Trying CoQ10 again

[L'engle]

Hi there,

A few years back when I was functioning around a level 6ish, I tried Coq10 for heavy leg/low circulation, and found it helped my fatigue somewhat. I tried it again last year when I was functioning around 1-3 and it gave me a headache. Now I'm at about a 4, I'd guess. I'm going to try taking just 15mg again and see if I get a headache or if my baseline improvement is enough to get the Coq10 tolerated again. I'll let folks know what happens in case any are curious. BTW I only take Enzymatic Therapy's CoQ10, any other brands have not really worked and have given me a headache.

 

[sensing progress]

will be interested to hear how the trial works this time, keep us posted. it seems strange that it would cause a headache. do you think it's from the CoQ10 itself? perhaps it's from one of the other ingredients, maybe a filler?

 

[heapsreal]

im trying q10 again at 150mg(now brand) a day, its been only a couple of weeks but cant really tell if its doing anything. i tried this a few years ago with no noticeable effect but used a lower dose. Maybe theres no noticeable effects as improvement is slowwhich makes it hard to know if its working. Im going to try and keep taking it for a good 6 months. Theres plenty of research that says its good for other things as well like blood pressure, cholesterol, energy and as an antioxidant in the mitochondria.

im interested also in other peoples experience with q 10.

cheers!!!!

 

[Sallysblooms]

I take 120mgs every day. It has made a huge difference in how my heart and chest feel with my POTS.

 

[glenp]

200 mg here

I am taking 200 mg. I cannit say that I can tell it helps but take it as it is recommended by many experts

glen

 

[sphynx on roundabouts]

Ubiquinol here!

Hi L'engle,
Sorry to hear about the difficulty with the coq10 adn I hope you can find a better way with no headaches soon. Because Dr Klimas and Dr Myhill are very keen for patients to try coq10 I did so on a number of separate occasions. It started out ok and went quickly downhill for me because it made the squeezing in my heart worse and so I had to stop. I heard Dr Myhill talk about how d-ribose is so beneficial for ME/CFS but that it makes some people worse when they have a fermenting gut instead of a digesting gut. I was wondering if there might be a similar problem with the coq10.

I stumbled across Ubiquinol recently and learned that it is much more easily utilized by the body as it is readily available as opposed having to be converted as is the case with coq10, I believe. Anyway, I thought I'd try it out starting at 50mg per day and am happy to say that it gave me absolutely no problems so far (only 3 weeks in). I gradually increased to 150mg per day and still do not feel any adverse side effects. My heart has been my most devastating symptom and is very weak but since starting the ubiquinol it feels a small bit stronger.

Dr Cheney advises against coq10 and finds it makes patients feel worse but from my limited experience I can say that I feel a little better in the heart taking the ubiquinol.

 

[L'engle]

Thanks folks! I've heard mixed things about CoQ10, particularly about POTS and blood vessel dilation/constriction. The headache I got from it before was definitely the blood vessels in my head either constricting/dilating, I can't remember which, think it's dilating in the case of coQ10. It definitely gives me a bit of energy right off from the first does, so maybe it's the brand. (Enzymatic Therapy) as I've never had much luck from any others. I can feel that it pushes more blood and oxygen into my brain, which helps a bit with cognition. I actually felt somewhat good for a few hours yesterday (yes, monumental, isn't it, a few hours feeling good!!!) and was able to do some work (less than 4 hours). However, I took it too late in the day (mid-afternoon) and it kept me from sleeping properly until the second half of the night. Woke up feeling like a boiled shoe. So I'm going to not take any today, but try taking a small amount much earlier tomorrow. IT doens't seem to have given me a headache yet, just my usual under-slept feeling.

The ingredients are listed on this page:

http://www.iherb.com/Enzymatic-Ther...le-Nut-Flavored-30-Chewable-Tablets/2099?at=0

I do tend to notice a bit of benefit at quite a small does. I take almost no supplements and no medications, and tend to be affected by small doses.

We'll see how it goes. I may yet get... The CoQ10Headache. I think it may have dulled The POTS Headache yesterday.

 

[*GG*]

I am taking 200 mg. I cannit say that I can tell it helps but take it as it is recommended by many experts

glen

Yeah, I used to take it. I wasn't sure if it was of the best quality. So I asked my Dr at the time if we could check my blood level and he said yes. Based upon that he said I did not need to take it.

FYI

 

[L'engle]

Took it again yesterday, (15mg) and didn't have trouble sleeping last night. I think it may have added something to my well-being/cognitive functioning, but took a long while to take effect, and I don't know how much is the CoQ10, and how much is the electrolytes. Still, I got some work done in the later part of the day, which is always miraculous in my books.

 

[Sallysblooms]

The best quality is important like with most supplements. Take it early in the day. I take it in divided doses, morning and at about 1pm. I have a schedule for all of my supplements, three times a day. You need it for the ATP, energy. Heart, Liver and Kidneys need it for sure. I was really needing it, I benifit a lot.

 

[bee33]

I've been taking 30 mg a day for about two months on the advice of my CFS doctor. I haven't noticed any difference, good or bad.

 

[heapsreal]

hi bee, thats quite a low dose, most take between 100-200mg a day.

 

[Tony]

I first tried CoQ10 at 100mg per day for several months and noticed no difference. Later I tried 200mg per day and really noticed a difference in stamina. I was very impressed. Unfortunately it only lasted for 2/3 weeks, slowly losing effectiveness until no noticeable effect. I continued 200mg for many more months anyway but eventually gave it away...

I don't have heart problems that I know of, but a milder form of O.I. which means I can stand for 1/2 hour or so or walk around for that long a couple of times per week. A 15 minute or so slow walk daily is my baseline exercise.

 

[Sallysblooms]

I forgot to mention, I take 120mg. I know it has helped me, not sure if you have to feel it or not to be good for the heart, liver etc.

 

[caledonia]

I take 100mg a day and it helps significantly (80%?) with my brain fog. I can tell within a day or two if I run out. I self muscle tested it and I should be able to take as much as 150mg per day, but I haven't actually tried that yet.

I haven't noticed any effect on energy. I get mine from Sam's Club.

 

[bee33]

hi bee, thats quite a low dose, most take between 100-200mg a day.

The doctor said to take 30 mg of Coq10 and 5 mg of NADH daily, and I don't remember how many mg of OH Tryptophan at night. I haven't taken the tryptophan because I read it increases serotonin, and SSRI antidepressants are very bad for me (make me depressed, sobbing) so I am wary. I have noticed no difference with the two enzymes. I suppose I should go back and ask for more or different recommendations, but this is a CFS specialist who doesn't take my insurance, so seeing her is $100 a pop.

I also asked her if she recommends a gluten free and dairy free diet, and she said to try it fro two months. That seems to help a bit. The only thing I've noticed is that whenever I cheat and eat wheat I feel worse.

 

[sphynx on roundabouts]

I take 100mg a day... I self muscle tested it and I should be able to take as much as 150mg per day

Hi Caledonia,
Sorry if this is a stupid quiestion but how do you seld muscle test? Is it to do with putting some of the substance in your hand and observing the changes in the strength of the arm?

 

[Tony]

I also asked her if she recommends a gluten free and dairy free diet, and she said to try it fro two months. That seems to help a bit. The only thing I've noticed is that whenever I cheat and eat wheat I feel worse.

Hi bee, the diet is worth a shot. If you feel better off wheat you could be a candidate for fructose malabsorption which is pretty common in ME/CFS. This is a recommended approach by dietitians and gastroenterologists here. It's not necessarily always about gluten and worth doing the breath test. Some info here.
The second reference is a very good study by Barrett and Gibson, "Clinical ramifications of malabsorption of fructose and other short-chain carbohydrates. 2007"

 

[L'engle]

I've been forgetting to take it, since it seemed to have fairly minor benefits. I'll keep taking them gradually though. the minor benefit is something.