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cynthiaG Find out more about cynthiaG
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  • Toogoofy317
    replied
    I posted that I have a busy life and if you know me I'm not lying. A typical Monday for me is: getting up at 6:00 AM to make it to my cardiac rehab by 7:15. I exercise there for about an hour and a half. I then have work at 9:15 which I also have to shower before I get there. I work from 9:15 till 6:00 and then I have school from 6:30 until 9:15. I typically get home around 10:00 take a shower drink a cup of tea and am dead to the rest of the world! Anytime I get a chance to nap I take it. Granted all of my days aren't quite this hectic but it is enough for me! Of course I'm giving my cardiologist more than his fare share of worrying and my boss who is like a dad to me said he was going to make me take a vacation if I didn't slow down! Yeah right . Honestly, I think even a normal person would be pretty tired after my Monday's

    Mary Sharp

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  • liona
    replied
    Heat Intolerance

    Well, Folks, I can't take heat or sun, but I thought that was because I am and Norwegian, and I have a tethered spinal cord.

    Now you tell me it is because I am HCM!!! And I thought I was too old to loearn anything new about myself!!!!!!!!

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  • annamc
    replied
    Toss and turn all night, doesn't matter which side I sleep on!

    Yeah, heat intolerant too!

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  • mtlieb
    replied
    Hi Bob,

    That's really good advice. I've always been a side sleeper as well. Being a heavy drinker most of my adult life i've developed some pretty bad eating habits... eating late at night, and not the best food either (nobody gets drunk and eats a garden salad). I've put the drinking aside, but the eating habits are hard to break

    Anyone know of a good formula that's worked well for them? No food after 6:00 pm, etc. ? It's been suggested that i might try taking my Toprol at night before bed rather than in the morning. Anyone know of any problems with this?

    Someone suggested in a previous post that since they lead a full busy life, that they don't have sleeping problems. I'm not exactly a big fat lazy slob here. LOL. I've worked pretty hard ten hour days out in the field for over ten years. It's not that i'm not tired

    Jim

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  • Robert Hartwell
    replied
    I wanted to add a comment on left side sleeping. The comments I have read here are interesting since I have always been a "side" sleeper (can't fall asleep on by back or front).

    Prior to my surgery, there were certain conditions which would cause my heart to beat "hard". The big one was a large late meal just prior to bed. At that point it did not matter which way I was sleeping, I could feel and hear each heartbeat. The only way to sleep was in an easy chair.

    After surgery, and watching my meal portion size, I have not had an incident of "hard" heartbeat on any side. I find it a relief to be able to fall asleap on my side again.

    Bob

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  • Toogoofy317
    replied
    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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  • Lisa Salberg
    replied
    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

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  • mtlieb
    replied
    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

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  • Lisa Salberg
    replied
    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

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  • Sarah
    replied
    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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  • SheliRenee
    replied
    Thanks Sarah -

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

    SheliRenee

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  • Sarah
    replied
    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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  • Dolly W
    replied
    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!

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  • SheliRenee
    replied
    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

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  • Pat
    replied
    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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