Muscle Twitches caused by Coenzyme Q10 and Carnitine?

A forum to discuss personal experiences of Neuropathy associated with statin drug use.

Muscle Twitches caused by Coenzyme Q10 and Carnitine?

Postby BSGfan » Thu Feb 07, 2008 9:39 pm

Hello. I am a 50-ish male, taking such supplements as Acetyl-L-Carnitine in the 250 mg range and Co enzyme Q-10 in the 100-180 range daily for relief of statin induced cramping in my jaw muscles and right side of my face. I had been taking statins such as Mevacor, Lopid, and Zocor for nearly a decade. I also have a bit of carpel tunnel syndrome in both hands, with my left hand being markedly worse.

Over Christmas '07 I had consumed just three doses of Acetyl-L-Carnitine when I noticed I had developed a visible muscle twitch or spasm in the base of my right thumb. Thinking it might have been a reaction to the Carnitine, I suspended use and found the twitches gradually tapered off over the space of a week, leaving only a feeling of mild strain.

In January '08 I decided to experiment with a larger dosage of Co-enzyme Q-10, 170-220 mg daily. I found that after a few days of that I developed a slight visible twitch in my right index finger after a lengthy day of using a writing pad. Thinking it was not writer's cramp and might have been a reaction to an overdose of Q-10, I suspended use and the twitch vanished overnight, and the previously mentioned feeling of muscle strain in my right thumb proceeded to subside and disappear in a few additional days as well.

In the past couple weeks I have noticed a very small transient muscle twitch in the palm of my left hand, just above where my palm meets my wrist. Perhaps it is a new symptom of my carpal tunnel syndrome, or perhaps it is, again, a possible Q-10 reaction, although I have taken no Q-10 for the past four weeks.

My physician had no comment when I told him I had been supplementing with Q-10 in the 75-150 mg range. However, when I told him a month ago I had been supplementing in the 100-300 mg range daily he said that was perhaps an careless overdose and I needed to be more cautious with non FDA approved supplements.

The total amount of Q-10 I have consumed over the past three or four months has only been a total of perhaps fifty or sixty dosages, mostly in the 120-180 mg range. I would not take it for more than four days out of the week due to stomach discomfort, and would not resume again for another 3-5 days, by which time I found that most of statin induced discomfort relief I had produced had started to fade.

The total amount of Acetyl-L-Carnitine I consumed was one 250 mg capsule, followed I believe two days later by another 250 mg capsule, and another one 12 or 16 hours later.

It has been about a month or so since my last dosage of Q-10; I seem to have achieved some degree of stability with the relief of my discomfort, my statin symptoms have been quite mild and are now just beginning to worsen again, after being off the Q-10 for a month.

Do these reactions I have described sound like overdose symptoms? My impression from reading this forum is that the dosages I was taking were relatively small. My statin damage does seem comparatively mild from what I have read here.
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Postby cjbrooksjc » Thu Feb 07, 2008 11:16 pm

BSGfan: I've not heard of these reactions before; only stomach or bowel discomfort and lowering BP. Is it possible the supplements you take are somehow compromised? Maybe another supplier would solve the problem. Mine come from Jarrow (T-Gel Ubiquinol) and NSI (L-Carnitine). My dosages are much higher than the numbers you mention (approx 1 gram daily of each L-Carnitine and CoQ10). Another thought, and I don't know how you might confirm this, is perhaps these are positive signs of cellular repair? Sometimes getting well hurts almost as much as getting ill; anyway, it's just a thought.

Regards,

Brooks
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Postby BSGfan » Fri Feb 08, 2008 12:09 am

The Co-Enzyme Q-10 I was taking was obtained from Von's Select, the brand from the supermarket chain, and from GNC. Are those considered reliable brands?
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Postby SusieO » Fri Feb 08, 2008 8:09 am

BGSfan my wellness doctor told me that most supplements you buy at the grocery or health food stores have a lot of "fillers" in them. I had problems with this type of COQ10, too, but it was a headache and stomach upset.

What I am taking now that my wellness doctor ordered for me is Rx strength and can only be obtained by a doctor and it is supposed to be pure - no fillers. I ONLY take 50 mgs at lunch and again at dinner. I have noticed a lowering of my b/p, but no other negative side effects.
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Postby cjbrooksjc » Fri Feb 08, 2008 12:45 pm

BSGfan: As Susie said: the store brands of CoQ10 are often Chinese and full of 'fillers'. The purest form is made from KANEKA (Japanese) Ubiquinol. For the most reliable I have found, order from the following url:

*http://www.epic4health.com/ (remove the * before you link)

There you will find Q-Gel CoQ10; that's the best I've found. I don't know about store brand carnitine, but as I said - I order my carnitine from gonsi.com, and I am happy with the result. I order L-Carnitine fumerate in 300 cap bottles. There are a number of other offerings. If you have nerve problems you can order one of the Acetyl L-Carnitine (ALC) products.

I told you in an earlier post to get Jarrow T-Gel CoQ10; that was a mistake on my part. Use the URL above.

Brooks
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Postby adec » Sat Feb 09, 2008 2:43 am

CJ and Susie, you are likely being misled. Consumer labs tested 46 commonly found brands in the US and all were found to have the labelled amount of CoQ10. I posted the results on this forum a while ago.

http://www.spacedoc.net/board/viewtopic.php?t=796&highlight=

I have full access to the article, and can e-mail the results to anyone who requests it.

*http://www.consumerlab.com/results/CoQ10.asp
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Postby cjbrooksjc » Sat Feb 09, 2008 10:41 am

adec: Yes, I saw the list a while back, thanks. I don't know is if BSG is using one of the tested Q10 versions. I DO know the stuff TISHCON makes and epic4health sells is top quality, containing nothing but Kaneka Ubiquinol, and was specifically recommended by Dr. Langsjoen because he tested it for effectiveness in his lab and found it to have the highest bio-availability of any Q10 product yet. And, though the tested versions listed have met standards for quantity, I didn't see anything about bio-availability or what filler ingredients might be included. I do remember one that was labeled 'hypoalergenic'; that might be an option. Anyway, in the final analysis it's just a bird-in-hand thing for me. Thanks for the heads up. It does provide another, perhaps more cost-effective alternative.

Regards,

Brooks
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Postby Ray Holder » Sat Feb 09, 2008 4:39 pm

Personally, I find only Kaneka Q10 consistently reliable for fairly large daily needs, and I now get the Healthy Origins version from iHerb, which is only one third of the UK price of a kaneka european product. I have tried many brands, but only Kaneka works all the time, I soon get angina if my dosage is under par.

Ray
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Postby SusieO » Sat Feb 09, 2008 5:53 pm

Adec I don't think I am being misled because I tried some other COQ10 supplements and got sick from them. This one I have no problems with at all.

I take Xymogen CoQmax CF. "exclusive professional formulas - pharmaceutical grade, professional use only". "CoQ10 (ubiquinone) offers unparalleled absorption and bioavailability. "

Their website is *www.xymogen.com (remove the *)
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Postby cjbrooksjc » Sat Feb 09, 2008 7:41 pm

BSGfan: You're probably ready to put your foot in your PC screen, but, if you find a product that is 100% KANEKA CoQ10, I don't think you can go wrong, and that's what I would recommend. It should say KANEKA on the back label.

Best,

Brooks
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Postby adec » Sun Feb 10, 2008 3:21 am

CJ and Susie: I'm wondering if you both don't have undetectable liver weakness or damage. To make a crude analogy, it's like placing oil into a depleted and burnt out car engine. Even buckets of the finest oil in the world isn't going to completely revive that automobile. I'm not saying this ubiquinol is a bad product, per se. Just perhaps both your money would be more wisely spent in other places.

Ubiquinol itself is the reduced unoxided form of ubiquione. This state highly depends on the stability of the product itself, only then to be activated by oxidization in order to complete absorption. This seems counterproductive to me. I have many questons and only glossy marketing-speak for answers. The same result might be better achieved by simply coadministering with a powerful anti-oxidant, such as astaxanthin.

To answer BSGfan's question: I highly recommend trying milk thistle, probiotics, and digestive enzymes for starters -- especially for anyone still suffering from gastric intolerances, or basic malabsorption. Nature's Way Primadophilus Bifidus is identical to the prescription probiotic VSL#3. Now's Super Enzyme is also very effective and inexpensive. Make that liver and digestive system healthy. These are the supplements that greatly helped along my mom and aunt's complete recoveries from devastating sides. Neither one has needed to take a CoQ10 product in over six months, being a fairly substantive testimonial. You could also make common CoQ10 more bioavailable by coadministering with vitamin C, mixed-vitamin E, and a multi-B vitamin. Bioperine is also an affordable way to increase bioavailability.

*http://www.bioperine.com/crq10.htm

And my invitation remains open to ANYONE wanting a copy of the CoQ10 report. I would post it here if it weren't for copyright issues. You will find my e-mail address contained in my profile.
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Postby cjbrooksjc » Sun Feb 10, 2008 2:22 pm

adec: I think my liver is fine. I have had no problem with other products except Niacin. I simply prefer to follow my cardiologists advice. When a medical professional who has one of the few CoQ10 testing labs in the country tells me to get and use a particular product - that is what I will do. Also, in a physical scenario as complex as this side effect thing tends to get, I feel it is essential take one curative step at a time. Trying too many solutions at once can cloud the cause and/or the effect, and THAT is not anecdotal, I have learned it from personal experience during this continuing saga.

Brooks
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Postby adec » Sun Feb 10, 2008 5:02 pm

I understand CJ. I just remain unconvinced that, at today's rates, $20 worth of (stable) ubiquinol is any more effective than $20 of ubiquinone w/ mixed vitamin E at reducing lipid peroxidation. If ubiquionol (or even ubiquone) was some sort of panacea everyone would become well. Instead, I read about Dr. Graveline's recent ALS diagnosis, and many other forum participants who never seem to get better, with the same intolerances.

There's a much larger long-term underlying problem needing to be addressed. High-dose CoQ10 therapy to correct statin-induced damage, to me, is a wholly incomplete philosophy, lacking any true synergy. And the longer this cellular damage remains unchecked, it seems, the more looming and irreversible the problem becomes. And current lab tests, including plasma CK, are not sensitive or adequate enough markers to detect statin-related damage. I use the analogy of a silently ticking time-bomb. In hindsight, I learned this lesson anecdotally almost before it was too late.

Anyway, I just wanted to make a clarification about the purity and reliability of commonly found store-bought CoQ10, which according to Consumer Lab's all major brands tested fine. My mom and aunt both have tested with above normal CoQ10 levels using Sundown Q-Sorb brand.

And if BSGfan asked - today - what would be required to rectify the average case of statin poisoning, a more complete answer (to me) might be:

1. CoQ10
2. vitamin C
3. vitamin B complex
4. acetyl-L-carnitine
5. alpha-lipoic-acid
6. magnesium
7. ribose
8. pregnenolone (for forty years of age, and older)
9. milk thistle
10. probiotics
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Postby SusieO » Sun Feb 10, 2008 6:28 pm

adec; while you are being quite helpful I did not like the fact you suggested I may have liver damage. My doctor (not the one who put me on a statin) does extensive testing on me and I have never had any liver test come back anything but normal.

As far as the Sundowner brand of CoQ10 I can tell you I tried it 4 different times and each time I got very sick. I tried a few other brands and gave up until my wellness doctor gave me this pure form of CoQ10 and I have been on it for 3 months - not one side effect.

Each of us may have statin damage, yet no two people have EXACTLY the same problems and I doubt that if we all took the exact same supplements would we all heal the same. What has worked for me may or may not work for someone else since our genetic make up is totally different.

Also, from what I've read I gather you are not the one with statin damage it is two relatives, correct? You are certainly a wealth of information to them, but if you do not have statin damage yourself you really can't realize what we all have and are still going through. :)

I am very blessed with having a wonderful wellness doctor as well as a natural healer that works with me (after suffering for 3 long years). I am now able to walk over 5 miles a day as well as keep up with my every day life. However, any extra bit of Niacin throws me right back in to a state of weakness as well as other Rx drugs that have even the slightest bit of muscle weakness as a side effect. I find I take nothing for granted because I am never sure when trying something new if it will be ok for my body or will I go back to my weakened state. At least now when I do have a bad reaction it doesn't take long to get back on track and get my strength to return.
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Postby cjbrooksjc » Mon Feb 11, 2008 1:44 am

adec: As to your formulation, I agree with you, primarily. In my case; of course, I don't take the pregnenolone. As for the probiotics - I just eat a little Activia each morning. The rest I take, but I can't take much ALA without acid reflux. I also take a few other things I won't mention, but I got to this point over a matter of many months and your post seems to suggest someone take all this as an original and ongoing cocktail, and that's where we diverge. I would START with CoQ10 and L-Carnitine for a week or two, then the Magnesium and wait another two weeks, then add the Bvitamins but only B12, B6, and Folic acid, two more weeks and the D-ribose, etc. Some of this stuff gave me headaches, some gastric difficulties, some anxiety; I had to keep changing the amounts and/or the product to get to this point. I think it's different for everybody, no, maybe unpredictable is a better word. I feel anyone facing this challenge should take a scientific approach to recovery, and at least proceed carefully and take notes. And we still haven't discussed dosages... do you see what I mean? Maybe we should develop a general recipe for recovery (based on our collective experiences) with known problems included as checkpoints (BP, GERD, headache, pain).... and a time-line for step-by-step implementation... and recommended dosages, yadayada. But we must be sure anyone would know this is not medical advice, just lay suggestion. What do you think?

Brooks
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Postby BSGfan » Sun Feb 17, 2008 11:25 pm

Update:

I had begun supplementing with Coenzyme Q-10 in the 60-220 mg range for the relief of jaw and facial muscle discomfort induced by a Niacin-Lopid-Mevacor interaction; I had also noted transient muscle cramping in those same areas while on Lopid and Zocor for a number of years, but thought nothing of it.

After a few days of Q-10 supplementation at those high rates I noticed minor finger quivers in one hand. I suspended use and improved.

After plowing through about 30 Q-10 websites I finally found a reference at *www.cancer.org that Q-10 supplementation at high levels can lead to involuntary muscle movements. So it would appear that I now have confirmation that prolonged supplementation in the 180-220 mg range for me did constitute a bit of an overdose.

After more than a month off the Q-10 supplements I am finding that they did appear to have some positive effect; although a bit variable, my facial discomfort is now far less than it was six months ago, and I am experiencing longer periods of relief, days or weeks versus hours or days when I started. That's good.

On the negative side, the carpal tunnel syndrome in my left hand, my more damaged hand, is significantly worse than it was a month or two ago, with constant aches in the palm, a sensation of occasional muscle twitches at the base of the wrist, and an intermittent several times a day feeling of mild electric shocks in the palm and fingers. Now, I do have a bad habit of leaning back on this hand to support my head while reading in bed, or when using my cane, undobutedly leading to a bit of nerve compression, so it is possible my CTS difficulties may be unrelated to my Q-10 use. I intend to ask my doctor to perform additional nerve function tests. If the exams reveal my nerve function has actually improved I might regard my increased symptoms as a sign of healing triggered by the Q-10 use. Conversely, if the condition of my hand has worsened significantly I will be left wondering if the supplements had anything to do with it.
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Postby BSGfan » Thu Mar 13, 2008 12:34 am

Update: in the one month side my last posting here, the minor muscle twitches in my hands have persisted but have subsided considerably in intensity, but I have begun to notice similar mild twitches in my scalp, face, shoulders, feet, and buttocks. I do not know if this has any correlation with the supplements I was taking. It has been about two months since my last dosage of coenzyme Q-10. Assuming these fasciculations are the lingering result of the Q-10, how long can they be expected to last? As previously stated, I had only taken maybe sixty or so dosages of Q-10 in the past four to six months, never higher than 220 mg daily and most in the 100-180 mg range.

My statin induced jaw and facial discomfort is much reduced over what it was six months ago. Perhaps the Q-10 supplementation had some cumulative effect.[/code]
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Re: Muscle Twitches caused by Coenzyme Q10 and Carnitine?

Postby MickDesmond123456789 » Wed Sep 20, 2017 11:47 pm

I know this post is nearly 10 years later than the last post in 2008, however after taking 50mgs of cq10 for a week, I started to get muscle twitches.
Suspecting it was the cq10, I googled muscle twitches with it and here I am.
Given another side effect is insomnia, also something I experienced after my one 300mg dose, I'm thinking there must be a link between involuntary muscle twitching and cq10.
I think all the impurity posts are red herrings.
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Re: Muscle Twitches caused by Coenzyme Q10 and Carnitine?

Postby FranL » Fri Oct 12, 2018 1:50 pm

Hello Mick, I'm not sure how active Dr Graveline's forum is any more since his passing. If you need a support group and are on facebook, search Stopped Our Statins. There are over 2,000 members, more joining daily and lots of support.
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