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CeeBee Diagnosed with HCM in May 08; ICD implanted August 09. Find out more about CeeBee
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  • Question about chest pain

    I have a question for other HCM-ers. I experience chest pain. It's not excrutiating, and it's not so often that I'm always in pain, but it's becoming frequent enough and painful enough so that I wanted some information from my cardiologist. I described it to the cardio as pain that's exactly mid-chest, feels like pain and pressure combined (rather than sharp or searing), happens at odd times not necessarily related to exertion, meals, etc., and not heartburn, which on the rare occasions I've had it feels very different. My cardiologist responded, "that's not your heart, that's unrelated. That's your esophagus, or who knows what, but that has nothing to do with your heart."

    This cardio is not an HCM specialist, but good otherwise, and he seemed so certain that I was taken aback, and thought okay, hmm, maybe some psychosomatic something . . . but th pain was back today, and it's SO characteristic (?) or something that I decided to ask the board. I know that chest pain IS on the list of HCM symptoms . . . would someone mind sharing, odd as this sounds, a description of what that pain's like? Is it at least possible that mine is from HCM?

    Thanks.

  • #2
    Re: Question about chest pain

    I get all different kinds of chest pain. Sometimes it is like you describe, pain and pressure. Sometimes only pressure. Sometimes it is sharp pain that goes away after a few seconds. Sometimes it is a pressure/discomfort in my throat or in my jaw. They are all variants of chest pain I think.
    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


    • #3
      Re: Question about chest pain

      I get very frequent chest pain with my HCM. For me the description of someone standing on my chest is very accurate. Same as you it can be with exertion, a stressful situation, having a big meal, and sometime sitting on the couch.

      My problem according to Dr. M.Maron is microvascular disease in conjunction with the HCM. For me it can become very debilitating and puts me in the hospital frequently.

      Hope this isn't your problem because we've not been able to properly treat it due to my low bp and other factors.

      Mary

      Comment


      • #4
        Re: Question about chest pain

        When I was obstructed the pain felt like a hard board pressing at the side of my sternum. It was relentless during certain times that I would have it and usually when trying to rest but I could get it to subside a little with positional changes that seemed to allow more oxygen in and sometimes with deep breaths being taken.
        This is how I discovered in the days before diagnosis that taking an extra small chip of my beta blocker would help. I then researched that when an individual has a history of chest pain that a little smidgeon dissolved like NTG may help with the CP . I talked to my HCM doc and he agreed. I also have microvascular syndrome with my HCM.

        Following myectomy. I have found it to present as a gnawing aching pain in my left arm and shoulder area .. sometimes with this I also get a tingling numbing pain in my jaw and left face. Often times the pattern is.. I get my chest pain while just relaxing and trying to recover from a difficult; physically or emotionally tiring, day. Also a ride in the car with my son driving will do it! LOL! My son will say, mom you are fidgeting in your seat .. are you having chest pain. He is right I am not good at hiding it around family although I rarely tell anyone while I am having it as painful as it can sometimes can be.
        At night what works usually is to go lie in bed and put my breathing ( bi-pap ) machine on and the forced room air makes it go away and I often fall asleep.
        I also get this same quality of chest pain when I go into a-fib. and the machine will not take it down.

        I think it is important to try different things and see if it takes it down. With that you will be able to prove to your doctor that he is incorrect ... if it is chest pain related to heart issues and that it needs to be addressed.
        The concept of chest pain with HCM still is problematic over time as the conversion of healthy tissue to scarred fibrotic tissue as apoptosis ( cell death) takes place,can be contributing to progression of the disease.

        I hope this helps.
        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


        • #5
          Re: Question about chest pain

          I just saw my doctor at the HCM Center at Stanford Hosp. in CA. I discussed the daily chest pain which feels like someone stepping their heel into your chest and applying pressure, upper mid chest. His nurse told me that if you walk and sit down when you feel it, it might be because your diaphragm is compressed which may cause a slower blood flow back to the heart or change in blood volume. His fellow said that one of the reasons may be because I have heart failure, my heart being stiff, is having trouble filling and pumping the blood out of my heart.

          My sister who had burnt out couldn't bent over and pick up things because of chest pain.

          P.S. Because I'm showing fibrosis in my MRI - In addition to a small dose beta blocker and ace inhibitor, the doctor has decided to start me on a mild diuretic called spironolactone. The objective is to possibly slow down my heart failure and further fibrosis.
          HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
          Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
          Sister @ 41 got heart transplant on Valentine's day 2002
          Oldest sister, diagnosed with HCM in 2010
          only niece cleared by genetic testing; son not genetically tested yet
          Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
          maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.

          Comment


          • #6
            Re: Question about chest pain

            To answer your question, most certainly it could be heart-related. Our regular doctors and cardios sometimes have a hard time believing that there is such a thing as a 'normal' amount of chest pain associated with HCM so they're quick to dismiss it. That, and they probably feel that if it were 'real' chest pain we'd be freaking out a lot more than we are. Darn that HCM... making us look like a bunch of hypochondriacs. I haven't read your other posts but have you been seen by an HCM specialist? They can be helpful in sorting out what's 'normal and expected' for you versus what should cause you concern.
            "Some days you're the dog... some days you're the hydrant."

            Comment


            • #7
              Re: Question about chest pain

              Thanks to all of you for the information. It really helps to get the perspective. I think this chest pain IS related to the HCM. Also, I do have a fairly significant obstruction. I like the description of "someone putting their heel on your sternum" -- yep, it's like that! (hey, who's the clown standing on my chest???) I'm going to try the sliver of beta blocker. And mtlieb, in answer to your question, I was at Mayo once, and met the really fabulous Steve Ommen and Caroline Arpen. There's an NP here who's very good, so I'm going to see her, but I will also head up some time this summer or fall for a re-visit to Mayo. I want to PREVENT things getting worse, not wait until after they do.

              Thanks for your input all.

              Comment


              • #8
                Re: Question about chest pain

                I definitely get chest pain. Since I started on the usual drugs it feels more like a burn and less like an ache, if that makes any sense.
                http://www.active2030folsom.org

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                • #9
                  Re: Question about chest pain

                  MY HUSBAND HAS HOCM - AND WHEN HE CUTS THE LAWN HE FEEL A MILD PAIN IN THE LEFT CHEST WALL ALONG THE MIDAXILLARY LINE AND SOMETIMES DOWN HIS LEFT ARM TO HIS ELBOW...HE SAYS IT IS MILD...BUT IT'S THERE...THIS PAST SATURDAY HE BOLUSED HIMSELF WITH 1000ML OF WATER BEFORE HE STARTED CUTTING THE LAWN AND THEN DRANK ANOTHER 1500ML OF WATER WHILE CUTTING THE LAWN AND NO CHEST PAIN! FIRST TIME EVER.

                  HOPE THIS HELPS SOMEONE.

                  Comment


                  • #10
                    Re: Question about chest pain

                    As long as one is not in HF and it is not too humid out but I would not generally recommend that to get through an activity that in and of itself could result in a Sudden Cardiac Death for someone. I do not believe there is any physiological connection to why that method worked to prevent chest pain from coming. The increase in fluid could have even brought on chest pain for some or caused a wash out of electrolytes . Dangerous. HCM is a fickle disease that on some days with some activities there are awful symptoms and then on another day without too much difference one may do great and experience little difficulty and minimal to nil symptoms.

                    The obstruction is dynamic in that it will not always be the same even with the same activity. When I was obstructed that pain was an indication that I needed to stop or not do that activity. Often times the walls of the heart can come very close to closing in and touching when there is an obstruction and dehydration is an added risk with that. When I was first diagnosed I was cautioned as to always be well hydrated and to back off from activities that brought that sensation on as I had a huge gradient and cardiac collapse was a risk.
                    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: Question about chest pain

                      My son, who has HCM, complains of the chest pain when he has to walk a longer distance or if he is just "shooting some hoops". Like Barbara Rose commented on, as long as Ryan drinks plenty of water before and after such an activity his chest pain is greatly reduced if not completely gone. He also complains of a headache as well
                      Theresa
                      Mother of 2
                      Son-Ryan Diagnosed w/ HCM at age 18 also
                      tested postive for the HCM "marker" w/ genetic testing
                      Daughter-Amy-negative for HCM
                      2 grandchildren-Elijah and Brielle - negative for HCM

                      Comment


                      • #12
                        Re: Question about chest pain

                        Yes, all points to dehyration and the left ventricle feeling it during activity. It is a good thing to always increase hydration during activity just so we are not doing it instead of listening to the symptom that may be telling us to stop or slow down as well as hydrate.
                        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

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