[alternative therapies?]

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

Date: 10-07-02 17:02

Hi.

I'm 77 years old and was diagnosed with HCM about 6 years ago. I have a great cardiologist with an open mind and a sense of humor, fortunately, because I have not taken any of the medicines he has recommended. I have been taking a number of nutritional supplements to stengthen the heart - actually have been a "healthfooder"on a good diet for a long long time and want to avoid medications. But I have probably had HCM for a long time with gradually increasing symptoms and since my father and mother both died from heart failure and my brother (56) from a heart attack, it may run in the family.

When my Cardiologist suggested I try verapamil, I did for a week and got very constipated so I looked it up on the internet and found that it does that - so that's when I decided to not to take it - so he suggested a beta blocker and when I looked that up it said the same thing - so I said no, I'll just go with my supplements and diet. Then he suggested a 1/4 aspirin a day and when I did that for a week, I started getting nosebleeds - so that was out too. Then he suggested a cholesterol lowering drug although my cholesterol was within the normal range (altho at the higher end), but I really don't think that's a good idea either, so am not taking that. Up until recently I have been doing fairly well, but recently am having more fatigue and inability to walk up very many stairs and when I had an echogram a few weeks ago, the technician said I couldn't do the stress part of the test because my heart was too weak.. oh dear..

So, then I heard about septal ablation - and am thinking, if the symptoms get worse, maybe I should consider it. Apparently it has been done quite a bit in Europe and some in Canada but is not done much in the US - a big project is going on in Florida at UF.

I am going to see my Cardiologist this Friday and am wondering what words of wisdom any of you folks have for me???? Thanks so much for reading all this.

Elaine

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[Re: alternative therapies?]

Author: Priscilla (---.proxy.aol.com)

Date: 10-07-02 18:52

Hi Elaine, I had the Alochol Ablatation done in October 2001 at Georgetown University in Washington DC. It helped me a lot. If you would like to know about this e-mail me.Good luck

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[Re: alternative therapies?]

Author: chuck B (---.56.113.201.Dial1.Baltimore1.Level3.net)

Date: 10-07-02 21:51

The naturopathic books/ doctors mostly say the same thing about supplements for heart desease, use El carnatine, hawthorne, and co q 10 (even recommended by the Mayo clinic)and of course a heart healthy diet. First check with your doctor because these can react with some heart meds.

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[Re: alternative therapies?]

Author: Amy Williams (---.proxy.aol.com)

Date: 10-08-02 10:24

Hi Elaine,

Alcohol ablation has been successful in relieving symptoms in people with Hypertrophic Obstructive cardiomyopathy. If your HCM is non obstrutive then it is not an option.

Have you spoken to your doctor about trying a different med? Maybe you can find one that you can tolerate. My medicine has improved my quality of life greatly.

Good Luck

Amy

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[Re: alternative therapies?]

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

Date: 10-09-02 00:32

Dear Elaine,

Please call the HCMA at 973-983-7429 to get the names of specialists in your area or somewhere that would be convenient for you to visit. Ablations are not for everyone and you need to be seen by someone who knows what a good candidate is and how to do one properly. The majority of local cardiologists have not done very many (or not many compared to the big heart centers) and do not have the same kind of success rates that the centers do.

You should have your potassium, magnesium and calcium levels checked as low levels can promote symptoms.

HCM is genetic and I highly recommend reading the rest of this web site for all the lowdown on it.

There is no known treatment for reducing hypertrophy. Surgery and ablation are the only procedures available to reduce the septal wall thickness. However, you may have HCM and not have any obstruction at all. If this is the case, then you are not a candidate for either.

If you see a specialist, you can be sure that you are evaluated for any risk of sudden death, evaluated for surgery or ablation and if you need to consider capitulating and take some medication. You may want to try a baby aspirin, by the way, see if you can tolerate that.

take care,

Sarah