I was diagnosed with MVP last fall... I have had an abnormally high heart rate since I was a teen, elevated too quickly with exercise... have alway had a mild exercise intolerance, which didn't mean I didn't exercise it just meant no long distance running or short sprints... I lost about 40ish pounds before I started nursing school about 3 years ago, well prior to my diagnosis I had gained about 10 pounds of that back..... now approximately 8 months later I have packed on another 20 or so pounds. I am on a beta-blocker that keeps my resting heart rate in the low 60's and with exercise it isn't getting nearly where it should be. I am having a very difficult time losing the weight I have gained and realize that alot of it has to do with the fact, I am not exercising as much but I am really trying to get this weight off, I can not tolerate anything like metabolife and I have to eat or suffer the rath of horrible hypoglycemia. Does anyone have any suggestions? I hate bothering my MD with this... It just seems like there has to be something that I am overlooking to help get this extra 30 pounds I am carrying around off.

Thanks,
Amy

Amy, I have this condition too but my doctor did not recommend anything for me. She did say it could be the reason I get tired a lot, though. As far as your weight is concerned, I would not go anywhere near anything like Metabolife because it even tells you on the bottle not to use if you have any heart conditions (I believe). Please do not take any of these supplements, especially anything with ma huang or ephedra/ephedrine (which some forms of Metabolife and the like still have). What I would suggest is the normal route of drinking 8 glasses of water a day plus balanced meals. It sounds like you might do well with 4 well-balanced mini meals and a snack (like fruit and/or yogurt). If you are under a doctor's care which I assumed you were, I would ask about a weight loss plan. There was a really good book at Border's I saw once on the subject (MVP) and I know a low fat diet was recommended along with cutting out sweets (which is my downfall!). I'm not sure of the name of this book but it did have MVP in the title, I believe. Also, I do take the supplement COQ10 which I asked about and was given permission to take. Since you are on beta-blockers, do not take any supplements before you ask your doctor (I would even ask about vitamins, too). I hope this helps. Also I would think walking would be a good exercise for you and resistance training but ask your doctor before doing any exercise. I exercise and do well except at the end of the day, I'm very tired so I exercise in the a.m. and if I can manage, I try to do stretching or a little yoga or pilates at night. Good luck, and let us know how you are doing.

Thank you for responding... I am not taking any supplements except for a multi-vitamin, calcium and a B Complex. My MD knows about those. When I finally sought medical attention for my heart palpitations, I had been taking a supplement not for the weight loss effect but for the energy it gave me and the amount of things that was going on in my life. I am still very active as far as what is going on my current agenda. I am just sick of not being able to drop my weight, I was wondering if someone may have some insight.

What are you taking the COQ10 for? Just curious...

Thanks,
Amy

Sorry I forgot to check this site after I responded. Actually, I read somewhere that it helps with the heart and circulation although I'm not sure how. I noticed when I take it I feel a little more energetic which is unusual because supplements rarely seem to have any effect on me. So I told the doctor I took this and she said it was o.k., although maybe I should not have taken it without consulting her first. It is quite expensive too, so that is something to consider.

I agree with everything Musicgal said

I have MVP and was diagnosed in 1988. I have a lot of little things wrong with my heart, which add up to a big inconvenience, lol. MVP isn't fun. The good thing, though, is that it can get better over time. It doesn't go away, but the symptoms often become less noticable. My cardiologist said that with men, mvp gets worse with time, but with women, it usually gets better. I've noticed that for myself. When this first started, I could not move. I couldn't lay down and had to sleep sitting up for the first year, gradually moving my way down over the next year. If I dropped anything, I couldn't lean down to pick it up. It took quite a few years to recover from that first episode.

I didn't have any symptoms or any reason to think I had something wrong with my heart. Then one day, a couple of weeks after my hysterectomy, everything turned black, I saw stars, and it felt like my heart was pounding so hard it might explode. I kept an arrhythmia 90% of the time for the next few years. My body felt numb and I was dizzy most of the time. All I could do was sit and not move. As a single parent with a small child, I lived in fear of what might go wrong. Between the inability to move and the beta blockers, I gained an average of 20 pounds a year for several years

The beta blockers will affect your weight. They slow down the metabolism, so you burn fewer calories than you should. This makes losing weight more difficult for us, though not impossible. Expect slow loss. Losing a half a pound a week is a huge victory for many of us. I don't mean that to sound discouraging, though. Slow weight loss in general is better for everyone, since it is usually permanent and safe.

What works best for me is exercise, in the form of walking. It's something you can do gradually, and will strenghen your heart over time. Since starting a walking routine a few years ago, I've not had one angina attack. It will help boost the metabolism not only during your exercise, but for several hours afterwards.

I take CoQ-10 too! I've not been taking it long, just a few months. I learned about it on an MVP forum and did a little research on it. I've found mixed information, though. Some experts do believe it is vital to heart health, but the American Heart Association says it's too early to tell and they don't currently recommend it. It doesn't appear to be harmful, though, and should be safe to take. I take 100mg daily. I recently learned that many people that stop taking it find their heart disease symptoms return, and sometimes are worse. Therefore, if you are going to go this route, it may be a lifelong committment.

Magnesium seems to be a lifesaver for many MVP patients. There is a wonderful MVP support forum at http://www.mvpsupport.com/ Do a search for magnesium and you'll find a lot of information.

Sugar and simple carbs seem to be triggers for some people, according to that website.

Oh, I also take fish oil or flaxseed oil capsules every day. Omega oils are supposed to be important to heart health as well. I take 3 grams daily.

Btw, here is the Berkeley Wellness info on CoQ-10

Coenzyme Q-10


Claims, Benefits: Prevents and treats heart disease; cure-all.

Bottom Line: This interesting antioxidant may be effective against heart failure. Talk to your cardiologist about it if you have heart disease. It is expensive, and its benefits for healthy people remain unproven.

Full article, Wellness Letter, April 2000:

Looking again at coenzyme Q-10

Coenzyme Q-10 (CoQ-10), which we last looked at in 1996, is one of the most popular dietary supplements—not just in this country, but around the world, especially in Japan. It's claimed that CoQ-10 prevents and/or combats many disorders, including heart disease, cancer, AIDS, lung disease, hypertension, gum disease, obesity, impaired immunity, chronic fatigue syndrome, asthma, Alzheimer's, allergies, and aging itself. In recent years much research on CoQ-10 has confirmed that it is indeed a very important substance. But even so, the clinical research is still in its infancy—and thus the marketing claims remain overblown.

CoQ-10 is necessary for generating energy in all human cells—as well as in all living organisms. First isolated in 1957, it was named ubiquinone because it belongs to a class of compounds called quinones, and because it's ubiquitous. It also acts as a powerful antioxidant, meaning that it helps prevent the cellular damage caused by free radicals in the body. CoQ-10 is manufactured by the liver; it is also found in many foods, but is most concentrated in meat and fish. CoQ-10 is one of many substances (including DHEA and melatonin) in the body that tend to decline as people age and/or develop certain diseases (such as various cardiac conditions and Parkinson's). But that doesn't mean that the lower levels of CoQ-10 cause aging or disease, or that supplemental CoQ-10 will combat or reverse the effects of aging or disease.

What the studies show

Interest in CoQ-10 began after early research in Texas showed that CoQ-10 supplements can help treat otherwise unresponsive congestive heart failure and certain other heart problems. Studies since then have had inconsistent results. Further clinical trials are underway.

An international conference on CoQ-10, held in 1998 in Boston but only recently published, included three dozen studies and reports. Among the findings: CoQ-10 may work even better than vitamin E against two kinds of free radicals. But, unfortunately, it can also "auto-oxidize"—that is, it can become a free radical itself under some circumstances. Vitamin E can prevent this, however. Indeed, studies suggested that these two substances work synergistically, as do many other antioxidants—such as vitamins C and E, beta carotene, and alpha-lipoic acid.

Another study found that the more CoQ-10 there is in LDL ("bad") cholesterol, the less susceptible it is to oxidation. It's theorized that the oxidation of LDL increases plaque development in artery walls. Vitamin E also helps reduce the oxidation of LDL, thus reducing the risk of heart attack. Other researchers at the conference reported that the cholesterol-lowering drugs known as "statins" (which include lovastatin and the dietary supplement Cholestin) reduce the body's synthesis of CoQ-10, but the health effects of this are unknown.



Most of these studies and presentations were highly theoretical and/or preliminary, merely suggesting potential benefits of CoQ-10 supplements.

Keep in mind: There's still no solid clinical evidence that CoQ-10 supplements benefit healthy people. So why not take them just to be safe? There doesn't seem to be any danger, but no one knows what the long-term effects are. CoQ-10 costs about $15 to $30 a month for typical doses. The large doses of high-potency capsules some advocates are recommending for heart patients cost as much as $6 a day.

If you have heart disease, talk to your cardiologist about CoQ-10. If you're taking CoQ-10 on your own, make sure your doctor knows. Make sure you also take vitamins E and C. And don't think that CoQ-10 can take the place of proven, reliable treatments.

UC Berkeley Wellness Letter, April 2000

Wow, Suzanne, thank you so much for all that info. You've been through a lot. I hope Amy reads what you wrote as well as others with MVP. The weight loss issue is a tough one. The only plan where I was able to lose more than 15 lbs. with and keep it off was Weight Watchers (when it was a food exchange plan) about 13 yrs. ago (until my pregnancies but then I went back to it being a Lifetimer and all...though I am now about 8 lbs. above goal). It took me a year to lose about 17 lbs. while others at WW could lose that in a couple to a few months or so. Thanks for all your information. I guess with MVP we all have to face the fact that weight loss will take longer for us. Thanks, too, for all your research on COQ10. You're the best!

Thank you guys so much for the info... I had a feeling that the medication, which I have been on for about 6 months was going to have an affect on the weight loss. I have never gained quite as rapidly as I have over the past few months primarily due to lack of exercise because of school at the same time. I get dizzy a great deal, I did before I was diagnosed but seem to much more since taking the beta blocker. I didn't have any blood pressure problems prior to starting the meds so now it runs about 95/48 where before it ran about 110/60 the heart rate is another major change dropping from between 95 and 110 to between 50 and 65. I can get the HR up to about 110 now with exhertion, I don't tire as easily beleive it or not. I am not a symptomatic unless I over do it with caffiene and carbs do seem to set off some palpitations I have been doing some low carbs stuff the past week or so and have not been nearly as hungry or had nearly as many cravings. I am not a big protien eater so Atkins is not an option...

Well I am rambling, thanks again, I will keep you up to date with my progress.

Amy