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momof5
06-08-2009, 01:22 PM
Hi Everyone,

During some bouts with afib last week, I had some time to do some research. Has anyone had any improvement with CoQ10? I found this study, it is a small group with no control but it looks promising... http://www.ncbi.nlm.nih.gov/pubmed/9266516

I took only 50 mg this morning (ok'd by my local cardio-will discuss w/ Dr. Wang next wed) and my chest feels more relaxed.

Any thoughts?

Thanks,
Pauline

THW
06-08-2009, 02:40 PM
Pauline,
I believe there have been other threads about CoQ10, so you may want to do a search. My personal opinion is that I would be careful with anything that is not FDA approved for a specific condition (and even things that are). But not only was there not a control group in that study, but it also had a very small N, so I would be careful in interpreting those results.
Please keep us updated and let us know what you learn.
Theresa

Cynaburst
06-08-2009, 03:11 PM
I take COQ10. I have taken it for a long time. It is hard to know if it really does anything, but I know that there are some doctors that strongly recommend it.

Lisa Salberg
06-09-2009, 09:32 AM
The recommended dose is rather high - I believe 200mg per day and it is not a short acting effect - those who have reported improvements have taken it daily for months. I tried it myself a few years back I felt no change and frankly thought it too pricey to keep taking at the recommended dose. Some people claim it improves symptoms other say no - there is no data that co-Q10 is harmful - but as with any medication talk to your doctor first before starting anything new.
Lisa

RRKamm
06-09-2009, 06:23 PM
I tried it, too, for abou t6 months. I didn't notice any changes - positive or negative. Like Lisa said, a little pricey for no noticable improvement.

My two cents worth.

Bob
:big_bowl::big_bowl:

aDoug40s
06-10-2009, 01:56 AM
I just started taking it this week. Had I known that taking statins blocks the bodies ablility to make it I would have started taking it as soon as my family Doctor put me on Crestor.

I figure if it might help save my life then I will take it.

I also read the info on a several web-sites like: http://www.yourhealthbase.com/coenzyme_Q10.htm
and a book about Genetics and the foods we eat.

The book said that a lack of it might have caused my heart problems to appear and to worsen. It suggested that a person with heart problems take 400 mg of it a day and that a normal person on statins take 100 mg.

The book also suggested taking the following: Alpha lipoic acid, carnitine, ribose, creatine and a vitamin B complex


I did a search on this site for it but no results

ben's mom
06-10-2009, 08:30 PM
Thanks for that link Doug!

Marcie
06-10-2009, 10:02 PM
I started taking 300 mg per day about 4 months ago and it has made a world of difference in the way I feel. More energy and more stamina than I have had in quite some time. I also feel a great deal of fatigue after about 3 days of not taking it. I wish I had started on it earlier. Dr. Ommen told me several years ago I could try it if I wanted to, that some people seem to benefit from it, but because of the price I just didn't. Then, I believe it was Gordon, that said here on the board that he was getting good results from it so I decided to try it. So glad I did. I noticed a difference within 3 days. I believe it also helps me not have palpitations as often as I did.

This is just my personal experience - I'm not saying it will work for everyone.

Marcie
Septal Myectomy 8-4-2001,
Dr. Ommen and Dr. Dearani at the Mayo

aDoug40s
09-08-2009, 01:37 AM
Rats - It doesn't seem to be working for me anymore.
I did find that I was getting fewer PVCs but now it doesn't seem to be helping anymore.

I'm getting all kinds of PVCs. It really stinks and makes it very hard to get to sleep and to get a good nights rest.

It varies so much. When it is really bad for me I get a bad beat then a couple of good ones then another bad one. Then 3 or 4 good ones and another bad one and so on.

I wish there was something that I could do to stop them. I know what they look like on the heart monitor as I could see them when I was hooked up in the ICU last year.

I'm currently taking 300mg per day. Maybe I should try increasing it to 400mg or 450mg.

EmilysDad
09-08-2009, 10:05 AM
Emily felt that CoQ10 helped during heart failure, giving her more energy. However, her HCM was caused by mitochondrial defects, not the more common sarcomere mutations. Since CoQ10 works in mitochondrial metabolism it is no surprise it works for her. Even now, post-transplant, she feels it really gives her a boost.

If you do use it, be aware that since it is not a regulated pharmaceutical drug the activity of different brands is different. We have found the "Ubiquionone" gel caps seem very effective. Unfortunately, it is expensive, but they offer a mail order rate that brings it down to about a dollar a day.

aDoug40s
09-09-2009, 01:27 AM
CoEnzyme Q10 is also known as Ubiquinone or Ubidecarenone.

Is there one brand that is known to be better than another?

Emily's Dad - you didn't say which brand Emily is taking or where you get it from.

I've been using HealthBalance 150mg bought at Costco twice a day.

EmilysMom
09-09-2009, 09:36 AM
I will reply for Emily's Dad, as he does not have this info with him.

She is using "Active-Q" (ubiquinol gel caps) we purchased from a company called Epic (800-866-0978 or www.epic4health.com)
as recommended by the mitochondrial specialist we see. As Bob said, we have been told, and Emily reports that the formulation and strength varies a lot. This form seems to be effective for her.