Did I just slam the door on a PEM episode?!

SOC

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Here's the background~

Daughter and I flew down to INIM late last week for our semi-annual visit. Because we are both doing much better and disability services at Miami Airport are awful (not just inefficient, but insulting, humiliating, and downright rude), we decided to walk Miami Airport instead of wheelchair it. It's a BIG airport. So it's quite possible we overdid to the point of PEM, although we tried to be careful and felt fine in the moment. We were tired during the trip, but it seemed normal tiredness from more than usual activity, not PEM.

Saturday we were home when the exhaustion hit. You all know it. It's not tired from doing a lot; it's that utter exhaustion of PEM. PEM hitting after three days would be about right for me, maybe a day or so early. I wasn't convinced it was PEM yet.

Sunday we felt even worse and the muscle aches started. By Monday my cognitive function was severely declined, I was exhausted beyond belief, and every muscle in my body ached and was very stiff. No swollen lymph nodes or the like, though. Still, I was pretty sure it was PEM. :(

I had a long workday I had to get through since I took three days off last week, so I can't ask my clients for more time off unless I'm bedbound. Lunch time rolled around and I wasn't sure I was going to make it through the day. It was one of those WTH moments. I usually take 1200 mg of ubiquinone in the morning and 600 mg at noon. I decided WTH, and took 1200 mg at noon also. That's the max dose I'm willing to try until I do further research. I had in mind some research Dr K mentioned in which healthy people (athletes, I think) were heavily exercised and then given CoQ10. The researchers found NO signs of 'damage' (I'll have to look up my notes as to what damage -- oxidative stress or muscle breakdown indicators?). The CoQ10 seemed to have eliminated the negative consequences of the heavy exercise. Worth a try, I thought.

I got through the afternoon. By late afternoon I noticed an interesting feeling that's hard to describe. I felt tired like I needed a nap (not sleepy, just tired), but I didn't feel that heavy muscle exhausted feeling. It was a bit like I was still mentally exhausted but my body wasn't exhausted anymore....? I had dinner and went to bed early.

I woke up this morning fine. :jaw-drop: Okay, not completely fine. I'm maybe 80-85% of my baseline, but I feel fully capable of putting in my full workday, I just feel a little tired. Not exhausted, not even very tired. Just a little. Muscle aches are minor. My cognitive dysfunction is also a little below baseline, but not much.

This is not at all typical of PEM for me. Ordinarily I get worse over several days until I'm too exhausted, mentally worthless, and in pain to put in my workday and I end up in bed. Then I slooooowly come out of it over several weeks. The fastest PEM recovery so far was 10 days.

If this was PEM, then I should have gotten worse over a couple more days, spent a day or two in bed, and then struggled through at least another week at about 50% of my already low baseline. Instead, I had a sudden turnaround. o_O

Today I took 2400 mg again. We'll see how I feel tomorrow.

I don't intend to take 2400 mg of ubiquinone routinely, but if I can mostly shut down PEM with a massive dose of ubiquinol, this could be huge for me since PEM ordinarily knocks me down for 2-8 weeks. However..... this is not an experiment I'm willing to undertake deliberately. I'm not going to purposely PEM myself on the chance that I might be able to cut it short with a massive dose of ubiquinone. Still, if I end up PEMing myself again some time, I'll probably try the CoQ10 again, although probably ubiquinol next time.

Any theories why this might have worked? Assuming that it did -- no guarantees yet. It's early days.
 
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@SOC Sorry I missed you! But funny enough I did the same thing and it worked as well ( I increased the whole mito combo not only the coq10)

The coq10 works I have gone as high as 1200mg ok. I have no doubts it does that and more for me. I always have to reduce because of money not becuAse of efficacy. I also asked DR K if my body would stopped producing if I take the 1200mg as a regular dose and she said that your body will not stop its own production ( the main reason I always went down to the 800mg).

I decided to go permanently at 1200mg now. 400 am, 400 11am, 400 2pm


I cannot do Mito supp after 2pm or won't sleep
 
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I really like the effects of Coq10 but I have gotten insomnia the last few times, despite taking it early. I'm not giving up on it though as it's one of the most promising supplements I've tried. Time to trial it again in a small amount soon.

I really hope this is a breakthrough for you SOC!
 

SOC

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@SOC Sorry I missed you! But funny enough I did the same thing and it worked as well ( I increased the whole mito combo not only the coq10)

The coq10 works I have gone as high as 1200mg ok. I have no doubts it does that and more for me. I always have to reduce because of money not becuAse of efficacy. I also asked DR K if my body would stopped producing if I take the 1200mg as a regular dose and she said that your body will not stop its own production ( the main reason I always went down to the 800mg).

I decided to go permanently at 1200mg now. 400 am, 400 11am, 400 2pm


I cannot do Mito supp after 2pm or won't sleep
It was so disappointing that we didn't get to do more than say hello! :(

I haven't tried to take CoQ10 after lunch time because I'm concerned about being able to sleep at night. I might try it some weekend when I can afford to be awake into the night. ;)

I'm really starting to wonder if there isn't an acquired mitochondrial disorder going on here... but who knows?

I'm sticking at 1800 mg for the moment, except during a PEM episode when I'm trying 2400 mg. Dr K said the 1800 mg was fine if it's working for us, but suggested we split between ubiquinol and ubiquinone.
 

SOC

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I really like the effects of Coq10 but I have gotten insomnia the last few times, despite taking it early. I'm not giving up on it though as it's one of the most promising supplements I've tried. Time to trial it again in a small amount soon.

I really hope this is a breakthrough for you SOC!
I'm beginning to think it is a big breakthrough for me. I had a big improvement about a year ago, but since several things changed it was hard to know what specifically caused the improvement. As the year passed, it has begun to settle out that the high dose CoQ10 is probably the major factor. Who knew? After years of taking 200 mg to no noticeable effect, I thought CoQ10 didn't do anything for me. Wrong. I wish I had a dollar for everything I have been wrong about with this damned disease. :rolleyes:
 
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SOC

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@SOC
i wonder if u took the extra high doses before and during times and activities when you expect pem if u can avoid it?
Based on what Dr K said, and my experience this week, I'd say that could be possible. I think it more likely that rather than completely avoiding PEM, it might be possible to reduce it or raise PEM threshold so you can do more before PEMing.

I plan to try extra high dose before and during next time I know I have to overdo and see if it helps. [Eyes on the upcoming daughter wedding]
 

Hip

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Very interesting experiment and discovery @SOC.

I have added this thread to the other PEM treatment threads listed in this post on PEM busters.



I wonder if the MitoQ that @cigana mentioned above might work as well or better than Q10. MitoQ is just ubiquinone bonded to a fat soluble molecule to aid mitochondria penetration. I understand that MitoQ accumulates in the mitochondria at levels up to 100 to1000 times higher than ordinary Q10.

So that presumably means that one 5 mg capsule of MitoQ is equivalent to up to 500 mg to 5000 mg of Q10.

MitoQ is something I keep meaning to try myself.
 

SOC

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Very interesting experiment and discovery @SOC.

I have added this thread to the other PEM treatment threads listed in this post on PEM busters.



I wonder if the MitoQ that @cigana mentioned above might work as well or better than Q10. MitoQ is just ubiquinone bonded to a fat soluble molecule to aid mitochondria penetration. I understand that MitoQ accumulates in the mitochondria at levels up to 100 to1000 times higher than ordinary Q10.

So that presumably means that one 5 mg capsule of MitoQ is equivalent to up to 500 mg to 5000 mg of Q10.

MitoQ is something I keep meaning to try myself.
I've read about MitoQ, but I haven't been able to decide whether I think their story is scientifically legit or just advertising hype. If you try it, let us know what you think. It will be good to have another report in addition to @cigana's to see if it's a one-off thing or if it's working for a number of people we actually know something about.
 

heapsreal

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Very interesting experiment and discovery @SOC.

I have added this thread to the other PEM treatment threads listed in this post on PEM busters.



I wonder if the MitoQ that @cigana mentioned above might work as well or better than Q10. MitoQ is just ubiquinone bonded to a fat soluble molecule to aid mitochondria penetration. I understand that MitoQ accumulates in the mitochondria at levels up to 100 to1000 times higher than ordinary Q10.

So that presumably means that one 5 mg capsule of MitoQ is equivalent to up to 500 mg to 5000 mg of Q10.

MitoQ is something I keep meaning to try myself.

It would be interesting to hear from others who have tried both as i wonder how much us advertising hype. Increasing accumulated levels with mitoQ does it correspond to the same level of effect and especially worth the money, even high dose q10 is costly.
 

SDSue

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I've read about MitoQ, but I haven't been able to decide whether I think their story is scientifically legit or just advertising hype. If you try it, let us know what you think. It will be good to have another report in addition to @cigana's to see if it's a one-off thing or if it's working for a number of people we actually know something about.
I tried Mito Q for a couple of months and noticed nothing. But, it may not have been a fair trial - it’s so dang hard to know if something is working until you stop taking it, and then there are always other confounders.

Remind me what brand you’re using? thx
 

Hip

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I've read about MitoQ, but I haven't been able to decide whether I think their story is scientifically legit or just advertising hype. If you try it, let us know what you think. It will be good to have another report in addition to @cigana's to see if it's a one-off thing or if it's working for a number of people we actually know something about.
If you search PubMed for MitoQ, you get loads of results, suggesting it's not just advertising hype. It seems to be a well researched compound.


I guess though that I ought to first try regular Q10 at the sort of doses you are taking, ie, 1200 mg or higher. I think the most Q10 I have every taken in one go is 600 mg, and I did not notice much from that, except a slight mood boost. So given this lack of effect, I may not notice much with MitoQ either.
 

SOC

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I tried Mito Q for a couple of months and noticed nothing. But, it may not have been a fair trial - it’s so dang hard to know if something is working until you stop taking it, and then there are always other confounders.

Remind me what brand you’re using? thx
Healthy Origins seems to be working for me. Dr K said to make sure that you get a brand that uses Kaneka-manufactured CoQ10, which Healthy Origins does.

I took Doctor's Best for a while because it was cheap. False economy. :rolleyes: It's not in a fat-based carrier, which means it's not as easily absorbed, I've learned, and it's not Kaneka. It didn't seem to do me any good.

Indeed, there are always too many confounding factors. I probably had evidence more than a year ago that higher dose CoQ10 was really helping, but there were so many other things going on that I wasn't sure what was what.
 

heapsreal

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I was using 100mg of q10 for a long time but didnt notice much. I increased it to 400mg and got an energy increase. Not sure if its tolerance or not or if after awhile the effects arent as noticeable as they first were .

After reading these threads about q10 today i increased my dose from 400mg to 800mg and im noticing some extra energy but its only one day and hard to know if placebo?

also is dosing more frequently than once a day needed? And what is the half life of q10?
 

heapsreal

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Healthy Origins seems to be working for me. Dr K said to make sure that you get a brand that uses Kaneka-manufactured CoQ10, which Healthy Origins does.

I took Doctor's Best for a while because it was cheap. False economy. :rolleyes: It's not in a fat-based carrier, which means it's not as easily absorbed, I've learned, and it's not Kaneka. It didn't seem to do me any good.

Indeed, there are always too many confounding factors. I probably had evidence more than a year ago that higher dose CoQ10 was really helping, but there were so many other things going on that I wasn't sure what was what.

Drs best has bioperin which is suppose to help increase absorption and if taken with some fatty type food should also help?
 

SOC

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Drs best has bioperin which is suppose to help increase absorption and if taken with some fatty type food should also help?
Should. Didn't seem to work that way for me, but I'm just one data point. :D

Dr K was very clear about the Kaneka CoQ10, so I'm sticking with brands with that for now.
 

pogoman

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It was so disappointing that we didn't get to do more than say hello! :(

I haven't tried to take CoQ10 after lunch time because I'm concerned about being able to sleep at night. I might try it some weekend when I can afford to be awake into the night. ;)

I'm really starting to wonder if there isn't an acquired mitochondrial disorder going on here... but who knows?

I'm sticking at 1800 mg for the moment, except during a PEM episode when I'm trying 2400 mg. Dr K said the 1800 mg was fine if it's working for us, but suggested we split between ubiquinol and ubiquinone.
I read your first post this morning and decided to try increasing my coq10 (ubiquinol) dosage from 100mg twice daily to I think 6 or 7 times total today.
I did notice I had more energy and less pain at work, maybe even the same amount of pain at the end of the day but it didn't fatigue me like it usually does.

For me I had found last year that coq10 and riboflaving together improved pain and fatigue noticeably.
I had settled on 200mg per day after starting on other amino acids and methylations supplements but have recently hit a plateau on improvments.
I am wondering if the mito and methylation supplements used up the coq10 levels I had built up earlier.

Have you had gastro issues taking that many capsules a day?
Plus I'm sure its expensive lol