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dag NABBIT!!! i need help!?

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  • dag NABBIT!!! i need help!?

    stupid medicine!!!!! someday i might be alright but not this month!!

    ok when i was first dianosed with HCM i was on atenolol and it KILLED me...hit me like a wall and me feel SO dead it was nuts and didnt help symptoms at all. after a month of that i was put on Verapamil ang it definatly helped my symptoms but now that its hot and sticky out it doesnt even touch them and makes me dizzy every time i stand up (i already have borderline-low blood pressure and the meds drop it too) in on a very low dose (120 mg) and i want to raise it to help symptoms, but i cant stand being any dizzier than i already am...and ive been on it for like 3-4 months!

    so here are my questions....
    1: are there any other medications i should ask my cardio about hat might help?

    andddd
    2: how do i know if the dizzyness when i stand up is from my meds or HCM itself? it seems to have gotten worse with verapamil but im not sure which one is the larger offender....

    what do you think? thanks for ANY help you have!!!
    ~janelle*
    \"The heart swells at the magnificance\"

    1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

  • #2
    Re: dag NABBIT!!! i need help!?

    I don't know what to recommend, but I have the same problem. I take 175 mg. of atenolol, and often when I stand up too fast, or if I go to a standing position from a lying down position and don't take time to do it slowly, I feel like I am going to faint. All I can tell you, is that it is hard to find a perfect balance. If you feel better with the verapamil, try getting up slowly and acclimating before you start walking.
    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.

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    • #3
      Re: dag NABBIT!!! i need help!?

      Hi

      there are several types of betablockers and put only a couple calcium channel blockers.

      i find that if I just move slowly, the dizziness isn't a problem. for example getting out of bed in the morning --i sit up, wait ten seconds and then stand. this works really well for me.

      the other thing is to drink a ton of water to keep your bp up.

      or to consider potassium channel blockers --norpace-- but those are very strong and have to be started in the hospital.

      good luck,

      s

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      • #4
        Re: dag NABBIT!!! i need help!?

        It may not be the meds - it may be dehydration A simple trick is to make sure you have salt each morning and drink at least 3 16oz bottles of water each day. Befor you try to change the meds - try the easy stuff first.

        Good luck.
        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: dag NABBIT!!! i need help!?

          I have a question about the dehydration part. I cannot stand water but I drink loads of Diet Rite all day long. It's the only drink that has no caffeine, no sodium and no calories. Also no aspartane. So would this be the same as drinking water as far as keeping hydrated?

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          • #6
            Re: dag NABBIT!!! i need help!?

            I guess that kind of soda would work. I use salt free club soda (seltzer). I buy about eight cases at a time – except I’m now switching to one liter bottles. The darn cans keep exploding in my hot garage.

            I have kidney problems and have to stay away from all salt and salt substitutes, but I also am on two types of water pills so I have to watch it closely. If my frequent blood tests show I’m low on salt I take some. I also eat out a lot, and you really can’t avoid salt in those circumstances. One doctor told me to avoid all foods with Potassium, and another doctor put me on 20mg of Potassium pills a day. Strange world.

            Out here in the dessert, if you’re not drinking water, you’re becoming a prune – quickly. It can sneak up on you and knock you down fast. I sometimes wonder how visitors to Las Vegas don’t get into more water trouble – or maybe they do and it is just not reported.

            You are welcome to emulate me if you want. I’m a funnel. I pour liquids in the top, and - - - -
            Burt

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            • #7
              Re: dag NABBIT!!! i need help!?

              ANy fluid is good - Unlike Burton most of us NEED salt in our diet. Gadoraide is a great way to keep fluid in - I have now seen low carb gadoraide like drinks!
              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


              • #8
                Re: dag NABBIT!!! i need help!?

                Come on now people...

                We're all smart enough to know that there is NO substitute for water. Period! Just because it contains water, doesn't mean that it IS water. Soda, coffee, sports drinks, even fruit juices are not satisfactory substitutes for plain old drinking water!

                Does your diet-rite soda have phosphoric acid in it? I bet it does. This means that it is acidic... around 3.5 on the PH scale. Water is PH neutral and is used more efficiently by the body. Beverages containing phosphoric acid are also known to deplete calcium. A study by the Harvard Medical School showed that active women who drank soda had three times more broken bones than those that didn't, and a greater incidence of osteoporosis.

                Sports drinks are meant to quickly replenish electrolytes... but they are not properly balanced to serve as everyday drinking water. Any athlete knows that. And of course any beverage containing caffeine is known to dehydrate you more than the fluid in it is hydrating you... so it's a deficit. Even pure, natural, 100% fruit juice is unhealthy as a total substitute for water because the ratio of carbohydrates per fluid ounce are unbalanced.

                Drink your water people... 8 glasses a day minimum! 75% of the population out there is in a state of dehydration... us HCM'ers can't afford to be in that group. I've done a lot of reading on this subject, and you just wouldn't believe the long list of ailments we human beings suffer from, that would be alleviated if we just drank our water!

                P.S. Lisa's post about Gatorade was not intended to mean that you should drink nothing BUT Gatorade. This was not a rebuttal of her post. She's much much smarter than that, and drinks her water like a good girl

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

                Comment


                • #9
                  Re: dag NABBIT!!! i need help!?

                  Ok - while I must admit that Jim is correct that water is the best - If you can not hack it is best to drink something else.

                  Off to the barn for Becca's time with the horses!

                  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


                  • #10
                    Re: dag NABBIT!!! i need help!?

                    I have found that ice water quenches my thirst more than anything else. I do have a cup of decaf coffee in the morning, then mostly water during the day. Because of CHF I do have to watch my intake of fluids. When I have a choice, I choose water.
                    I'm a good little girl
                    Esther

                    Comment


                    • #11
                      Re: dag NABBIT!!! i need help!?

                      I have to admit that I have trouble dealing with straight water also. I do drink it and always have about six bottles in the car, with one in the cup holder for Shirley and another for me. But plain water will frequently give me hiccups. I do drink a ton of club soda, which is just water and carbon dioxide – which used to be used originally for indigestion.

                      When I’m out for a meal, I usually drink a lot of iced tea – mostly with no sugar added. There is a little caffeine in iced tea, but I drink so much liquid it is not a real problem for me. Surprisingly for the desert, a whole lot of people select iced tea as the drink of choice, even though the caffeine has dehydration qualities. Bottoms up.
                      Burt

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                      • #12
                        Re: dag NABBIT!!! i need help!?

                        well i just got back from vacation and found it hard to drink as much water as i was supposed to. i love water and usually drink it over soda and stuff, but i got sick of having no flavor!! so we got the powder drinks you add to water (strawberry lemonade mmm) and had those. i also drank more soda than i usually do but i seemed to be alright
                        hmmmmmmm
                        ~janelle*
                        \"The heart swells at the magnificance\"

                        1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

                        Comment


                        • #13
                          Re: dag NABBIT!!! i need help!?

                          Originally posted by Lisa Salberg
                          Unlike Burton most of us NEED salt in our diet.
                          Just how much salt is an HCMer supposed to take in? Do all HCMers need more salt? What's the purpose? Has this been addressed in another place and I missed it?

                          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


                          • #14
                            Re: dag NABBIT!!! i need help!?

                            soduim helps to increase your blood pressure - many of us with HCM have low b/p - sodium and good hydration can help to keep your B/P higher. I tend to run my b/p around 100/60 - it often drops to 90/50 and that range - I must make sure I have some salt and plenty of water to keep my b/p up. Low b/p can make you dizzy, tired and can cause many other symptoms.

                            be 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


                            • #15
                              Re: dag NABBIT!!! i need help!?

                              Hello again

                              Okay, so how much water should a HCM person be drinking? The average person should be drinking about 64 oz a day. My cardio doc has warned me to stay hydrated at all times which I do and stay away from too much caffeine. I quit the 3 bottles of Mountain Dew a day and between the Wylers Rasbery flavored powder w/water and the caffeine free diet coke I am up to 150 oz. I am just wondering what they rest of us do

                              Scott
                              Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!

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