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cynthiaG Find out more about cynthiaG
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  • heat tolerance

    I just happened to read about Tim Stewart's trip to Sanibel Island.....and how he mentioned that his wife who has HCM (didn't know that at the time)...had intolerance to the heat. I too, have for some years now and seems to get worse as I get older...anyone else feel the same? When it is 90 degrees and humid, I can;'t take it! I head inside the house with the AC running. I feel like I slow down in the heat
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson

  • #2
    see glucose thread

    There are a number of things we almost all share: can't sleep on the left side, need sugar levels to be solid, and sun intolerance.

    The heart is a key player in your heating and cooling system. It doesn't run great, so neither does the internal thermostat. I overheat at the drop of a sun hat in August.

    S

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    • #3
      that's funny that you also mentioned about sleeping on your left side...I always either sleep on my right side or stomach. I can always feel the flip flops when on my left side...although lately I can feel a few on my right sometimes, but that's that way it's always been for me. I remember mentioning that to my former cardiologist and If I remember correctly, it had something to do with organs being in alignment? unless you know something else...but the heat, I always told my husband that I would never move down south because I could not tolerate the heat.
      \"It is not length of life, but depth of life.\"

      Ralph Waldo Emerson

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      • #4
        Regarding the heat, I will never know how I made it in school through years of being in color guard/marching band and drill team in which I marched/ran/danced outside all summer long on black top and football fields!

        The heat always seemed more than I could stand but I guess I thought I was either a whimp or that everyone was that miserable! We had such a scorcher of a summer last year that I felt like I missed the entire season being stuck in the AC (and now I'm stuck in the house from all the snow) However, now Tim and I take our 'southern' trips in the cooler part of the year which is actually a plus since it seems like such an indulgence in the winter months!

        I also had to mention something about sleep positions and feeling my heart beats; until I was diagnosed with HCM I thought everyone was like that! I felt so naive after the diagnosis, all those 'little things' that I took for granted as being normal weren't - and here I thought I was a fairly intelligent person

        Isn't it just fabulous all the little idiosyncracies HCM brings to our lives...
        Lynn Stewart
        HOCM 4/2002
        Cleveland Myectomy Crew 8/2002

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        • #5
          Interesting... i've never been able to tolerate the heat, but never made a connection to HCM. I've always said my ideal temperature was around 65 degrees. Much over that and i'm pretty miserable
          "Some days you're the dog... some days you're the hydrant."

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          • #6
            Living as I do in the low desert, heat is always a big factor between April and November. Over the past 20 to 25 years, along with my other symptoms, my tolerance for heat decreased and decreased and decreased. . . . I now am fairly well confined to staying in air conditioning for much of the day in summer. And I cannot say I like it very much.

            In hot weather or direct sun one's capillaries (smallest blood vessels) near the body surfaces dilate substantially--filling with blood--to assist the body to stay cool. This is a normal cooling mechanism for all humans. The explanation one cardiologist gave me was that this creates the same situation in an HCMer's heart as severe dehydration--there's just not as much blood returning to the heart so the left ventricle doesn't have enough volume to pump out. This happens even if we are well-hydrated. But it is even worse if we are NOT well-hydrated!

            Pat

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            • #7
              This thing with sleeping on the left side. Is it bothersome? Painful? Since Keanu doesn't talk yet, I am totally unaware of what he's feeling. I can see the obvious sweating and I can see when he slows down his activity and watches a video to rest up.

              Anyway, Keanu nurses at night still... I recently broke him of nursing during the day, but I can't just put him in bed and let him scream himself to sleep. When he nurses during the night he lies on his left side next to me. Should I switch sides so that he's on his right?

              Thanks,

              SheliRenee
              Mom of Keanu
              4 years old (will be in March)
              Dx at 2 days old with Biventricular hypertrophy
              Dx at 6 weeks with HOCM
              Dx at 5 months with V-tach
              Dx at 3 with Noonan Syndrome

              Comment


              • #8
                Sarah,

                Exactly what did you mean by "sun intolerance"? Was that in reference to the heat or actual sunburn? Not only am I intolerant of the heat, but I have gotten sunburn sitting inside a house near a window!
                HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07

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                • #9
                  sun, heat, and life

                  Dear Shel,

                  We don't sleep on our left side b/c our hearts beat so hard that we feel it when we lie on that side. Not painful, not dangerous --just really annoying to feel every single beat of your heart. Your little one will let you know if he doesn't like his left side at some point.

                  Dolly --it is possible to get a burn through a window--albeit a little rare. There are some meds that make you more prone to getting burnt--amiodarone is the biggie in that category. I'm from a long, long line of Irish/British/French and have about as much melanen as a peanut. I will burn very quickly -always have. However, I overheat, too.

                  From Loyola Medical Center:

                  heat exhaustion - a form of heat-related illness that is more severe than heat cramps and results from a loss of water and salt in the body. It occurs in conditions of extreme heat and excessive sweating without adequate fluid and salt replacement. Heat exhaustion occurs when the body is unable to cool itself properly. If left untreated, heat exhaustion can progress to heat stroke.

                  heat stroke - the most severe form of heat illness and is a life-threatening emergency. It is the result of long, extreme exposure to the sun, in which a person does not sweat enough to lower body temperature.

                  I ALWAYS wear a hat outside from May to September and keep a bottle of water at my side and wear layers (since this is Chicago, you go from 90 outside to 65 inside when someone cranks the air up). And wear SPF 30 at all times.

                  S

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                  • #10
                    Thanks Sarah -

                    I'm glad it wasn't hurting him in any way.

                    SheliRenee
                    Mom of Keanu
                    4 years old (will be in March)
                    Dx at 2 days old with Biventricular hypertrophy
                    Dx at 6 weeks with HOCM
                    Dx at 5 months with V-tach
                    Dx at 3 with Noonan Syndrome

                    Comment


                    • #11
                      addendum

                      Hi,

                      RE: Heat Exhaustion, etc. I wanted to point out that while a healthy person might take a long time to get sick, someone with HCM will not. I only need about 20 minutes of really bad heat to ruin the rest of my day.

                      S

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                      • #12
                        My 2 Cents on the heat thing -
                        I am always cold..unless the temp is 75 or better then I am OK...until the temp is 85 or higher... It is worse when it is humid. I find my shortness of breath is far worse, I get very dizzy and even sick to my stomach.

                        RE: the sleeping on the left side thing - I would say ONCE ASKED most HCM'ers do not sleep on there left sides and most do not know why "they jsut do". Here again I am stuck! In 1988 I had a fall down a flight of stairs (ice storm January 1988 - when the siren rings and dad is an EMT and your car is behind his you do not stop to ask what the call is you just move your car!..OH would have help to know the call was "man fell on the ice and broke his arm!!!!!)
                        I landed on my right hip - sprained it - did some muscle damage - it healed THEN about 5 years later...it began to hurt again..only if I slept on my right side..so move to the left..heart beats so loud and strong you cant fall asleep! AHHHH
                        Moral of the story..sleep with the TV on you get so board of bad shows you fall asleep!

                        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
                          Speaking of sleep...

                          I would give anything, and i mean absolutely ANYTHING to get a decent night's sleep. I am the walking dead and believe me it shows on my face. LOL. I was kind of hoping that the Toprol would slow things down a bit and help me sleep, and it does seem that the Toprol has in fact slowed my heartrate. But even when it's beating slow, it is still a very hard and thumping beat. Know what i mean?

                          Any ideas? Humorous anecdotes? Late-night tv suggestions?



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

                          Comment


                          • #14
                            BAD TV is always a good way to fall asleep! Do not watch anything that may interest you in the least!
                            Just about anything on CABLE!
                            all 125 channels!
                            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
                              Down here in central Florida we have the Appliance Direct channel. Some guy with a funny accent that is trying to sell you bent and dent appliances. I see the channel and fall asleep. :P I know on c-band satallite they also have the infomercial channel. IF that doesn't do it nohting will.

                              Fortunatly I do not have this problem I live such a full busy life that if my head ever hits the pillow then I am asleep. Doesn't matter what time of day anymore.

                              Mary S.

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