If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

At the Cleveland Clinic

Collapse

About the Author

Collapse

HCMfamily I'm a southern girl, a pastor's wife, a mom, and a freelance writer. My father-in-law and husband have both been diagnosed with HCM and we are awaiting tests on my children. Find out more about HCMfamily
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Re: At the Cleveland Clinic

    Glad to hear you got some answers; hopefully the Toprol will work well.

    I didn't do so well on Toprol. I had lot's of bad dreams and sleeplessness. I couldn't sleep at night or stay awake during the day. I also got VERY irritable to the point that my wife couldn't stand it. We had to switch to Verapamil.

    Having said that, if one can hang in there with Metoprolol, it's the best of the best when it comes to medically treating HCM. It takes time to adjust.
    ICD 1/20/10
    Myectomy 8/25/10
    @ Johns Hopkins
    Surgeon Duke Cameron

    Comment


    • #17
      Re: At the Cleveland Clinic

      When I had to go off Toprol XL for a few days (I ran out, and a reorder hadn't arrived yet) I felt more better and energized - until my heart went through pounding events, like those you are describing from going on the medicine.

      All was back to normal when I got my renewal in the mail.

      Some people respond well to BB's, some can't stand them - and some things take time to settle in. Make sure you note what happens and when (how long after taking the medicine etc.) and discuss it all with your Dr.

      It can take a while to find the right blend that matches your physiology and symptoms.

      Frank S.
      Father had "IHSS"
      "Exercise induced asthma" since age 40
      Diagnosed with HCM age 44 (2004)
      Myectomy and L Ant Artery unbridging Stanford Dr. Mallidi 3/17/2011

      Comment


      • #18
        Re: At the Cleveland Clinic

        You said:
        "Dr. Lever put him on 100 mg Toprol starting immediately."

        Was this Toprol or Toprol XL?
        Even little things like that can make a difference.

        XL is the time release formula, and having that (vs regular) makes a hige difference for me. If you are on regular Toprol and your body is passing it quickly, it may react like you are suddenly "off" the medicine, with heart poundings etc...

        Again, make sure you note time you take meds, time of symptoms, and anything that may be happening at the same time (alcohol? other medications? etc.)

        Frank S.
        Father had "IHSS"
        "Exercise induced asthma" since age 40
        Diagnosed with HCM age 44 (2004)
        Myectomy and L Ant Artery unbridging Stanford Dr. Mallidi 3/17/2011

        Comment


        • #19
          Re: At the Cleveland Clinic

          Hi! He is on Toprol XL. Dr. Lever upped him to 150 mg, but he is still having some symptoms. They aren't as frequent as before, but they are still bothersome. He keeps hoping the medication is going to work. He is supposed to call back if things didn't get better so I think he will do that Monday morning. It doesn't seem related to the medication necessarily. It makes him feel a little grumpy, but other than that I guess maybe these symptoms are like what was going on before he took anything.

          The weird thing is that he has trouble at night sometimes. It seems like when he doses off, if I put my hand on his chest, I can feel his pulse start to speed up and skip around pretty quickly as soon as he goes to sleep. Is that common with HCM to have fast pulse at night or at rest?

          Comment


          • #20
            Re: At the Cleveland Clinic

            When you say you can feel his pulse speed up and skip around . . . I think this may be the key. Are you saying you feel fairly regular beats and then a little pause followed by a much more forceful beat -- and maybe a number of these? If so, it sounds as though you're describing PVCs (premature ventricular contractions) or PACs (premature atrial contractions).

            These are common in ordinary people, very common in people with HCM, quite annoying (and scary for people with heart diseases) and for the most part not something to worry about -- unless you have a LOT of them or long strings of them occurring in a row. Do I remember that he had a Holter monitor after his visit? Have you heard anything about that?

            But maybe I've misinterpreted your description -- let me know if that sounds right.

            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #21
              Re: At the Cleveland Clinic

              Yes, I do think he has PVC's frequently, but here is a prime example...

              about 20 minutes ago, he was sitting in his chair and his face went pale. He said he felt his heart going fast all of a sudden and pounding hard. He couldn't breathe good and felt super uncomfortable although not in real pain.

              We grabbed the blood pressure cuff to see what was happening. It had shot up to 150/88 (been running 120/70) and pulse was 90 (been around 60).

              Comment


              • #22
                Re: At the Cleveland Clinic

                Yes, he did wear a holter, but never had any problems while he was on it. The first day he wore it was when he started taking the toprol 100 mg and he felt great. the second day he wore it we were in the car driving home for 8 1/2 hours.

                He hasn't heard anything from it yet.

                Comment


                • #23
                  Re: At the Cleveland Clinic

                  As you track these uncomfortable events to report to the doctor, it is worth noting what else is going on at the time. For example, if it was after eating a meal, or drinking alcohol. Both those things can trigger heart pounding/racing spells for many of us.

                  FWIW. taking metoprolol XL has reduced the chest pressure/pain and much of the heart pounding and racing for me, but I still can have spells. Just not everyday like before the meds. Good luck!

                  Comment


                  • #24
                    Re: At the Cleveland Clinic

                    They usually happen either late at night (between 10 PM and midnight) or mid-day after going up and down stairs. He doesn't drink at all so alcohol definitely isn't related. He does have some pressure after eating and occasionally even throws up in the middle of a meal, where the pressure builds and becomes painful. It makes his food feel "stuck" and he ends up throwing up. His dad does the same thing (also has hocm) though rarely. Tests showed no h-hernia or other GI problems though. It seems like those after meal or mid-meal problems dont' cause the pounding heart feelign for him though.

                    Comment


                    • #25
                      Re: At the Cleveland Clinic

                      OK, it sounds as though there may be more going on than just PVCs. The food problem might be a separate issue.

                      But LindaSo's suggestion is a good one: keep track of what's going on at the time of these symptoms.

                      You may want to discuss having a longer-term event recorder rather than just a 48 hr Holter.

                      Gordon

                      Gordon
                      Myectomy on Feb. 5, 2007.

                      Comment


                      • #26
                        Re: At the Cleveland Clinic

                        I'm going to start writing them all down in a notebook when they happen and he can keep a little log in his office too. I think you're right about the holter... he might need to wear one longer to catch what's really going on so we know if it's something harmless like pvc's or something else. My dad has afib and I've been with him when he got it and had to be hospitalized it was so bad. My husband's pulse feels pretty similar during these episodes he has so my suspicion would be that it is afib or something else.

                        How can you tell the difference between afib and the other dangerous arrhythmias like vtach? I don't know much about that... maybe only a holter could tell?

                        Comment


                        • #27
                          Re: At the Cleveland Clinic

                          It mght be afib and it could be something else. Do the episodes last very long? If he has time, maybe he can try to do the valsalva technique. You kind of bear down like you're having a bowel movement. Sometimes that will stop these odd beats, but it won't affect them if they are short runs of afib.
                          Reenie

                          ****************
                          Husband has HCM.
                          3 kids - ages 23, 21, & 19. All presently clear of HCM.

                          Comment


                          • #28
                            Re: At the Cleveland Clinic

                            I have been on beta blockers for three months. I hate it.

                            Comment


                            • #29
                              Re: At the Cleveland Clinic

                              We talked about it, but he is not ready for me yet. Why would they want phase 2 cardiac rehab prior to any surgery?

                              Comment


                              • #30
                                Re: At the Cleveland Clinic

                                Philip,
                                I'm not understanding "but he is not ready for me yet". Is this the right thread that you posted in?
                                Onward and Upward !

                                Diagnosed 4/07 HCM with fixed & dynamic obstruction
                                Myectomy with resected cordonae tendonae 4/08 CCF
                                ICD 10/08

                                Comment

                                Today's Birthdays

                                Collapse

                                Working...
                                X