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Does anyone take this med?

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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • Does anyone take this med?

    I saw my local cerdiologist today and he started me on a long acting nitrate for my chest pains. The name of it is Isosorbide Mononitrate. Anyone been prescribed this for HCM?


    He also got a baseline test back and it showed my enzymes to be chronically elevated. Anyone else have chronically elevated enzymes

    Any help would greatly be appreciated.

    Mary S.

  • #2
    I don't personally take it but my husbands grandfather is on it. He had a quadruple bypass in '96 and now has a pacemaker. He was having periodic chest pains after the procedure so that is what he has been on ever since. I know it works well for him!!!As far as side affects or what to expect I do not know. He is on several differant meds. for his heart and blood pressure so I'm sure it will work differently for you.
    Good friends are good for your health.
    --Irwin Sarason

    Comment


    • #3
      nitrates

      Hi Mary, I take imdur which is the same thing for HCM. The first few days I experienced headaches and lightheadedness. Since then i've tolerated it well without side effects and my chest pains are gone. Good luck! Becky

      Comment


      • #4
        Good evening, Mary!

        I think you should call your Boston team about this as soon as you can. As far as I know, nitrates are contraindicated for people with HCM. A quick check of my resources at-hand does not tell me why. I simply remember learning that we should not take nitrates for angina.

        And, please let us know what the Boston team tells you about this. Maybe a repeat of the information will clarify it in my own head!

        Pat

        Comment


        • #5
          OK funny thing about the Nitrate issure.. there are a small percentage of people with HCM and very small vessels...in these people some nitrates may...repeat MAY be OK in small doses and if monitored very well. This may be Marys case.
          Call Boston and check with them and let them guide you. This is not a common drug for HCM but for you it may well be the best one for you.
          Best wishes,
          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
            I did talk with Dr. Maron yesterday. He was in concurrence with my local cardiologist. The only thing he changed was the type he changed it to Idodril 10 mg three times a day. The Imdur was 30mg once daily. He said I had to watch my bp regularly and that I would get a headache and possibly light headedness. I am definatley experiencing the headaches and cold not sleep because of it. Oh well if it keeps me out of the hospital.

            Lisa you were right I have the small arteries.

            Thanks for all the help!

            Mary S.

            Comment


            • #7
              Okay. I know very few of you take a long acting nitro here for HCM. But as usual I am as Lisa said "not normal" . But for those of you who do how did you get through the first couple of weeks. These headaches are horrendous ! Yesterday I got really light headed and had to lay down for ten minutes. My PCP prescribed me a powerful drug for the headaches but I can't use them at work which is when I really need them. Any help would be sooooo appreciated! I am getting desperate here!

              Mary S.

              Comment


              • #8
                Mary, the headache is a well documented side effect, but quite often will be covered with plain tylenol. The lightheadedness is something to call your doctor about, as it may be dropping your blood pressure too much. This also is technically a side effect, but one that could pose serious problems for you. So, call your doctor about the lightheadedness before you have to deal with it again, and at the same time, let him know how severe the headaches are. Good luck. Linda

                Comment


                • #9
                  Well, looks like I am going to give a call in tomorrow to Dr. Maron. Something just is not right. I am finally tollerating the headaches but am still getting blurred vision. One particular thing that really scared me today though was when I needed to catch my boss who was about 150 ahead of me. To catch him I had to sprint a little. Well I did and I got almost to him and almost passed out he literally caught me. I felt like my heart was going a million miles a minute and I was very light headed. my skin was very pale and clamy. I am not sure what to make of this. If it is just the medicine or something to do with this great condition.! Any suggestions?

                  Mary S.

                  Comment


                  • #10
                    Ah, Mary. I'm sorry. I have no idea why it's that way for you, but I sure hope you get it figured out soon.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Mary, It could well be a combination of both. Start dialing Dr. Maron's #. Let us know what you work out, and catch the boss by phone next time. I know, it looked easy at the time . Linda

                      Comment


                      • #12
                        Hey...what are you doing running like that to begin with ... WELL???
                        Now let yourself have some time to adjust to all this medication..and remember to be careful.
                        You have to be careful and give yourself time ...PROMISE US your will not do that again....PLEASE
                        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


                        • #13
                          Okay, I promise I won't do anything like that again. I think it scared me just as much as my boss John (who is my biggest supporter through this). Trust me after I laid down rested for a bit boy did he let me have it. And yes I deserved it.

                          I guess I am still having a struggle trying to adjust to this. It has just been a year since the diagnosis and to those who know has been a hard year with a lot of trials and stresses. I'm 22 and have had my world turned upside down. I have no family other than the one at work, so alot has been done alone. But in my real time of need there was always an angel there wether it was my boss John or Lisa calling me at the exact moment I needed to talk about this problem. If only I could stop being so competitive though. I think it runs in my blood and EMT school just fueled the fire. I am so desperate at this point to find a job in my expertise now that I just can't stand it anymore.

                          Oh well thanks for letting me get it out!

                          Mary S.

                          P.S I will never do that again

                          Comment


                          • #14
                            I am glad to hear that you are not going to try that again
                            Now RE: your 1st year of living with HCM - the first one is often the worst one. So much to adjust to, go many doctors, so much information...anyone can hit overload!
                            You do need to take a step back and just have fun from time to time and put HCM in the back of your mind,,while still remembering to be careful.
                            Take a deep breath... put the pieces together one by one and you will be much happier!
                            All the Best!!!
                            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


                            • #15
                              I took your advice Lisa! I am going to take a complete vacation from school and work. I have not had a real vacation in such a long time. Seems strange to say that living in the vacation capital of the world. In a couple of weeks some friends and I are going up to blue springs state park to unwind and have some fun. it is long overdue. Thanks for the idea.

                              Mary S.

                              Comment

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