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meggy8868 retired teacher; had my first echo which indicated HCM in 1999 but was not told I had the condition. Find out more about meggy8868
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  • Afib

    What is the best thing to do when going into AFIB?

    How can it be prevented.

    I've been to the ER 3 times now in 2 months. I am told to avoid stress but the events have occurred while lying down or resting. I get very incapacitated with these occurrences. The slightest movement feels like I am dying. The chest feels crushed.

    I haven't made it to Mayo yet because of their appointment schedule probably won't make it until April and won't see my cardiologist for 22 days and he doesn't really want my case.

    Will it go away if I jus tough if out?

    Does anyone else feel as if they have to live a life sans emotion?

    I can't even watch an exciting movie, it is too strenuous for me and my chest begins to hurt. I think my quality of life is going down hill, very down hill. I am 73 and have no relatives near to take care of me.
    HOCM diagnosed Mayo Clinic Aug. 2010

    25 mg of atenolol.

  • #2
    Re: Afib

    Sorry to hear of your afib issues. There is a saying that "afib begets afib" so that the longer and more often you are in it, the more likely it will hang around. You can try anti-arrythemia drugs, but they are not without risk and side effects. Here is a link to an article with some lifestyle suggestions that may or may not work: http://drjohnday.com...l-fibrillation/ I know talking about lifestyle things offends some people, but nothing suggested in the article isn't something we should not do anyway. I just had my second ablation this past Monday and hopefully have the afib licked for good. I went into afib/aflutter in September 2013 and was in it consistently despite multiple cardioversions. If you pursue the ablation route, get someone very expierenced, particularly with HCM patients. Ablations are more difficult with HCM patients and you will need an expierenced hand. Best wishes. jeff
    Jall

    Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
    Graduated to obstructed HCM by Dec, 2008.

    Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

    Comment


    • #3
      Re: Afib

      Afib is NOT something that should be ignored. Even short bursts of afib put one at risk for a major stroke. If you have any episodes of afib, you should be on appropriate anticoagulation therapy.

      As to what to do about it, there are medications that can control it, and there are procedures that can be done to try to eradicate it, like a catheter ablation in the long term, or a cardioversion in the short term.

      But, as the previous poster said, the longer you stay in a fib, the more likely it is to stay and the risks of ignoring it are just too high -- possibly life ending or causing significant disability.

      Best advice is to get to a specialist ASAP. I am sure if you called on Monday and explained the urgency of your situation, you could get in sooner.

      In any event, you should see an Electrophysiologist with experience treating Afib in those with HCM.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

      Comment


      • #4
        Re: Afib

        Thank You Jall and Cynaburst for the replies. I called the EP office and told the nurse but the "soonest" I could get in is Jan 22. I will try again. I am not currently in AFIB. Jall tried to look up the site and couldn't reach it. Are addresses supposed to have dots? I would think forward slashes instead. But will try to find Dr. John Day via google. I will do everything lifestyle possible. I was on warfarin. Just ate up my stomach and at 1.8 INR my eyes were hemorrhaging and the eye doc didn't like that. So the primary took me off as it had been since Aug since I had an episode. Now I have had two within two months. And the ER's tend to be a nightmare. The last one was very good only focusing on the problem at hand, and the one close to home had so many protocols that it was exhausting, asking me questions back to childhood and even how many times I brushed my Teeth. I took my HCM packet with me to te last ER and the Dr reviewed it but when I would bring my records locally they would just ignore them and treat me as an anxiety case.
        Last edited by meggy8868; 01-03-2015, 01:37 PM.
        HOCM diagnosed Mayo Clinic Aug. 2010

        25 mg of atenolol.

        Comment


        • #5
          Re: Afib

          Its important to really identify if this is Afib or not. It could be anxiety of some sorts (and perfectly natural) as well. But, you do have to be cautious should this happen. When I've had bouts of tacky (My AICD's doesn't register these as Afib) I take a baby aspirin and a small dosage of my BB (like half of 25mg of atenolol) if my first course of action doesn't work, which is relaxation & breathing exercises. Do you have a local EP?
          Marc
          Diagnosed @ 48
          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
          AICD - Valentines Day '08, Spark Plug replaced 11/14
          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
          Quietly going insane . . .

          Comment


          • #6
            Re: Afib

            Hi Meggy,
            Toughing it out isn't a good strategy - as others have pointed out, it can be dangerous, and the more you're in afib, the more you tend to stay in (or go into) afib. What have they said during your ER visits?

            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #7
              Re: Afib

              Hi Gordon & Mcube: I had an EKG which showed AFIB. I stayed in the ER for 5 hours and they were about to transfer to me Rapid City which had a cardiologist but I came out into normal rhythm. I was given 4 chewable baby aspirin because I told them that cardezim in an IV dropped by BP to 37 systolic. Aspirin gives me stomach pains as I had 5 years on Advil for a foot injury and took it too long and too much (under a doc's advice). Since coming out of AFIB, I have had what I call aftermath, feeling like I have been run over by a truck and a lot of chest pain. I have been unable to get to Mayo as I had car trouble on the trip and cancelled. They are booking 3 months out and I cannot get in until April now and I asked for anyone. Must be that mayu people are discovering their HCM. the EP/Cardiolgist is not near (70 miles away) and can't get in right away. Now we are in a major weather system 20 below on mercury and lots of wind chill. I know I am out of AFIB because when I am in it, I can't function, talk, or barely move. But I feel on the cusp so to speak.
              Last edited by meggy8868; 01-03-2015, 05:41 PM.
              HOCM diagnosed Mayo Clinic Aug. 2010

              25 mg of atenolol.

              Comment


              • #8
                Re: Afib

                The new generation of anti-coagulants (Pradaxa, Xareleto, etc.) don't need the constant blood work like Warfarin and you might see if someone could call in a Rx for some. As noted above, the real risk of afib is stroke. Some people use a "pill in the pocket" strategy, taking the anti-coagulant when they go into afib to reduce the risk of stroke. If I was several months out from seeing somebody, I think I would consider that. The one downside to afib you can't come back from is stroke.

                You might also google "Dr. John M" who has a blog on afib. He is an EP and also has afib himself. He has really well written pieces on afib and its treatment. Again, best wishes.
                Jall

                Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
                Graduated to obstructed HCM by Dec, 2008.

                Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

                Comment


                • #9
                  Re: Afib

                  Dr. John M is very good. Thanks so much. What do you think of taking 400 units of Vitamin E for blood thinning. I can't do aspirin two days in a row without gastric problems.
                  Or even Tumeric? I got as high as 1.7 on INR and had hemorrhages in the eye and was taken off.The EP said I couldn't take new drugs because the problem is valve not lifestyle if I understood him correctly. Wafarin was hard on me. Took my stomach about a month to get used to it (stomach pain) and then the bleeding in the eyes, looked like a prize fighter. Going back to study John M.
                  HOCM diagnosed Mayo Clinic Aug. 2010

                  25 mg of atenolol.

                  Comment


                  • #10
                    Re: Afib

                    Sorry, I don't know anything about natural anti-coagulant options. They do push taking the new generation anti-coagulants at night right after dinner to minimize the stomach issues that some have. You might check out at website called stopafib.org and search for an option. Lots of people there are very expierenced with afib issues.
                    Jall

                    Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
                    Graduated to obstructed HCM by Dec, 2008.

                    Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

                    Comment


                    • #11
                      Re: Afib

                      One big problem with the "natural" anticoagulants is that you don't get a measured dose - sometimes you get way too much, and sometimes way too little.

                      Gordon
                      Myectomy on Feb. 5, 2007.

                      Comment


                      • #12
                        Re: Afib

                        Hi folks: Well today I awakened with a brand new attitude and fighting spirit as in " I am mad as **** and not going to take it anymore." For those who remember that old movie. Well after being inspired by Dr. John M and reading his articles I have decided to take control. No more sugar, caffeine, refined foods and every day I walk, I don't care if it is 20 below; we know how to dress here at the North Pole. Also read the the Words of life in the Bible and felt life pouring into me. I will continue to be pro-active and not afraid. Dr. John talked about the big hammers the big treatments for AFIB which may do more harm than good. I will control what I can and what I can't put into the hands of God but NO more fear of the unknown. Exercised today and ate healthy, a good first start.
                        HOCM diagnosed Mayo Clinic Aug. 2010

                        25 mg of atenolol.

                        Comment


                        • #13
                          Re: Afib

                          That's great Meggy.... Doing all you can for yourself with diet and exercise is good. However, don't forget, God created Cardiologists and Pharmaceuticals too.
                          Last edited by JillC; 01-04-2015, 04:24 PM.
                          After years of symptoms:
                          Officially Diagnosed HOCM 2006
                          Myectomy 3/11/13 at non-COE
                          Extended Myectomy 7/23/14
                          At Mayo with Dr. Joseph Dearani

                          Comment


                          • #14
                            Re: Afib

                            Meggy - Noone here is in a position to advise you what to do besides making it a priority to see an EP and get proper anticoagulation and treatment.

                            Strokes are nothing to mess around with.

                            My dad had his first massive stroke when I was a child cause he didn't know he was in afib. He took coumadin for another 30 years until he died following another one when they took him off prior to a hip replacement which he never had because of the stroke. He had a few TIAs in the middle. He was not proactive enough about his own medical care, and it made him first disabled, and then cost him his life.

                            It is up to you to make your own health care a priority and get the proper care. I hope that you are able to do that. I understand that it is difficult, and that there are obstacles. I get that. I also have a very complicated medical history and many things to worry about. But it is not impossible and requires you to follow up with the doctors and push the envelope for your own care.

                            Good luck to you.
                            Daughter of Father with HCM
                            Diagnosed with HCM 1999.
                            Full term pregnancy - Son born 11/01
                            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                            Comment


                            • #15
                              Re: Afib

                              Meggy - I personally believe that attitude is vital and is an equal component in recovery.
                              Marc
                              Diagnosed @ 48
                              Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                              Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                              AICD - Valentines Day '08, Spark Plug replaced 11/14
                              After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                              Quietly going insane . . .

                              Comment

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