taylortotmom

Coq10- Any Experience?

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Hi, everyone. My cardiologist suggested (actually he highly recommended) I start taking Co Q 10. Have any of you had experience with this- he was quite enthusiastic about it. I trust him and I have done some research myself- do any of you have firsthand experience? What specifically has it helped or not helped?

Hope everyone is doing as well as you can- I have been very blessed with a mild remission over the past few months and received an excellent cardio visit/report on Friday- yay!

Carmen

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I'd love to hear the answer to this. I've been spending $$$ in the last few months purchasing a supposedly bioavailable brand of CoQ10 and using it. I have no idea what I am accomplishing by taking this. What is it supposed to do?

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I started at 50 mg and now take 60 mg. I've been on it for about a year. I felt an increase in my energy level right after I started taking it. My cardio told me the only thing it's been studied for is cholesterol and my cholesterol has dropped. I'm happy to be on it and plan to keep using it.

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I've taken it in the past without anything bad happening. Can't say if it did any good, but if there's evidence it might help me, I'd try it again.

Nina

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It makes sense that it helps as it aids energy levels at the cellular level. There is a study that demonstrated that it results in a substantial reduction in blood pressure which MIGHT be bad for POTS people - or atleast some POTS people.

But PLEASE let us know how it goes. Many cardios think its a wonder enzyme!

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i was prescribed CoQ10 in pretty hefty doses - upwards of 900-1200mg daily (no, not a typo) - when the possibility of my having a mitochondrial disease first surfaced. my dosing was based on blood work showing CoQ10 levels in my blood, something i've since found out from a more expert source (aka top mito doc in the country) is a diagnostic tool that can certainly be helpful as PART of the diagnostic/ prescriptive puzzle but is not always a direct/ concrete indication for specific dosing (something my prescribing doctor at the time, however well-intended, seemed to prescribe to a bit too concretely in his forays with mitochondrial disease suspicion/ diagnosis). so i by no means think that those of you interested in the discussion should necessarily run to your docs asking for blood levels to be drawn b/c, as an independent entity, the resulting info won't be particularly helpful. but with that said i'll get back to my experience(s).....

based on severely deficient blood work i was started on 600mg daily & during a period of about a year topped out at either 900 or 1200mg (memory failing me here with specifics & not relevant enough to matter); at one point i was in fact told to increase my dose even higher - again based on blood work, as the already high dose i had taken for months hadn't seemed to correct my apparent deficiency - but for various reasons (including but not limited to the exorbitant cost as well as my increasing difficulty with keeping any food/ liquid/ meds down) i didn't end up doing so.

some of you may be shocked by the high doses i was on but it is not at all uncommon for many of those with suspected or confirmed mitochondrial disease to be placed on similar or even higher doses as part of what's known as the "mito cocktail". at first i thought that the CoQ10 might have been helping me a bit cognitively in a way that could perhaps be described as mental energy, specifically in that i could focus/ read/ pay attention better so that during "better" minutes/ hours/ days i could lay down & read a book, could watch an hour TV show &/or entire movie without repeatedly losing focus &/or falling asleep, etc. i thought this b/c after months of intense struggle in this arena (the final though certainly not only straw in my being forced out of grad school :( ) about a month after starting the CoQ10 i did see some improvement in this realm. that said, more comprehensive hindsight leaves me relatively sure that the CoQ10 was not the key factor in my improvement but rather it was a result of the fact that i was finally receiving sufficient nutrition & hydration after months of increasing malnutrition (as i started on total IV nutrition & hydration a few weeks prior to starting on the CoQ10); while i obviously can't prove that the CoQ10 didn't support &/or in my body & mind's "recovery" of sorts from its nutritionally deficient/ malnourished/ starved state - there's a chance that it provided a welcome boost - i can say with relative confidence that it wasn't the sole factor in my cognitive improvement.

realizing that, in addition with the rest of my meds, the severity & chronicity of my nausea & vomiting (due to gastroparesis & intestinal pseudo-obstruction) i wasn't absorbing the full amount of CoQ10 i'd been taking, once i got my J tube i started taking it that way which in practice was likely the equivalent of increasing my dose (as i had likely not been actually absorbing the dose i'd been taking up until then, at least not on a consistent basis). after doing that for several months, however (wherein i was shelling out even more $$ for hefty doses of the top research-grade liquid CoQ10 than i had already been for the similarly top-grade tablets) i pow-wowed with any/ all of my involved docs (which for various reasons no longer included the doc who had originally prescribed the supplement) and while they had never opposed my trying it nor doubted the possibility of it doing some good, none of them had any issue with my stopping it.

with the support of my assorted doctors i did just that (stopped it) and in no way have noticed any negative(s) in doing so. taking it certainly never did me any harm physically, but whether a prescription med, supplement, or anything else for that matter, i prefer not to put things in my body that i'm not convinced to be necessary in some way (be it symptomatic benefit, reliable/ standardized blood work &/or testing, etc).....not to mention that for something that didn't seem to be offering me physical benefit it was certainly taking up a notable chunk of my already tight budget! some time after i stopped taking the CoQ10 i saw one of the top mito specialists in the country/ world - my initial prescribing doc was a neuro who mostly works in the realm of dysautonomia but who has some interest/ knowledge in mito disease as well (perhaps one of those "knows just enough to be dangerous" scenerios?! :) ) - and my initial appointment/ evaluation with this "top doc" did include a brief discussion of my trial(s) with CoQ10. without delving into the issue too deeply he seemed to think my dosing had been reasonable but also agreed that, without symptomatic improvement on the supplement nor negative symptomatology upon cessation, there was - at least for the time being - no real reason for me to continue to taking it.

i have met &/or talked with some who are quite certain that CoQ10 is a key positive factor in their own ongoing regimen &/or that of their child(ren) and i don't doubt that this might be the case in some situations - mitochondrial diagnosis &/or otherwise - as i know that there has been & continues to be some suggestive research in the realm of CoQ10's use within a wide variety of etiologies/ diagnoses. with a good argument i certainly wouldn't be opposed to giving it another try in the future, but i would need a GOOD reason to do so as my experience thus far has proven unconvincing as far as it pertains to at least my own situation.

hope this helps,

B) melissa

p.s. amongst many/most of those very involved in research &/or prescription of CoQ10 in mito patients (amongst others) it is fairly well agreed upon that not all CoQ10 is created equal &/or in other words not everything you see labeled as such at the grocery/ drug store &/or sold online is what it says it is in the amount that it says it is. while the more highly regarded varieties are a tad bit pricier, in reality ALL CoQ10 is relatively pricey with the argument being that it's much better to spend a tad bit more for a more guaranteed product (rather than spend just a bit "less" of a lot of money & not be as certain of quality &/or quantity/ dosage). this is NOT a push for a certain brand/ manufacturer as there are several that are considered more reliable/ trustworthy amongst the "CoQ10 elite" so to speak but just figured i'd include the info to round out my comments/ experience.

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I did look into this. I think you have to take it daily for at least 3 months before there would be any improvement - it's not something where you can expect immediate changes.

I could see the logic that it might help, but I don't think you can tell in advance if it is something that would help you as an individual (it's not for general application; most people wouldn't need additional Coq-10). Some people recommend supplementing other mitochondrial enzymes and I must admit that at this point I started to doubt whether this strategy was a good idea. Where do you stop? And for those of us with POTS/EDS, this seems unlikely to be a critical factor.

In practice I bought the Coq10, didn't take it very often (I'm not very good at compliance with supplements, particularly when there are no quick results) and not surprisingly given my lack of compliance, it didn't do anything. That said, if I find that lots of people here report an improvement, I would be happy to give it a proper chance as it seems harmless enough.

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ramenkatesh,

can you point us to the study that said it was not good for POTS patients? Since some docs seem to be suggesting this, it would be good to have something to quote.

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without wanting to speak out of turn, i'm pretty sure that the study doesn't specifically say anything specific in regard to it being bad for POTS patients but rather that the study presents some indication that, if taken consistently, CoQ10 might aid in lowering blood pressure. again, i'm not certain (& obviously am open to correction) but think that ramakentesh then followed that train of thought with the reasonable logic that this property (lowering blood pressure) could be a bad thing for those with POTS/ Dysautonomia.

while this isn't an illogical jump in theory & while there's no harm in factoring in the varied research that has been & continues to be done with CoQ10 as it relates to a wide variety of diagnoses/ etiologies/ pathologies, in reality the application of the study to a different population (i.e. POTS/ Dysautonomia) doesn't hold water b/c the studies that have been done re: CoQ10 & any properties it might have to aid in lowering blood pressure are in the context of dealing with HIGH blood pressure such that, without knowing a lot more about the mechanism behind CoQ10's seeming ability to help reduce/ control HIGH blood pressure it doesn't necessarily follow that it would have the same effect on individuals with normal &/or lower blood pressure. without rambling on & on the bottom line is that the mechanisms behind blood pressure, high blood pressure, etc are simply too complex to carry over the results from the one study & apply it to POTS/ Dysautonomia. so, while i understand the appeal of having something concrete to quote, unfortunately it's not likely (at least not at this point in time) to be that simple :) .

again that does NOT mean that sharing/ discussing results of other studies - incl. those with some mention of relevant issues such as BP - might not be worthwhile. and for any who managed to read my ramblings re: CoQ10 further up in the thread/ discussion i am certainly not trying to push CoQ10 on anyone. this post is intended to be more of a general statement/ caution about clinical research studies than about CoQ10 itself. b/c clinical/ scientific research protocols & procedures are ingrained in my psyche to the degree that i had to jump in to caution against tempting (& initially seemingly logical) connections that in reality don't stand up in court (so to speak).

hope this helps,

:( melissa

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I've heard it can also work as a migraine preventive. I've been taking 200mgs/ day for a year. At first, I felt more energy. Now it's hard to say. I generally had worse migraines a year ago, but many things are different, so wouldn't want to speculate causal relation. I'll keep taking it. Not sure I've been taking a fancy brand. any recommendations?

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Melissa,

Thanks for the clarification - and you're right - I read ramekentesh's post too quickly. It did just say it can cause a drop in blood pressure - not that it was necessarily bad for people w/ pots. And, you're right again - without knowing the mechanism behind why it reduces blood pressure in people with hypertenstion, it's hard to say for sure what it would do to those w/ hypotension. But, very good info to have and be aware of if you are going to try it.

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Thanks everyone for all the replies. My cardio said it could help with cholesterol and metabolism. Upon researching it, I have found it is often used with patients with congestive heart failure. Since many of our sxs overlap with CHF- it would make sense for it to possibly help us. However, I was very wary about the potential for lowering BP. However, my cardio did not mention the lowering of the BP- and he definitely knows my history and issues with chronically low BP. Anyway, if I can find some I will likely try it out and let you all know :)

Carmen

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I tried CoQ10 for a couple of months, but I didn't notice any effect good or bad.

Rachel

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I used to take it prior to being told I had vasovagal when my doctor told me to stop taking it, 200mg daily. She was concerned about the sudden drop in bp and today she suddenly tells me that it's okay to start taking it again after telling me my cholesterol was high, I told her it was confusion to be now it's okay to take the coq10???? 

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I used to take CoQ10 as suggested by a physician I was seeing.  She had also suggested a high quality multivitamin. I initially thought I had a bit more energy but it did not last, so due to the expense of medications as well as other supplements, I stopped the CoQ10, and could not tell any difference. If I remember correctly, she had commented it would be good for me to take since I am on a beta blocker.

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