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douglas

Co-enzyme Q10!

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What does Anyone know about treatment using this? It is widely used in Japan and there is a lot of research done to support it? Does anyone have an oppinion or personal experience with it or coconut oil???

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This was an item I took for a while and I didn't notice anything. Now, maybe it was doing something. I just didn't notice.

In my book, it's one step in the right direction if I'm not worse off after trying something. :P

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i don't know anything about the research you're speaking of, but i take it b/c my actual bloodwork showed very low levels in my body and we're trying to bring me back to normal levels. this may or may not be a part of a possible mitochondrial disease diagnosis for me (wherein the levels are often low), something we're exploring.

it's not a cheap supplement but about a month after starting it i noticed a significant inprovement in my concentration/cognitive abilities. i had gone downhill in that regard very rapidly in a 6 month period (after having mild issues in that regard for my previous years of autonomic dysfunction). now i'm close to if not back to where i was about a year ago cognitively (NOT physically by any means) on most days.

obviously there's no way for me to know for certain if it was the CoQ10 or not but the timing was logical & my docs & i aren't willing to risk a backward slide at the moment by testing it out. i couldn't read a book for months and now - on a good day - can read for an hour plus at several sittings as long as i'm lying down.

i just had bloodwork done again last week to check my current levels & we may change my dose (in either direction) based on the results (which i don't have yet). i currently take 900mg daily.

i guess i'd be a bit skeptical of anyone pushing it as a "cure all" (as i am with anything proposed in this regard) but for me there was a measurable deficiency so it definitely made/makes sense.

you may also want to do a search as it's been discussed fairly recently.

i don't know anything about coconut oil outside of cooking.

:P melissa

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I take it along with Alpha Lipoic Acid and B vitamins. It's hard to know which helps the most, because I take all three suppliments, but I can say that since starting them, my energy levels have increased. It's not a cure, but every little bit helps.

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My doctor has told me to take 900mg of CO-Q10 daily along with many other supplements and vitamins because of my mitochondrial diagnosis (they call it my "mitochondrial cocktail"). I haven't been on it very long and haven't noticed any change in symptoms- and it is extremely expensive! High doses of it are used to treat parkinsons disease and mitochondrial diseases among some others.....if you find a cheap place to get it, let me know.

~Elle

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my brother took it for cyclic vomiting and it worked wonders for him. My mom gave me a bottle, but I havent taken it. I keep forgeting that its in the cabinet.

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I only take a small dose (30 mg.) because it gives me a stomach ache which makes the POTS worse, so I try to take it at night. It does help with giving me a little extra energy. What brand do those of you who take 900 mg. use? Martha

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Hi, Douglas.

Our bodies all make it. It is a critical part of the energy pathway, so every function which requires energy in the body means that CoQ10 is needed. And there are lots of ways it can become depleted.

Even though it isn't cheap, if you need it and can possibly afford it, get the best quality you can.

I hope it helps.

OLL

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yep, between my "mito cocktail" & the domperidone (which my PCP decided sounds like a wine) one wouldn't think i don't/can't drink at all! :)

here's info on the CoQ10 that i take that i'd written in a previous post:

i am on a "mito cocktail" of supplements though so thought i would quickly pass some CoQ10 info your way. it is NOT cheap and honestly i wouldn't trust a variety that was significantly cheaper than others. there is one, however, that is more highly regulated/monitored than others on the market so at least you know what you're paying for. obviously it's your call to make but my neuro felt that it was better to take this type & after i did some comparison shopping i realized that i was going to be paying an arm and a leg regardless. the difference with this one is that it is the exact type used for all NIH studies. there is also a chance that this specific formulation may actually become a prescription at some point which could be advantageous for those with prescription med coverage. the website is http://www.vitalinecoq10.com.

i take three 300mg chewable tabs daily which i usually keep down (not b/c of the meds, just b/c of my gastroparesis).

hope this helps,

:) melissa

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I've taken a low dose before and haven't noticed much. For one thing, the formulation and brand seems to correspond to its benefit, and those brands that are actually better incidentally are rather expensive. I'd say that if your cardiologist gives you the green light, it might be worth a shot- not necessarily to help with your POTS symptoms themselves, but for overall heart health and energy levels, maybe?

I dunno!

Let us know how you do with it!

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Thanks for posting that link Melissa. The brand on that site looks to be of much better quality than the brand I'm currently taking, so I'm going to switch over once my bottle runs out. :)

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my wife is currently being treated @ cleveland clinic since the local quacks don't understand pots or hemiplegic migraines. anyhoo, dr. stillman increased her inderal & effexor and added magnesium oxide (400 mg) & coq10 (150 mg). w/in 1 week's time on this new dosing she seems to be doing much better than just 2 weeks ago. both supplements are said to help increase proper blood flow to the brain to decrease the headaches (migraines w/aura). a little pricy! does anyone know of an on-line vitamin house that offers them cheaper than going to the local pharmacy or wal-mart, target, etc...?

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Coenzyme Q10 is an antioxidant. It has been studied at a dosage of 150mg daily and can decrease migraines. I hear that it costs about 40 dollars a month. In my experience, magnesium at 400 to 500mg daily works better for migraine prevention and is much cheaper.

It has also been studied for Parkinson's disease at much higher doses, about 1200mg daily. It might slow down Parkinson's disease but I only know of one preliminary study.

Karyn

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