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110 hr

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mike83 I love my amazing wife and bulldog. Aspirations to move to So Cal sooner than later! Find out more about mike83
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  • 110 hr

    My Dr at the Cleveland Clinic on Monday said my MRI was normal which was good to hear. I do not have any of the 5 risk factors for sudden cardiac death. I've worked out hard and played sports for the past 25 years and never passed out.

    I don't believe the medicine I'm taking is working just yet, or if I need to try another. My main symptom of lightheaded feeling still comes and goes during the day. The past two days, I wore a heart monitor and went for a walk with my wife. My Dr said to keep my HR below 110. It is REALLY hard to do that. I almost feel like i'm at a crawling pace. I was also told Yoga and jogging would be ok if my heart rate was controlled.

    The question I was having is I know gaining weight can't be a good thing for many reasons. Do you think the 110 stipulation is cautionary until I find a medicine that helps? I understand I won't be able to run hard like I used to. If I have to jog, stop and walk in order to be safe that is ok with me. Also, will the medication work in a way that it would be very hard to get my heart rate over say 120?

    Thank you for your thoughts,
    Mike

  • #2
    Re: 110 hr

    I was told not to bring my heart rate over 130. I've been on Atenonol since diagnosed in Sept - raised from 25mg to 50mg in Nov. after my first Eco-Stress.

    During my Eco-Stress, my blood pressure dropped suddenly. My Dr. wasn't here, just a PA. She stopped the test because she said that was one of the first signs of passing out. I beleive my heart rate was around 140 on the way to the target of 150. Once the cardiologist arrived, I was lucky enough to get to do the test again! My blood pressure did the same thing, but I was never light headed so they continued the test.

    I don't think I could do much of a workout keeping my heart rate below 110, but I do notice my heart rate stays considerably lower now than before medication.
    Chris
    45 - husband & father of two, Bothell, WA (Seattle suburb)
    Designer & Creative Director
    Diagnosed September 2011
    100mg Atenonol
    Saving and planning for a myectomy

    Comment


    • #3
      Re: 110 hr

      I've always had low BP and since I've been on Atenolol, I CAN'T get my HR past 125. This is why they had set my ICD so low as it never showed any real high HR on the Data Dumps. Of course once device fired four times, they reset the threshold higher. Do talk with your doctor about this.
      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


      • #4
        Re: 110 hr

        Mike.
        Diagnosed 10/1/2010
        Heart wall thikness 16mm
        At first my HCM cardiologist in Boston said do not go over 130bpm or 75% of max (220 - age x .75).
        I wanted to get my hr up over that. I was feeling like I was putting a govenor on a race car. We did a cardio puminaory test last week and he gave me the okay to get my hr up to 145 on the record... off the record he said don't be afraid to go higher into the 150's or 160max but just don't stay there for a long time as it could send my heart into an arythmia. I will be 50 next week. I go to spinning classes in the summer 4 times a week and my hr hangs out in the 130's and 140's for an hour with a few peaks into the 150's during the workout. I xc ski skate ski on the weekends and my hr is in the 140's for just about the whole time I am skiing. I have an ICD implant that is set at 181 before it starts to think about pacing my hr down 3 times before it will ZAP me. I have not had any pacing or zapping inciodents. My doctor said that he gave the green light to get my hr 20bpm over the hr when I start to get into my arobic state on the cardio puminary test. We found out that was 125bpm. Keep in mind my doctor specializes in HCM, the athletes heart and is an athlete himself that runs marathons. I would ask questions and complain to your doctor if you want to get your hr up. After you get over the initial shockwave of finding out you have HCM you can start to investigate more in depth with your doctor on your athletic limitations.
        Hope telling my expeirence helps.
        Think snow!
        Bill (Vermont)

        Comment


        • #5
          Re: 110 hr

          Sorry Mike. I just read my post and I made a mistake. I go to spinning classes in the winter not the summer and I ride around 2000 to 3000 miles on my bike in the summer.
          Bill

          Comment


          • #6
            Re: 110 hr

            We vary a lot. Some people with HCM are very active (like Bill) while for other that level of activity would be potentially dangerous. The one thing that's clear is that, in general, we all do better with exercise.

            How much should someone with HCM exercise? I think it's your choice, if you're well informed. That means that you need to discuss it with your HCM specialist.

            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #7
              Re: 110 hr

              Thanks everyone for the advice. My wife and I feel like he's being cautious (understandable) since I was just diagnosed, and to see if the medicine works (which so far the calcium channel blocker has not). He continues to remark that I did 11 minutes on the stress test at 175 hr and didn't pass out. I've never had an issue with passing out when working out. Just lightheaded feeling/un easy feeling. I'm 33 and always went hard, but I could tell my last mile of a 5K would be rough. I don't expect to run races or the likes. But keeping my HR at 110 is a quality of life issue for me. I went for a walk yesterday and an elderly person passed me up which was frustrating to see. Of course we can all get through anything if needed. Also, my problem isn't the septal wall. My valve over extends when my heart rate increases. I do not have an arythmia (sp?) but I guess I could develop one with constant strain on my heart.

              For someone who's new years resolution was "to be more patient" I didn't expect to be tested so soon ha! But right now I need to find a medicine that works, and comply with the Dr for 3 months until my next echo-stress. I'd love to do the surgery, but he will not until we've exausted the medicine route. So I'm up for the challenge of being patient! I'm blessed to have wonderful people in my life and this outlet which has been great for me. Thanks again to my second family on here...

              Comment


              • #8
                Re: 110 hr

                Mike, before I was diagnosed with HCM & my myectomy my heart rate would increase very quickly during exercise, because my heart was working so hard. This is probably why you are having to walk very slow to not get your HR past 110. The medications did not help me before the myectomy but do help now after. I was told after the myectomy to keep my Hr between 115 & 130 during exercise, but I'm 53. So be patient as they try the medication cocktails before they consider the myectomy. I know its hard and frustrating not to work out like you use to. Who knows maybe they'll find one that works for you. Otherwise the myectomy was heaven sent for me, I'm back working out like I use to but I've never been the intensity like you or Bill...
                Mer

                Diagnosed 09/2009 @51 yrs old- HCOM
                Myectomy 2/17/2011
                Son & Daughter no findings as of yet (echos)
                No family history determined yet -- 1 sister, 2 brothers & extended family.

                Comment


                • #9
                  Re: 110 hr

                  Hello,

                  The 1st time I did anything consider aerobic was a 1.6 mile walk in 30 mins. I kept my heart rate at average of 95bpm. I am currently taking Toprol and I noticed that keeps my heart rate down. My average speed for my walk was 3.6 miles per hour (I wear a Garmin 910 heart rate monitor when I excercise). I see Dr. Lever in April and I would like to find out what I can or cannot do when it comes to aerobic excercise. My other cardiologist who dianogsed me says just don't workout with a heart rate above 150. So right now I am in cardio-rehab for the next few weeks and I will keep my aerobic excercise with them until after I talk to Dr. Lever. Before I was diagnosed with this on Feb 1st I was in the process of training for my 19th marathon. How things turn in your life so quickly. Please let me know what happens.

                  Thanks

                  Comment


                  • #10
                    Re: 110 hr

                    He Will,

                    Sure thing. Now that I'm on Cardizem and Toprol, my heart rate stays about 105. If I do anything that elevates my heart rate, it still increases but not very much. I'm still having symptoms no matter if my HR goes from 90 to 100 or from 140 to 170. It seems an increase in my HR triggers my obstruction. I'm scheduled for the myectomy on March 15th. I will keep an update on here.

                    Thanks,
                    Mike

                    Comment


                    • #11
                      Re: 110 hr

                      Hey Mike,
                      Just wanted to let you know that bp dropping during exercise is a risk factor for SCA. Have you been to a COE? Docs not being worried about a drop in bp during exercise would worry me esp if it wasn't at a COE.

                      Mary

                      Comment


                      • #12
                        Re: 110 hr

                        Hi Mary,

                        My bp does not drop during exercise. I'm not sure if I gave that impression. Thanks for thinking of me. I live in Cleveland and go to the Clinic for treatment which I'm going to have a myectomy next thursday.

                        Thanks,
                        Mike

                        Comment


                        • #13
                          Re: 110 hr

                          So, Mike, how did the myectomy go? I hope it helped you and that you'll be able to return to an active lifestyle.

                          Wow, all of the heart rates posted seem so low. I am not on any medication, but when I exercise, it's nothing for me to get my heart rate up to 165. If I push it, it goes to 170 but then I do back off! Dr. M. Maron wants me to keep it in the 155 range during exercise, but I would barely be able to jog and keep it that low. My ICD is read quarterly and no one has called me and chastised me about consistently hitting the higher rate. But after reading the other posts, I will call Dr. Maron and ask about it.
                          Susan
                          Diagnosed at age 53 in April 2010 (after having been
                          "cleared" several times)
                          Into running & cycling - cleared to continue at mild to
                          moderate level
                          Extensive family history
                          Lost my mom, aunt and nephew to SCD
                          St. Judes "Fortify VR" ICD implanted 8/30/2010 "Ces't Watt"

                          Comment


                          • #14
                            Re: 110 hr

                            Hi Susan,

                            I have a post called mike83 post myectomy that tells how things went. I'm currently on week 2 of post surgery. They had to put a mechanical valve in me which was for the best. So I'm learning and still trying to get my coumodin levels up to where they need to be. As far as how I feel; I've lost about 10 lbs. I still get light headed if I tend to walk too much. The light headedness comes from standing up too fast. I'm hoping after 3-4 weeks this will subside. I'm meeting with my cardiologist this week to discuss these symptoms. I never had an enlarged septum so I figured I wouldn't feel excellent like most post myectomy. So I try and keep moving but very slow. I hate being light headed. It's almost like a weird reminder the surrey didn't work even though I have to give it time. So that can sometime get me down. But all post surgery appointments have been great and things look really good all around. I was fortunate to not have any ancillary issues.

                            Thanks,
                            Mike

                            Comment


                            • #15
                              Re: 110 hr

                              Mike,
                              I think you may have read some of the after-myectomy posts with too optimistic an eye. I know I did before my myectomy. There ARE some people who feel excellent immediately within a really short period after surgery (for example -- one person who still posts ever so often went hiking on his way home from the hospital!). But those are quite unusual. I definitely did NOT feel excellent -- I felt pretty bad. Among other things, very weak. Yes, I started to feel excellent later -- but that was after 5 or so weeks. It takes time (more time than you have probably been expecting) to recover from heart surgery, and your symptoms don't sound surprising at all to me. I'm glad you're going to talk with your cardiologist about the symptoms -- of course you should -- but don't be surprised if they tell you you're doing well.

                              Gordon
                              Myectomy on Feb. 5, 2007.

                              Comment

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