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Trying to make sense of it all!

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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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  • Trying to make sense of it all!

    I'm just curious and need some advice I guess.

    The past couple of weeks seem to have been going pretty well. I've had more energy than ever before and I feel like I can do more. The lathargic feeling is all but gone.

    The downside. I have been having more episodes of chest pain. On Tuesday night I had a bad bout of chest pain. I wasn't even doing anything I was sitting for lecture in class. It came on all of a sudden It hit so hard that my professor even noticed it. I told her I was ok and she sent me home to rest. I got half way down the hall and I got dizzy and short of breath. So I sat down, shortly thereafter class was over and she came out and saw me in the hall struggling with my pain. She got security and so 911 was called. As usual they took me to the hospital.

    I thought that this would just be the standard chestpain incident but it got strange. Normally, my pain is just a really bad heavyness that is centered in my left shoulder area and migrates down my arm. This was the most intense pain I had ever felt. I was in tears from the pain and I panicked. I felt down right scared like I might die or something. It was a severe crushing pain like the hugest elephant stomped on my chest. After 4mg of morphine it went away. My heart rate was high 140 but was in a sinus rhythm.

    So I guess my question is am I getting better or worse. Overall, I feel better but the attacks come more frequently now. What should I do! I am also still having the episodes of high heart rate at rest. There are times it jumps to like 130 without me even moving. I have a strong awareness of my heart beat and it doesn't feel right. Even a girl in my class for work noted my irregular heart beat.

    Mary S.

  • #2
    Re: Trying to make sense of it all!

    Mary, I don't know what any of that could mean. I just hope you get the answers that you need. I am sorry that you are having problems. You are in my thoughts and prayers.
    Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

    Comment


    • #3
      Re: Trying to make sense of it all!

      I'm so sorry you are having problems again. Only Dr. Maron can explain this one. I've had acid reflux that felt like a heart attack, so make sure you are getting enough fluid and non-acidic foods.

      and keep us posted.

      S

      Comment


      • #4
        Re: Trying to make sense of it all!

        Sorry to hear that you were in so much pain. Have you been working, going to school and running around a great deal??? Mary - I know you and while I have no idea why you have so much chest pain (I wish I had an answer for that one)... I know you drive yourself a bit too hard. Please take care of yourself..and DRINK WATER!

        Big hugs,
        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


        • #5
          Re: Trying to make sense of it all!

          Well, I talked with my local cardiologist today and we are going to up my elavil to 25 mg. When I have an episode I'm suposed to take 80mg of verapamil and .5mg of Xanax to relax me. I hope this works!

          On another note I get more amazed at how horrible Florida health care has gotten. The primary physician I saw just last week has up and gone. I went to the office today to get my eye checked and it was an entirely new staff. The office had completly changed and it was different doctors. I asked them about my medical record they could not tell me where it was or where the practice went that I had been a patient at. Talk about getting frustrated.

          I finally found one of the doctors who had once practiced there she was one of the good ones. She immediatly agreed to see me. I thought it was my allergies that was bothering my eye but turns out I have scratched my cornea. OUCH! So now I have this big eye patch on and driving is all but impossible!

          Why does this always happen to me

          Mary S.

          Comment


          • #6
            Re: Trying to make sense of it all!

            OK - Mary my messed up little friend ... Time to take a new approach...are you ready?

            I KNOW you have had a great deal of $))^ handed to you over the past year or so. I also KNOW that you have made some great strides in improving your health care, your education and helping others.

            Here is my suggestion - The next time something "not so great" happens - lets look at all the GOOD and positive things that have happened as well.

            I am no fool, I know,in short, most of what we go though STINKS - but we can not let us be dragged down... we have to show it who is "BOSS" and WE are stronger than ANYTHING it can hand us...with this thinking we have the power to LIVE our lives WITH HCM.

            Stay tough! Big hugs!
            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


            • #7
              Re: Trying to make sense of it all!

              Mary, ditto to what Lisa says. Also the cardiologist ? Is he telling you that your anxiety at the time of your chest pain worsens it? I believe per my experience that there is deffinitely a variant of type with regards to chest pain as with location , intensity, etc.. With HCM it seems to follow that garden variety path for those of us who have the small vessel syndrome. I think certainly there are many variables involved in our day to day lives that directly influence these episodes and how or where they occur and how intense . For me self talk therapy like I'm a schizophrenic helps to calm me during these most intense times . Is there some such ritual like visualization or yoga that could help you additionally? It might be worth checking into these relaxation techniques. I'm a tad concerned about the prescription of benzo's to relieve the episodes . I have had very bad experiences with this class of meds with patients as well as close personal friends and family members experiences. At first it seems to work well and everything is going well then boom the person needs more and then more and more and then before you know it the doctor says , "I can't give you anymore." One can get very easilly hooked in and recently I had to watch the painfull longgggg withdrawal from this very med. So be very carefull and try to find some back-up, additional mechanisms. My psychiatrist friend who I worked in-patient and in a clinic with always reminded me of what a tuff withdrawal it was for people. He is a very wise man and has taught me more then anyone in the psych field. Recently in the news you see a lot of controversy about doctors other then psychiatrists prescribing meds for depression , anxiety and such? And they are trying to harp on antidepressants leading to suicide in some individuals?Well the reasoning is that , sometimes the disadvantages occur with these med uses and it can be directly attributable to the individual not being cautioned or taught about or followed close enough for the issues that cause the problem they are medicating. Sort of like a diabetic taking insulin but not being followed or taught about checking the blood sugar or managing his or her diabetis. There is legislation trying to change this and put prescribing meds that effect the psychy back in the hands of psychiatrists. Certainly there are pros and cons to that as many of them are Quacks ,just like some medical doctors are worthless. So just wanted to offer you some help here . Mary, I in know way tell you not to take the Xanax ,just be carefull and do your homework. Feel better and I care. 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


              • #8
                Re: Trying to make sense of it all!

                Mary,
                I’m on vacation now. Would you please stay well at least long enough for me to get home and we could IM again?
                Gramps

                Comment


                • #9
                  Re: Trying to make sense of it all!

                  First of all Lisa! Trust me I'm not depressed or anything like that. I know especially on the boards it may seem that way. That is because it is just about my only way to get out my not so good feelings. It seems as if no one around me wants to see my weak side. "Mary is the tough one, she can get through anything!" If I show my emotions then they don't feel comfortable. That's the only way I can explain it!

                  I am having a great week. My new job is awesome! I absolutly love it. The twelve hour shifts are not posing a problem right now. You know what was nice to hear too. I asked my manager if there were certain days that she thought would be better for me to go to school. She told me to pick my classes and they would work around it! I'd never hear that at Disney!

                  I am a bit concerned about my medicines though. Pam you said the Xanax was very addictive. Is that even if my episodes happen less than once a month. I am definatly not taking them often and it is only a last resort! At this point in the meds we are giving everything a try!

                  I am also a bit leary about the elavil which is priamarily an anti-depressent. My local cardiologist said that it had worked well in his angina patients because it had vasodialation properties as well. I looked up the possible complications and this is what was listed:
                  Quinidine-like effect and other non-specific ECG changes and changes in AV conduction, prolonged conduction time, asystole (boy I hope I don't get this one! ), hypotension, syncope, hypertension, palpitation, arrhythmias, heart block, ventricular tachycardia, fibrillation, myocardial infarction, stroke, unexpected death in patients with cardiovascular disorders.

                  I discussed the medications with Dr. Maron and so did the cardiologist and he gave them his blessing. Dr. M. Maron also told me I'd better hang on to this cardiologist because he is good! With that said should I ask about the side-effects I've been having tachy episodes and Dr. Maron wants an event monitor done to see if we can catch them. He thinks it could be a-fib. Could this just be a side effect of the meds?

                  Wow what a long post. A lot of questions I guess!
                  Thanks for caring,
                  Mary S.

                  Comment


                  • #10
                    Re: Trying to make sense of it all!

                    You are correct Mary for once a month or so the Xanax should be fine. As for the Elavil, it is a tricyclic anti-depressant and works in particular on serotonin and norepinephrin reuptake. In this re-uptake the enhanced levels of these chemicals can cause a raised BP. It was one of our general rules to avoid prescribing tricyclics for patients with a known heart problem as in coranary heart disease or having EKG changes or history of myocardial infarction. As you do not fit into the blockage category and you have many baseline EKG's to monitor for changes, a little bit of experimenting might certainly be in order to try and help you. Your cardiologist might just find the right mix for you. Keep track in writing any change, increase of symptoms so you can discuss the whens and whys with your doc. He sounds to be like Dr. Maron says a possible keeper. He is at least trying to help you more then others have in the past, right? Best Wishes. 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


                    • #11
                      Re: Trying to make sense of it all!

                      Mary do I think your depressed...Not at all, I think you said it clearly yourself that others want you to be "tough" so that is all you show them. PLEASE allow yourself to feel your emotions without attempting to make others feel comfortable. Keeping these feelings IN can really cause a great deal of stress on your system.

                      I am thrilled to hear about your new job going so well!

                      Stay 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

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