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  • Back from Specialist

    Hi,

    I'm not in a good mood, been kind of cranky. It's b/c I have this holter monitor on to assess if I am at risk for Sudden Death, which the specialist said that from talking with me and my symptoms that I don't seem to be. Luckily this annoying holter comes off tomorrow. I'm sure everyone's had to wear one though, right? Grr...mumble mumble...

    From speaking with the specialist though, I feel like I have been getting the right course of care locally. I'll know more mid week next week when the specialist calls with the echo results and holter. I don't know why, but I'm nervous about the results.

    Okay, about the medication. Not much help there. I mean I am afraid to switch from Inderal LA even though it may be the exact cause of my symptoms (i.e. diarrhea and intestinal pain). I did discuss the medication with the specialist of course and told him that I didn't want to switch right now. He was okay with it, but said that he didn't want me to have symptoms (again I liked him). Also, that Inderal LA is a good drug.

    He did mention Verapamil or something that started with a K. Anyone know what the K one might have been? Also he mentioned not taking a beta blocker at all. Has anyone ever heard of this? He said you only really need it if you are having symptoms. However, I feel that I would have symptoms without the beta blocker. I mean when a doctor who works where my local cardiologist is switched me to Inderal LA 80mg twice a day, my SOB went away and that is good.

    I'm thinking about Toprol XL, however he didn't mention this. It may not be the right one for me.

    The Specialist I went to was more attentive and understanding. Right now, I feel that the trip was disappointing and that the same thing I had done there could have been done locally. The only other plus I could come up with is that the nurse asked the right questions and didn't make me feel worse than I all ready do. I mean sure, I know I am underweight, have a poor appetite (unsure if Inderal LA related and yes I mentioned it)...

    I do feel better that someone paid attention to me though for a change without feeling scared to fess up the symptoms. I guess I felt comfortable with the Specialist and Nurse whom I've met only one day. The local cardiologist doesn't make me feel as comfortable on some of the times I go there. I haven't felt like he'll listen due to the mention of alcohol ablation, which the Specialist said is not for me b/c I am not on the severe case for that. Perhaps the local meant down the line in case I need it...

    As you may tell from some of my posts, I am a nervous patient.

    Sorry, this was so long. Hope all are doing okay!

  • #2
    Re: Back from Specialist

    HI,

    Wearing a Holter monitor has to be one of the most uncomfortable things in the world! I sleep on my stomach and sides, and i also tend to do a whole lot of rolling around in my sleep, so needless to say i didn't get a lot of sleep on the occasions i was asked to wear the monitor. I've never made it through the night without ripping off some of those darn leads. I am amazed in fact, that they were able to get any comprehensible results from my Holter monitor!

    Don't get your heart set on Toprol-XL, or any other beta-blocker for that matter. It just takes a lot of experimentation. Toprol-XL has worked wonders for a lot of people, but in some cases it was not so good. Keep your options open, and work with your cardiologist to find the one that works best for you. Be aware of how it is making you feel, and let your doctor's know when you feel any changes in how you feel, either physically or emotionally. Beta-blockers can effect both.

    As far as the Specialist issue is concerned... i'm not going to comment on that for fear of having everyone throw rocks at me... but bear in mind that nobody knows your own body better than yourself. Be sure to keep the upper hand when it comes your care, and ask LOTS and lots of questions.

    Hope you get things straightened out soon. Everyone is here for you

    Jim
    "Some days you're the dog... some days you're the hydrant."

    Comment


    • #3
      Re: Back from Specialist

      Anna, I'm guessing that the K medicine you're referring to would be calan. Am I right? That's another name for the verapamil, which is a calcium channel blocker. This class of drugs are sometimes used with HCM, but not always. (Remember that I don't have HCM.) When I had arrhythmias I was always on digoxin - a no no for HCM - and a beta blocker. I've tried Inderal, Lopressor, Tenormin, and maybe more that I can't remember the name of. I did use verapamil for a long time and it worked well for me. The reason I tried to stay away from the beta blockers is that I have asthma and some beta blockers can interfere with asthma. I hope that your monitor is fine. I understand the discomfort too. I had to wear one for 30 days and I'm allergic to the adhesive. I got water blisters on my skin from the darn thing! Now I always wear paper tape instead because it's easier on the skin. Good luck and keep us posted.

      Reenie
      Reenie

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

      Comment


      • #4
        Re: Back from Specialist

        Jim:

        Thanks for your reply. Nah, I haven't gotten my heart set on a beta blocker. As Inderal LA has been my beta blocker for many years and it seems to be working for my heart. I don't seem to recognize any hazardous symptoms, but the prior symptom mention. I don't know right now what to say, but will post back later.


        Reenie:

        Thanks for your reply too. I'm not sure the drug is Calan, it sounded different than that, like Kilnser or Kilner. I don't know (?) The monitor is a real pain. I have sensitive skin and the things are so itchy and I can't scratch. I know its gonna hurt when I have to take them off too. Those water blisters sound painful.

        I will keep all posted as time goes on.

        Comment


        • #5
          Re: Back from Specialist

          Anna -
          I understand your concern for not wanting a switch in the meds. But I would suggest you keep an open mind at the option someday.
          Re your feelings about seeing a specialist, it is common to have grand expectations and feel a little let down that there was not magic answer. It seems to me that you did see the value in speaking to someone who knew what HCM was and could assist you with matters specific to HCM.

          I am also on the "uff da" not a holtor monitor club! Yeh they are a pain but can provide a great deal of information.

          Off to the next posting...

          Be well,
          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

          Comment


          • #6
            Re: Back from Specialist

            I wasn't really expecting anything magical to happen. I guess its a good thing though that the Specialist didn't say anything different from my local cardiologist. It means they are doing a good job, right? I'm anxious to hear the test results. I do have an open mind on the med issue, but when it comes to my heart and its function, I have to stay on what works, right? Someday, yes, there may be need to switch, but right now, I don't know. Yes, I saw value in speaking with someone who knew about HCM and someone who was listening to me. Also, he is doing a study that leaves your name out, but information in-to help diagnose others with HCM. I of course signed up.


            Take care, Anna

            P.S. Phew! Finally got the itchy holter off and what a relief!

            Comment


            • #7
              Re: Back from Specialist

              I'm due to go in on Monday for another Holter...I know what you mean. I get SO nervous waiting for results. I've been getting a lot of those "skipped beats" and hoping it is a med adjustment and/or change. I'm taking Atenolol...have been for many years and has worked well up until a month or so ago...
              \"It is not length of life, but depth of life.\"

              Ralph Waldo Emerson

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              • #8
                Re: Back from Specialist

                Cynthia:

                I hope it goes well for you. Skipped beats may be med related. Let us know how it goes.


                Take care, Anna

                Comment


                • #9
                  Re: Back from Specialist

                  Anna, I was on Inderal for 30 years and when my doc suggested I try something newer (Atenolol) I also had mixed feelings because I felt I was doing well on Inderal.
                  He said try it and if I didn't like it I could go back to Inderal or try something else.
                  Right after stating Atenolol my diarrhea and cramps went away immediately and honestly I felt better on Atenolol.
                  So don't dismiss the possibility of a change in the future.
                  Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                  So if you are capable of thought then you are capable of great things
                  Good luck and stay well.
                  Glen

                  Comment


                  • #10
                    Re: Back from Specialist

                    In my experience sometimes you don't know you are sick until you feel better.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: Back from Specialist

                      Glen:

                      I remember you saying your symptoms on Inderal and thank you for posting. I really do take it to heart and yes have thought about switching, that is why I brought it up to the specialist. However, at this time, I am not ready.

                      Reenie:

                      Yeah, I know you don't know your sick until you feel better. That's how I was on the Inderal LA. The doctor I had used to have me on only 60mg a day, which really wasn't benefiting me at all. I felt awful, though didn't know a med change would help. I finally got a new doctor who upped the dose to 80mg twice a day to equal 160mg and my SOB went away. Wow! Now the intestinal pain and cramping really isn't everyday. I could go weeks or months without it. So it may not be the meds after all, you see?

                      I'm thinking that it is in fact IBS b/c when I get stressed, nervous, or whatever it triggers it instantly. It's a reaction that really isn't pleasant. I'm trying to increase my fiber and watch the foods I eat to see if this helps. If not I will go and see a GI doctor and if not beneficial there, try the med change. I got to rule all that out. Also, me being underweight and on the dosage that I am on, I would think plays a part in it as well. I have such a poor appetite and have found out that I have Sinusitis, which I think causes this and will have to get a nasal irrigator to see if that works.


                      Thanks everyone for listening, Anna

                      Comment


                      • #12
                        Re: Back from Specialist

                        Test results are in everyone...the Specialist called me today and said that the holter looked fine and that I think there were no abnormalities. Also, the echo looked good, not severe, he said.

                        I did ask for my gradient though and he told me 45mm and that it wasn't bad. It's best to keep going to the cardiologist regularly though...The Specialist does want to see me again in a year though. Phew, that is a long ride to me though. However, I've got plenty of time before the next visit...

                        Comment


                        • #13
                          Re: Back from Specialist

                          Great news, good for you.
                          Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                          So if you are capable of thought then you are capable of great things
                          Good luck and stay well.
                          Glen

                          Comment

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