Headaches from coQ10?

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Postby SusieO » Sat Feb 24, 2007 7:59 pm

My b/p was fine this morning and about an hour after taking the Carnitine I could feel myself becoming very anxious and then took my b/p and it was 141/88 pulse 77 - 30 minutes later it went up to 153/95 pulse 76 and now 4 hours later it is 149/96 pulse 86.

I am stopping the carnitine and hope that will help. My b/p has always been great i.e. 120 and down to 110 over 67 to 80 with pulse 60 to 78.

Having mitral valve prolapse syndrome I can tell as soon as something is not right with my heart.

I really feel like the damage from taking the Lipitor has done a number on my body chemistry because I am unable to take so many meds that years ago I had no problems taking.
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Headaches from Q10

Postby Ray Holder » Sun Feb 25, 2007 9:57 am

Hi BeLinda
I was rather nonplussed by your post saying that Q10 gave you headaches, but as I have been rather busy, I had not followed the whole story until today, and it seems obvious to me that your blood pressure medications are to blame.

I would refer you to Dr Peter Langsjoen's "Introduction to Coenzyme Q10", which will come up straight away on Google, in it he explains how high blood pressure is caused often by Q10 declining with age and especially with statin use, because there is not enough energy available to your heart and the filling phase is not as strong as it should be, so there is back pressure on the output side, and BP rises. He goes on to say that those taking Q10 can often reduce their BP meds by up to 3 drug types.

I believe that you should monitor your blood pressure, I have done so for the past 4 years while taking Q10. I used to take Diltiazem, Bendrofluazide and Isosorbide Mono, but have been able to drop the first two and only take Ismo to keep my arteries open, as any extra concentration or stress sends the adrenaline around and up goes BP. I take mine before breakfast and again in the middle of the evening. I found myself feeling faint after my breakfast with the other two meds, and my BP had fallen very low. As another poster said the other day, I control my BP mainly by regulating my Q10 to maintain it at , usually in the 140s/80s, which isn't bad for an 85 year old.

If you do this, I suggest that you cut down on a beta blocker firstly, if you take one ( their name usaually ends in -olol), as they reduce Q10 just like statins, and are being phased out in UK. Q10 makes your heart work more normally, the BP meds only interfere with heart or blood pressure mechanism.

SusieO, Q10 has been used in mitral valve problems, you may not be taking enough, and L carnitine is also needed by the heart to enable it to use fat needed for fuel for 60% of the time. Q10 and Carnitine are just man made versions of substances made and needed your body, and are not drugs which alter you body' workings.

Ray
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Postby Biologist » Sun Feb 25, 2007 1:19 pm

For what it's worth, I think Ray is on the right track. I cannot comment on the specifics, because I don't know enough about various BP medications and their interactions. He probably does from personal experience and self-education, plus he has no incentive to give bad information, but rather the opposite. Regardless, in principle, his over riding logic is certainly very correct, in my opinion.

It is unfortunate that doctors do not know enough about CoQ10 to properly factor it into treatment decisions. It is a vital but missing piece of the puzzle since it addresses the ROOT OF THE PROBLEM rather than just treating symptoms, which the drugs are intended to do. They are not supposed to know about CoQ10. They are not rewarded for knowing about it. (In fact, they could get in trouble for it by their regulators -- some other time on that issue though. :) )

Pharmaceutical companies educated doctors. That is where they get their information. These companies have no incentive to educate doctors for "fixes" that do not provide for long term drug sales. Also, economically, they have no incentive for curing disease either. Think about it. It is the long-term treatment of symptoms with their products that they seek. And get. (Some would argue it is a violation of the law for drug companies to actually Cure diseases since their legal obligation is to their shareholders who would be financially damaged by the curing of diseases, but we'll stay away from that one too, if you don't mind. :) )

However as one quick example: When the (simple and inexpensive) cure for the common stomach ulcer finally came out, drug companies took a financial beating. They cried.

I sympathize with others who still believe in our thoroughly profit driven healthcare system. It's tough to figure out. One poster recently commented that her doctor actually seemed relieved and "happy" for the first time when she finally laid down the law: "No more statins for me!" to paraphrase her. The poster indicated some surprise and confusion by his reaction. Not me. Made perfect sense. Why? Doctors, like all people, take the course of least resistance when they can -- if they can find it. She made the answer to his conflict-of-interest dilemma dirt simple, AND AT THE SAME TIME, the correct decision was now at hand for the patient -- which is something most humans, particularly doctors, want as well. A new "course of least resistance" for the doctor was established. (It removed all personal Cognitive Dissonance issues for him, but we'll stay away from that level of analysis for now too. :) ) He had duly pushed the "Party Line" for the drug companies to whom he is indebted and of whom he fears, and she simply declined. So he won. He "did his job" as instructed, but the right thing happened in spite of it: She refused.

So he was happy.

Biologist (and part time arm chair sociologist, psychologist & economist :) )
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Postby cjbrooksjc » Sun Feb 25, 2007 4:05 pm

Biologist, Ray, SusieO: Here is an excerpt from the 'On-line Medical Dictionary' for L-Carnitine.
Susie, I would suggest you arm yourself with as much information as you can comfortably utilize before you decide to take or not take L-Carnitine. That said, based on this excerpt, it would seem you may likely benefit from the suppliment; it's a simple amino acid. EXCERPT BELOW:

FROM THE ON-LINE MEDICAL DICTIONARY: Carnitine has been shown to have a major role in the metabolism of fat and in the reduction of triglycerides by increasing fat utilisation. It transfers fatty acids across the membranes of the mitochondria where they can be utilised as sources of energy. It also increases the rate at which the liver uses fats. By preventing fatty build-up, this amino acid aids in weight loss and decreases the risk of heart disease. Carnitine has been shown to be deficient in hearts of patients who have died of acute myocardial infections.
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Postby cjbrooksjc » Sun Feb 25, 2007 4:24 pm

SusieO: I pulled the trigger a little too quickly on l-carnitine. Here is another excerpt from the OMD that may be helpful:

FROM THE ON-LINE MEDICAL DICTIONARY: (Re: L-Carnitine) It is CONTRAINDICATED for people with liver or kidney disease or diabetes. It has proven helpful in improving lipid metabolism and reducing elevated total lipids, cholesterol and triglycerides in people with cardiac problems and diabetes, but should only be taken with medical supervision in these conditions.
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Postby SusieO » Sun Feb 25, 2007 4:41 pm

Thanks CJ! While these supplements work for many I have come to the conclusion that most of them will not work with my metabolism as well as my other heath issues I deal with.

Today my b/p was up some this morning and now it is back down to almost normal. Last check it was 125/78 pulse 66. When it was up as high as 163/101 pulse 99 I was about ready to go to the ER last night. They say high b/p is the silent killer, but with my mitral valve problems I am so intune to my every heart beat that I can usually sense when something is not right.

I have pretty much come to the conclusion I have to just let things heal on their own like I did the other times when the "flare-ups" have taken place. As far as my cholesterol I am waiting to hear from the doc this week - had it checked last week. I know it will be over 200, but I feel anything under 250 for me is good and if my HDL is over 41 (what it was last year) I will be happy. Now my triglycerides are another problem...last year 417, but year before they were 431. So, each year they have all gotten a little better (off of Lipitor). I know if I could exercise I could lower the triglyc more, but it is just out of the question for now.

I appreciate all the input from everyone, but since we all have been damaged in different ways and have a totally different genetic make up what works for some may not be the right thing for someone else no matter what. I know my body better than anyone else! :D

All the best!!!
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Postby Biologist » Sun Feb 25, 2007 5:14 pm

CJ / Brooks:

Not saying SuzieO is not right. She sure may be. You and I have both complained about feeling like a Pez Machine. AND, who is to say that we may not be taxing our livers in processing all these goodies? BTW, Darrell mentioned that he takes 2,500 mg of carnitine a day. That's a lot, but I currently take a total of 3,000 per day (1,500 mg of acetyl-L-carnitine & 1,500 of l-carnitine in two dosages, morning and evening, on an empty stomach). The concern of too many pills on the liver has not escaped my attention. I'm doing something about it. That's why I have recently started taking two 200 mg pills of SAM-e everyday for liver health! :D

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Postby cjbrooksjc » Sun Feb 25, 2007 6:51 pm

Biologist: Who knows what might be best. Without the advice of unpredjudiced med professionals we all have to make our own way. I'm trying to lower my suppliments until I feel a lack of improvement and am down to 1gram of co0Q10, 1 gram of Acetyl and 5Mg of straight l-Carnitine. Carnitine causes the cells to clean house, right? That in itself could cause the body to elevevate BP to manage the refuse; I just don't know. This is a complex ship we inhabit, and I sure don't know how all the systems inter-react. I remember seeing a formula to calculate the efficiency of a Deisel engine; it was astounding, but it was nothing compared to the complexity of the human body. Common sense, dumb luck, and realtime internet feedback MAY bring us to a positive result.

Regards,

Brooks
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Carnitine

Postby Ray Holder » Mon Feb 26, 2007 6:41 am

cj/brooks post about carnitine etc states he is on 1gram CoQ10 daily. I take 800 mg daily in 3 doses, and I suspect that my deficiency is much greater than most, as I believe I am on the verge of heart failure without it. One authority stated that excess Q10 or carnitine results only in expensive urine!!

As for carnitine, it is a necessary factor for everyone in everyday living, it is not a cell cleanser. It only reduces triglycerides by using them for their intended purpose, that is, to carry fat into the mitochondria to fuel the muscles etc, so when they have been so used, there are fewer left behind to circulate. It then carries waste products away on an everyday basis, as long as statins have not depleted the supply. Acetyl carnitine does nothing for me, I suspect that Lcarnitine is necessary in the long term to prevent slow muscle wastage. Acetyl is not needed as well, as the mitochondrial action converts it for that function. One finds carnitine palmitoyl transferase 1 and 2, in the literature, I suppose one is carrying the fat in and the other the waste out, but I can't find all the story.

So much written today is on the cholesterol bandwaggon that it is not easy to find unbiassed information, personally, I take little notice of anything from a commercial source, someone quoted Life Extension, but they are in the business of selling supplements, (and the one pot of carnitine which I got from them was of very poor quality)

I have seen the warning about kidney etc damage, I have a poor measured kidney action, but I take 6 grams of carnitine daily and it has not worsened my kidneys. The Q10 gave a small improvement when I started that 5 years ago.

There is little real information available on carnitine, the best paper I have read is by Fernando Scaglia, via google, but that is written from a pediatric point of view, with later life happenings also included. He quotes factors which can deplete carnitine, including surgery and some drugs, but he had not heard of the effects of polio, or of statins,

Ray
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Postby cjbrooksjc » Mon Feb 26, 2007 11:19 am

Ray: Thanks for your post. The best input is based on experience, and I am a total beginner compared to you and many others on the site. The more info I have the better off I should be, but DARN, am I confused about the Carnitine suppliments. I AM doing better tho since dropping the Niacin from my regimen. I'm going to keep taking both Carnitines, and, if another version is distilled, I'll probably add that one to the mix.

Regards,

Brooks
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My legs collapsed on me while at Disneyland

Postby bunnylady » Fri Apr 20, 2007 3:47 pm

I was skeptical about taking my granddaughter to Disneyland- how in the world would I walk? My orthopedic doctor gave me Cortisone in each knee (as they really got bad after Lipitor) and a Medrol pack in case I needed it- he told me to rent a scooter but they were hard to come by- I finally got one on the last day we were there- While waiting in the line for the Jungle boat they had steps that take you up and down ( a people mover and served no purpose) knew I wouldn't make it up those steps so my daughter got someone to help us and they pulled me out of line right into a boat- on getting out a gentleman offered me his arm and as I was stepping out I collapsed all the way to the floor- I knew my muscles had just given out on me- I went back to the room and napped- I took ALL of my spacedoc vitamins with me and faithfully took them every night- they helped immensly- when I got home I just rested and failed to take them and felt awful- upon taking them again I immediately felt more energy and less muscle pain so I now they work!
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Headaches from COQ10?

Postby JanNelson » Tue May 29, 2007 10:53 pm

BeLinda and Suzie O
Did either of you read the label warnings on CoQ10? When my MD prescribed it after I had long duration heart palpatations after 10 days on Lipitor, I had one adverse reaction after another, including headaches. Then I read the label and it says 'Consult doctor before use if you have, or have had, rheumatoid arthritis or other autoimmune disorders'.

Having had both (polio and chronic fatigue syndrome)....I stopped the CoQ10 and the problems stopped. Instead the MD put me on 5000 units of Vitamin C per day and it seems to cause no problems.

Right now I am visiting the radon health mine in Montana which stops all arthritis pain for up to a year.....your rheumatologist may pooh-pooh it, but it works without any pills.

Jan
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Postby SusieO » Tue Jun 05, 2007 11:14 am

Hi Jan!

I purchased the Sundown brand of CoQ10 and no where on the bottle/label does it say anything about any type of side effects. It does say consult your doctor should you have any adverse effects.

I have tried to take CoQ10 (as well as some of the other supplements many folks take for statin damage) many times over the past few years and each time the headaches start and as soon as I stop taking it the headaches go away (after a day or two).

Personally, I am very skeptical to take anything anymore no matter who says it will be good for my body...a doctor or someone on one of the boards I frequent because we each have different metabolisms. :wink:

I do take a daily 81 mg. aspirin.
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Postby cjbrooksjc » Tue Jun 05, 2007 3:18 pm

Susie: CoQ10 lowers BP. The proiblem you are having may be due to low BP which can cause headache. Just food for thought.

Regards,

Brooks
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Postby Ray Holder » Tue Jun 05, 2007 3:19 pm

Hi Jan and Susie

Q10 has few side effects, most are not side effects of Q10 itself, but are due to other drugs being taken, which are no longer needed because Q10 has put matters right. A rash is sometimes reported, and stomach problems if regular anti acid tablets are taken, as this allows a yeast to grow in an alkali stomach. I have had polio, and post polio syndrome, and take 600 mg of Q10 daily, so its not that. I also have rheumatoid arthritis, as well, and I take a small aspirin daily.

It is a great pity if your bodies cannot handle Q10, it is a lifesaver to many, literally so for me, but if you cannot, you have my sympathy, but I would not like others to be put off from trying it, there are normally very few side effects as it is not a drug, but a necessity of life.

Interesting that heart palpitations started so soon on Lipitor, a sure sign of statin induced Q10 deficiency, fortunately it must have just temporary and seems to have come back to normal, or your side effects would have got much worse.
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Postby SusieO » Tue Jun 05, 2007 3:20 pm

Hi Brooks and thanks! I take my b/p on a daily basis due to some other medical problems and I don't think that is why I get the headaches from the CoQ10.
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Postby Ray Holder » Tue Jun 05, 2007 3:24 pm

Sorry, I was previewing and off it went, with an altered word in the wrong place.

Anyway, I wish you both all the best, and hope you find something that helps you.

Ray
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Postby cjbrooksjc » Tue Jun 05, 2007 3:41 pm

Susie: What I am saying is that you are doubling up on BP meds: your usual meds lower BP and SO DOES CoQ10. Together they may lower your BP to a point that causes headache. I hope this is true for you because C0Q10 therapy is the ONLY recognised, beneficial supplement I can find in any medical reference. L-carnitine does me a world of good, but it is of questionable value in medical circles; I still recommend statin suferers take it (L-carnitine). Ck your BP after taking CoQ10 (when your head aches) and seee if your BP is lower that usual. Maybe you can cut your BP meds a bit. Is that clearer?

John
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Postby Ray Holder » Tue Jun 05, 2007 3:47 pm

Susie, your post popped up while I was altering mine.

The B/P med is almost certainly the cause of the problem, like many others, I have been able to stop Diltiazem and Bedroflumethazide since taking Q10, in fact, I would almost faint after my breakfast because Q10 had improved my B/p through improving my heart action, and the B/P drugs then dragged it down too low. This will be seen on "an introduction to Coenzyme Q10" by Dr Peter Langsjoen" via Google

Don't despair!!

Ray
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Postby cjbrooksjc » Tue Jun 05, 2007 3:59 pm

Suz: Sorry, after rereading your earlier post it is not clear to me you are actually taking BP meds or simply taking your BP. If you have low BP - CoQ10 will lower it even more. If you can tolerate even a little (30mg daily) CoQ10, it can, as a statin damage sufferer, only do your heart good. Ask yr Dr. when the best time might be to take a little CoQ10 - AM or PM. It is SO important to recovery.

Brooks
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