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Cappy HCM and myocardial bridge patient, also have primary progressive MS Find out more about Cappy
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  • Discomfort Level's

    I have been experiencing discomfort since before my diagnosis (3/2003). It can be on a varying degree and most of the time I just deal with it. When it gets to a point that it really starts bothering me then I call the doctor or I will got the ER.

    I am on a variety of med's and the doc's can't seem to find the right combination

    Cardiac Meds
    • Norvasc, 5mg in the morning
    • Lopressor, 25mg, 3 times a day, 4 if I need it
    • Cardizem, 120 mg, in the PM


    Other Meds
    • Aspirin, 3255mg in the morning
    • Protonix, 40mg, in the morning
    • Singulair, 10 mg, in the PM

    I am curious to hear from other HCM patients and see if they expereince mild discomfort throughout their normal day.

    Thanks

    greg

  • #2
    Re: Discomfort Level's

    Hi Greg,
    I don’t think I’ve experienced varying degrees of discomfort throughout the day at any time in the past. Oh, I’ve had varying degrees of discomfort, sometimes very disturbingly so, but never as a steady diet throughout the day, every day.

    I’m on Verapamil and Atenolol, plus a slew of other meds for my other conditions, but aside from the 325 mg of aspirin I don’t think I’ve ever been on the medications you’ve listed.- I might have – I just don’t remember them. (I was fist diagnosed with a heart condition in 1985, when I had my first heart cath.) By the way, I think that’s the amount of aspirin you men’t to indicate – otherwise I think I know where the problem lays. . . .

    We are each different and react differently to drugs – and everything else for that matter. That’s why it’s sometimes so difficult to get the right doses of the right medications for each of us. Other questions come to mind. How conversant is your cardio with the care and feeding of HCM specifically? What other medications have been tried? Having had the problem prior to your current heart drug regimen I don’t think you’re having a problem with tolerance, but what about your other meds – are you intolerant of any of those?

    Maybe some people do, but I can’t conceive of anybody normally having some degree of discomfort every day, all day – not from HCM anyway. Even my arthritis and bursitis ease off when I sit still for awhile. Sure hope you find the answer soon. If you need some specific support try calling Lisa when she’s available. She’s our resident super authority.
    Burt

    Comment


    • #3
      Re: Discomfort Level's

      Oh Burt you are going to hear a lot on this comment , the one about anybody normally having some degree of discomfort daily. That was my life before myectomy. It was difficult to go through each day let alone endure the discomfort. I very rarely was able to leave home because of it and never alone and usually only for groceries. My brother on the other hand is out and about all day then and now and has no obstruction very rarely a problem with his HCM but complains like he is dying. Post myectomy and removal of obstuction I still have many bad days, but not every day is bad , just everyday is extremely fatigueing. I don't dwell on it or talk about it but just get impatient and let them know about it only if someone expects me to deliver and I can't . I figure I don't put expectations on others so they shouldn't on me. I carry on in "my normal " ability which is no where near theirs. I am now back up to 200 mgs / day of Atenolol, where I was 1 year ago ,6 months prior to myectomy. I think that is how many of us survive and continue to try and always see that glass as 1/2 full and not 1/2 empty, maybe not thinking or talking about it too much helps. Well just my 2 cents. I know you didn't know and did not mean anything by it so it's OK. We're still hcm buddies Burt.. Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

      Comment


      • #4
        Re: Discomfort Level's

        Hello Greg- If you look through the archives, you will find story after story of the varying degrees of discomfort and fatigue many HCMers live with on a daily basis-many of them are an inspiration. Before being diagnosed and put on 100mg of atenolol, my discomfort and fatigue were what I would call very pronounced. My cardiologist hit on the right drug the first time out with me.(Lucky me) As he increased the atenolol by 25mg increments more and more of my symptoms disappeared except for the fatigue and even that wasn’t as bad as before the meds. After almost three years the atenolol no longer seems to be doing the job it once was and my symptoms are beginning to come back. From what I have read in the archives this is not uncommon and many have to find the right combination that works for them and in some cases the drug no longer works and a new one has to be tried. My understanding is that there are many different drugs that can be tried before having to consider other options. I sincerely hope the best for you and that you and your cardiologist will find the right combination of meds that will work for your situation.

        Burt Hi, I know what you mean about being unable to conceive of anybody normally having some degree of discomfort every day, all day, from HCM, since you don’t experience that with your HCM. My 86 year old mother has started developing memory problem due to the meds required to keep her with us. She talks to me sometimes about what it is like living with this devastating problem. Sometimes it breaks my heart to watch her struggle. Even though I see the results, I just can’t conceive of what she is going through. Some things you just have to experience yourself to understand. One more thing Burt, I miss your daily postings on the laughter board they brightened my days.

        Take care. Joyce
        \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
        Pierre Teilhard de Chardin

        Comment


        • #5
          Re: Discomfort Level's

          I definitely have some degree of discomfort every day from HCM. The issue is just how much and how uncomfortable.

          I am now up to 175 mg. of atenolol a day. My doc wants me up to 200, but slowly, like over a year.

          It used to be that I felt discomfort several times a day, and the discomfort was bad. I was very out of breath alot, and I had chest pain fairly often. It was really bad on inclines and on steps.

          Now, the steps are not too bad, and neither are the inclines, but I still have to pace myself. I know what my limits are, and I honor those. As far as discomfort unrelated to exercise, I used to experience angina say once a week, esp. after dinner and when I laid down to go to sleep. Now, I would say its more like once every couple of months, and only if I eat a big meal. I try to avoid doing that, and I am ok. Anyway, in summary I would say I have mild discomfort every day, a couple of times a day, when I go up hills, especially pushing my son in his stroller, and sometimes after climbing stairs.
          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


          • #6
            Re: Discomfort Level's

            Gee folks, I’m sorry. I guess I should have been more specific.

            What I meant to say was I could not conceive of anybody living with varying degrees of pain all day long, every day, and not trying to do something about it – whether that be some form of drug therapy or possibly surgical intervention. I expect every one of us experienced some form of discomfort sometimes – some daily - and on occasion it can be quite severe, but totally ignoring an unremitting pain all day - after day - after day?

            I know it happens with terminal cancer and AIDS patients, and a number of other serious conditions, but I don’t think there are many HCM patients that have to contend with unremitting continuous serious pain without fighting back.

            My father took three years to die of abdominal cancer, and toward the end the doctors frequently ‘forgot’ dangerous medications on his bed table. He stuck it out to the bitter end, and I sometimes wonder what I would have done in the same circumstances.

            All of you who posted have serious conditions – which I did not mean to slight, - but you all seem to be taking steps to alleviate, or at least mitigate your problems. We are a bunch who does not quit easily after all – nor should we. Take care, and I hope to see you all on the boards again soon.
            Burt

            Comment


            • #7
              Re: Discomfort Level's

              Originally posted by Burton Borrok

              What I meant to say was I could not conceive of anybody living with varying degrees of pain all day long, every day, and not trying to do something about it – whether that be some form of drug therapy or possibly surgical intervention. I expect every one of us experienced some form of discomfort sometimes – some daily - and on occasion it can be quite severe, but totally ignoring an unremitting pain all day - after day - after day?
              Burt, I don't think anybody was referring to 'totally ignoring an unremitting pain day after day'. Greg is just trying to get a feel for the different levels of discomfort that with HCM we sometimes must learn to live with. He also mentioned that he is currently experimenting with different drugs, but that 'the docs can't seem to find the right combination'. I'm in exactly the same situation right now with my own treatment.

              Even with successful drug treatment and/or surgery, there is almost always going to be a certain level of discomfort that we experience... sometimes from the surgery itself. How many of us are NOT reminded at least once or twice throughout the day that we have HCM? And for those of us still trying to get our treatment straightened out, the symptoms can be quite constant and disabling. That doesn't necessarily mean we're not doing anything about it... it's just what we have to live with for now until we find a more effective treatment.

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

              Comment


              • #8
                Re: Discomfort Level's

                Hi Jim,
                Okey Dokey. I know what Greg and all the others posted. I was aiming at the others who read the posts but do not generally comment themselves, and in a nutshell I was trying to encourage people in your and Greg’s place, and those in worse places then that, not to give in or settle for what they have now.

                New drugs and treatment procedures are being developed all the time and some cardiologists just can’t keep up to the minute, all the time, with every advance in HCM care. They treat multiple types of cardiac conditions after all – and HCM is generally a very small portion of their practice. It behooves us to be proactive in our care – to do the research and keep up with what’s best for ourselves, be it new or old technology. I think the worst thing we can do is say, “OK, I give up. I guess I’ll just have to live with this the way it is today.”

                Also, in retrospect, I guess I should delayed posting until I had a good night’s sleep and been more alert. I know what I wanted to post, but my tongue got in the way of my eye teeth and I couldn’t see what I was saying.

                Finally, thanks for referring to me as a friend. I believe I have very many friends here – you included, and it’s nice to see the feeling is reciprocated.

                Remember – Illegitimati Non Carborundum – Don’t let the b-stards wear you down.
                Burt

                Comment


                • #9
                  Re: Discomfort Level's

                  Good Afternoon
                  I was reading the posts here, and I noticed that some of you are on the same medication as myself. I was on Lopressor for about 1 year it was a 25mg dosage...I was too tired on it...I went to Atenenol 12.5 mg dose and stayed on that for 4 years. I was wiped out on the 25mg dose. I am now on Verapamil 120mg and it is ripping my stomach apart.
                  It says on the bottle that "It may cause dizziness" Well, with my low blood pressure I was already dizzy. (some say it's my hair color ) I take it in the AM with food also.
                  What are other med's that are good for HCM that maybe I should talk to my DR about? Thanks for your input
                  Have a Wonderful Wednesday
                  Marlene

                  Comment


                  • #10
                    Re: Discomfort Level's

                    Greg-

                    Sorry to hear how you're feeling- ot's difficult to not feel "incontrol" of your Life. I too felt that way, more & more leading up to my Myectomy, last Summer. I was taking a variety of Meds, at different times & always hoped there was a 'Magic Pill"- there isn't! At some point, it becomes time to consider other options.
                    Good Luck
                    RONNIE

                    Comment


                    • #11
                      Re: Discomfort Level's

                      Thanks everyone for the feedback. I will talk to my doctor about Atenolol, and see what he thinks.

                      This is very frustrating to deal with the constant discomfort, especially since I have 2 young children (8 and 5), and they remember how active I used to be with them.

                      I am pretty active for the most part, I ride a bike about 35-45 miles a week, depending on how I feel, which is encouraged by my doctors. I am a former marathon runner (pre diagnosis) so my heart itself is in good condition. I just want to get some alleviation to the discomfort.

                      edited for additional info:

                      Yes ASA dosage is 325mg

                      I am with a pretty large cardiac group in suburban Phila. My lovely bride and I have trekked out to Mpls, and consulted with the man, and saw a local guy from Philly for consults. The only recommendation from Maron, was an ICD for preventive measures only, which I got last August



                      greg

                      Comment


                      • #12
                        Re: Discomfort Level's

                        Marlene

                        betablockers and calcium channel blockers are the two most commonly used families of drugs and you have tried samples of both.

                        quinidine, sotalol, disopyramide phosphate, dofetilide and amiodarone are some others. the last two are not for the faint of heart (sorry for the pun). i mean there are serious side effects to consider.

                        you should be seeing a doctor who knows what to prescribe. if you aren't, please talk to Lisa about a referral.

                        take care,

                        s

                        Comment


                        • #13
                          Re: Discomfort Level's

                          Cappy

                          There is a line between resignation and acceptance. I've been to the Mayo, Cleveland, the president of the American Heart Association and every other doctor in my metropolitan area. They can offer me nothing to improve my quaility of life except a risky procedure that I'm not a good candidate for and none of them are recommending it, just offering.

                          Obviously, I will go to the ER when needed, but there is a lot of chest pain, sob, and fatigue that I just get to have. I don't think it helps me any to push for solutions that don't exist. I don't have the time or energy. I'd rather spend it enjoying what I have.

                          I'm glad you can be so active. Keep it up.

                          S

                          Comment


                          • #14
                            Re: Discomfort Level's

                            Originally posted by Sarah
                            There is a line between resignation and acceptance
                            Acceptance has been the hardest part.

                            Thanks again everyone for the feedback


                            greg

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