GP, my old GP and the cardiologist in emergency said "what are you taking that for?"  They consider it dangerous.  I was taken off flec.  I have been concentrating on healthy lifestyle, losing weight and etc.  I have occasional afib episodes and try to keep my electrolytes balanced.  So far so good.  Good luck to all

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