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| Medications Nearly all of those with HCM are on some type of medical management. Share your thoughts, questions and concerns with others regarding medications here. |
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#1
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A number of people have posted recently asking about what dietary supplements and/or complementary meds they should be taking. This is an area I have a great interest in, and have done some research into. I thought it would be worth sharing with the community what I have found - and what I am taking, but it did get me thinking that there is a real lack of good quality advice out there. I am a strong believer in the power of integrative medicine - ie taking the best scientifically backed treatments from complementary medicine and combining them with an orthodox regime of medical diagnosis and treatment - I would never consider stopping a recognised orthodox treatment to try something "alternative".
However, not only is it hard to find information on the best approaches for a particular disease, it is really hard to find specialists who have a good understanding of both our disease state and the benefits (or potential risks) of complementary medicines. As you will see, I am taking a range of complementary medicines. I have discussed these fully with my cardiologist and naturopath, but obviously neither of them has a complete understanding across HCM and the use of complementary medicine - so I have taken quite a conservative approach. The following are the ideas I came across while looking into complementaries that may be relevant to HCM: 1. CoQ10 supplementation is definitely recommended. There is evidence to suggest that some beta blockers can reduce CoQ10 levels, and CoQ10 is well recognised as being important for normal heart muscle function. Some research also suggests that CoQ10 supplementation in HCM patients improves cardiac function and reverses septal thickening (http://iospress.metapress.com/content/w66833883147g366/). 2. Anti oxidants - there are planty of studies showing that a diet high in antioxidants reduces mortality from heart disease, and the HCM heart is particularly at risk of oxidative stress - the antioxidant vitamins A, C and E are often recommended. 3. I have seen claims that certain trace minerals - particularly copper, chromium and selenium could have an important role in management of HCM - and may delay / prevent the onset 4. I have also seen claims that L-carnitine may be beneficial. 5. Omega 3 (fish oil) is something that everyone should take - unless you can really say that you get 3 or more decent servings of oily cold water fish per week. I am taking 25mg of atenolol per day. I started on metoprolol, but was getting lots of arrythmias, and generally feeling quite weird. I moved onto atenolol 8 months ago, and started a regime of complementary medicines at about the same time. I have to say that I feel fantastic now - better than I have in years - but can't say whether it is the BB, the complementaries or the new job that I got at about the same time. I am currently taking 150mg of CoQ10 per day, 4x1g fish oil capsules, a multivitamin high in A, C and E and magnesium tablets. I am really interested in the research on minerals, and am considering taking a micro mineral supplement - and putting both of my kids (13 and 11 - both clear currently) onto it. I have not yet discussed with my cardiologist, and will not start until I have - I am aware that some minerals interact with the beta blocker and may have other affects on the heart muscle (eg potassium), so should be avoided. Personally I am not a great fan of herbal medicines as these are complex mixtures of actives that may not be equivalent from 1 brand or batch to another, and may have all sorts of unknown or unintended consequences. I am aware, however, that some herbal supplements that have a calming effect on the cardiovascular system may be useful in HCM - eg Ginkgo, Passiflora, hawthorn. I hope this information is useful and generates some good debate. I am no expert, and would always advise full discussion with your cardiologist before trying anything, but something is working for me.... Richard. |
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#2
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I have to agree with most of what you suggested. I was taking (pre-diagnosis) L-carnitine and found I was quite sensitive to it. I used to take it before going to the gym & found it made me feel horrible - so I switched to after my work-out, Still - felt horrible. So now I take a dosage with is much smaller & included in my multi-vitamin. My advice is that most of these are available in multi-vitamins and it may not be worth the additional expense for a separate supplement.
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Marc Diagnosed @ 48 Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy" Father to 3 boys 15, 19, 23 (all currently clear) AICD - Valentines Day '08 Myectomy @ Mayo for my 50th Birthday '08 Quietly going insane . . |
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#3
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Hi Richard and Everyone,
Richard, I am so glad you are getting such good results with your new combination. I hope it is okay I add to your thread...I would like to share with everyone some things I have learned about supplements. I used to work for a vitamin supplement company and read much of the book "Prescription for Nutritional Healing" as part of our on going training. Honestly, I am no expert; but there are a few things to be aware of. One of those are the fat-soluble vitamins A, D, E and K. Vitamin D is a more forgiving fat-soluble vitamin, however vitamin A and E are not. Please be careful with taking high amounts of vitamin A and E everyday. Supplement vitamin K should never be taken by anyone who is taking a blood thinner, it will throw off the levels in the blood since vitamin K is used to clot the blood. People who have a history of blood clots, TIAs or strokes should not take vitamin K in supplement form. Also, Ginko Biloba is not good for anyone with bleeding problems or is taking any blood thinners because it can cause more bleeding. http://altmedicine.about.com/cs/herb...k/a/Ginkgo.htm http://www.mayoclinic.com/health/gin...patient-ginkgo The B vitamins are good to take, I take a B complex and a little extra B-12. The Bs, as you know, are like vitamin C, they are water-soluble. But even too much of some B vitamins are not good either. I took 5,000 mcg of Biotin and got sick from it. Inositol and Biotin (both in the B family) help to regrow hair. When I started taking Verapamil, my hair became much thinner and did not grow well. I started taking a B Complex that included Inositol and Biotin, it took about 6 months and my hair has regrown. But the bad side of this is caffeine destroys many B vitamins. http://en.wikipedia.org/wiki/B_vitamins http://depression.about.com/cs/diet/a/vitamin.htm But please be careful not to take too much of any vitamin or mineral. Also be careful with taking amino acids, some can cause heart palpatations. **Unless prescribed by a doctor, Potassium supplements should not be taken by anyone. Natural food sources are best to get the right amounts of Potassium. http://www.mayoclinic.com/health/dru...ation/DR602373 People who have high blood pressure should be very careful when taking Ginseng (all types). It can either raise or lower blood pressure. http://www.mayoclinic.com/health/gin...SECTION=safety -- Please let your doctor know if you start taking a new supplement. My cardiologist wants to know everything I take. Here is a link to a website that gives a short description of many supplements; http://www.anyvitamins.com/vitamin-info.htm --- Thank you Richard for letting me post on your thread. And the link you provided is very interesting as few links ever mention HCM.
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46 yrs. old Diagnosed at 31. Cardiac Arrest 2003, RF Ablation in AZ, no positive result - First ICD 2003 - 2nd ICD 2006 Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon. My brother passed away suddenly at 34 yrs old from HCM. Last edited by Eileen2345; 10-02-2009 at 12:22 PM. |
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#4
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Thanks Eileen - of course you are welcome - I should have said that part of the purpose of my post was to hear others' experience and knowledge on the subject.
Not sure what you are saying the problem is with fat soluble vitamins generally - I am aware that there is research suggesting that high dose vitamin E carries some risks. Thanks. |
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