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  • alternative therapies

    [alternative therapies]

    Author: Elaine Stannard (---.tnt2.krk1.da.uu.net)

    Date: 10-13-02 14:18

    Hi - I just went to my cardiologist Friday- who is definitely not an HCM specialist - and he insisted - actually begged - that I start taking a betablocker - Toprol-XL - which I had refused before. He started me on 25mgs, then 50 next week and 100 the week after and then come back in three weeks. I notice I have less energy, even though I'm still just on the 25 mgs. I just don't like it..

    Does anyone have experience with this particular drug??

    Another question - several of my 5 daughters, 10 grandchildren and greatgrandchildren have "heart murnurs." Where can I get a good summary of the genetic information about HCM to give them so they will learn about HCM and be convinced-to get tested?

    Last question: I don't see anything about nutritional heart support in the HCMA message board. I personally am convinced that I am alive today (age 77) because of my long term nutritional regime with lots of organic foods, including much vegetables and fruit and good fats like olive oil. No low fat diet for me - but no bad fats either. I also take heart support supplements including vitamins and minerals. . If anyone is interested, I'll name them in a later message. Naturopathic doctors and a very few nutritionally oriented MDs and a few good nutritionists are your bet best to get a tailored individual regime. And, by the way, if you think your average cardiologists aren't up to date on HCM, just try them on nutrition! Probably even the HCM specialists aren't too great on nutrition...

    Many thanks to the folks who answered my first message about a week ago.

    Elaine

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    [Re: alternative therapies]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-13-02 14:40

    Dear Elaine,

    I've been on Toprol XL, I was on it for several years. Personally, I found that I like Corgard (nadolol) a little bit better (fewer yucky dreams). However, almost all beta-blockers are can make you tired. On the other side, they have been shown to save lives and are overall a very good medication for HCMers and others. You may be able to do other things to compensate for the tiredness.

    Please be aware that grapefruits and grapefruit juice will interact with the beta-blocker and should be avoided. There have been several discussions of diet and nutrition in the message board but not on the site. There is so much disagreement about what is and is not right regarding diet and nutrtion that it would be difficult if not impossible to support a particular position except "eat right and in moderation." I will talk to Lisa about it, but I do know that we don't put anything up on the site that we can't say is true. I agree that nutrition and diet are very, very important, too. Hopefully this is something we can add someday soon.

    As for info for family, I would encourage them to read this web site's overview on HCM which is a very good introduction. Also, if you become a member, you get a copy of "Hypertrophic Cardiomyopathy: A Guide for Patients, Their Families and Interested Physicians" which is the best print resource for "beginners." (full disclosure: Lisa wrote it). You can also buy copies for $25 each if you call the office.

    Personally, I know that whatever I eat has a profound impact on how I feel. eg Cheese: I love it more than anything but it is basically poison to my system.

    take care,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: alternative therapies]

    Author: Robert Hartwell (---.focal2.interaccess.com)

    Date: 10-13-02 16:55

    I have found that if I eat too large of a meal (any type of foods) this agravates my HOCM and causes me a bit of SOB even at rest. I have been following "the Zone" diet as best I can. The diet help me eat more frequently with less quantity. I have felt better for it (I too love cheese!).

    I have been on Nadolol and Verapimil all of my HOCM life. Sorry I can't be of much help there.

    Bob

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    [Re: alternative therapies]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-13-02 18:10

    Dear Robert

    This is a common problem with HCMers --heavy meals can bring on palpitations from the extra stress a big meal puts on the whole system. Most people find that eating smaller meals more often makes them feel better.

    Also, super cold things are a shock to the system and should be avoided too. I don't drink anything with ice in it, not even my water. I drink it room temp. I know, some people think this is gross, but that is what I do.

    S

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    [Re: alternative therapies]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-13-02 20:36

    Well lets see...

    1. most people are a little tired when begining beta-blockers let your body adjust... Your heart needs to relax and these meds will help it do just that.

    2. If your family has murmurs and you have HCM they should all be evaluated again by a doctor and make sure they are clear when explaining family history. I can not tell you how many people I speak to that have similar situations to yours and the family members end up with diagnosis of HCM after they are clear with the doc about family history.

    3.While I can agree tha food products are very important and a good diet will help you feel better, until I have some medical advise on how various foods react with HCM and meds I can not offer advise here at the HCMA, I feel doing so may be damaging. If and when I can varify information I will be happy to share it.

    Best to all,

    Lisa

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    [Re: alternative therapies]

    Author: Amanda (---.dsl.dytnoh.ameritech.net)

    Date: 10-13-02 21:43

    i am also on toprol xl but my doctor started me on 200 mgs a day 100 in the morning and 100 at night but lowered the night dosage to 50 mg. i am very tired with this medicine but it could also be my pregnancy who knows. but the medicine works really well with me.

    sincerely,

    amanda

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: alternative therapies]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 10-13-02 23:07

    Sarah, can you elaborate on what cheese does to you? I love it and since I am on low sodium I try to save all my recommended daily allowance to allow for daily consumption. Maybe some of my complaints are due to my "absolutely must have my cheese each day."

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: alternative therapies]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-13-02 23:14

    Dear Amelia,

    Well, on top of being lactose intolerant, even if I take the little pills for it, I just feel lethargic and yucky after a lot of cheese.

    S

    But I still have some pizza once in a while.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: alternative therapies]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 10-14-02 09:17

    The first beta-blocker I was on was toporal and I was so exhausted I could barely function as a person. I slept most of the day and was just not a happy person. My docs then switched me to a calcium-channel blocker and that was much better.

    Mary

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: alternative therapies]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 10-14-02 11:26

    Dear Elaine,

    I, also, am on Toprol--again. I did not like the side effects of fatigue, dizziness, and shortness of breath. At 200 mg daily I had strange visual and nasopharyngeal effects. But after withdrawing from it totally & trying two other meds (verapamil, then enalapril) it became clear that only the beta-blockers are effective in relieving my angina. Atenelol gave me real bad dreams & leg/foot pains, so I'm now back on Toprol at 50 mg daily. The fatigue isn't as bad this time around & at this dosage; I do believe I am accommodating to it as Lisa suggested. I'm also taking it at bedtime which I think helps--it peaks while I'm asleep. And I'm still hoping that--as the diagnostic process with the specialist goes further--I may yet be able to come off it.

    I would say, though, that your cardiologist is also not a geriatrician (a specialist in working with people age 65 or older). All drugs need to be prescribed in lower dosages to older people and increases in dosage need to be done more slowly and carefully than with young or middle-aged adults. The older body does not respond to, metabolize, or excrete drugs the same. If I were you I would really, really question increases from 25 mg to 50 mg to 100 mg daily in weekly steps and without intervening medical appointments during which your need for and response to the drug is evaluated. Heck, even when my cardiologist moved me from 50 mg to 100 mg to 150 mg to 200 mg daily he had me (age 57) stay at one dosage for months before increasing it to the next dosage!

    You don't tell us what symptoms or cardiac pathology the cardiologist is hoping the Toprol will control or why he might think speed was so important. I don't suppose you live somewhere near to an HCM specialist? Have you called the HCMA office to find out? The phone number is on this Web site. Failing getting in to see a specialist, how about asking your current cardiologist's office for an appointment to go over your questions & your response to Toprol 25 mg before you increase the dosage?

    It sounds like you've taken good care of yourself for 77 years. Keep it up! And good luck,

    Pat
    NOTE: This is a post from the previous forum message board.

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