• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Messages
11
Hi Jim,
Thanks for your quick response. Yes, I've heard that ubiquinol is better for some than the COQ10, but I guess you have to try each and see what works. MitoQ looks interesting too. I've been down the road a long time and anything that would let me exercise again would be treasured.
 

Mick

Senior Member
Messages
138
Have you had gastro issues taking that many capsules a day?
Plus I'm sure its expensive lol

I had gastro issues... to put it mildly... explosive diarrhea times 10 - that's what really happened. But I didn't budge. In August 2019 I simply started wearing diapers and that's how I survived. At that time I was taking 500 mg - 1000 mg daily. But the diarrhea started at 30 mg so the dose didn't really matter. I had to bring my level to normal - that's what mattered.

Now I can take 1000 mg daily in divided doses and nothing happens. Actually I am retesting high-dose ubiquinone as a PEM buster because I can't function normally...
 

pogoman

Senior Member
Messages
292
I had gastro issues... to put it mildly... explosive diarrhea times 10 - that's what really happened. But I didn't budge. In August 2019 I simply started wearing diapers and that's how I survived. At that time I was taking 500 mg - 1000 mg daily. But the diarrhea started at 30 mg so the dose didn't really matter. I had to bring my level to normal - that's what mattered.

Now I can take 1000 mg daily in divided doses and nothing happens. Actually I am retesting high-dose ubiquinone as a PEM buster because I can't function normally...

This is a thread from way back :D

If high dose coq10 helps, try vitamin B2 and l-carnitine into the mix if you haven't done that before.
Its the basic mitochondrial cocktail and its probably kept me going the past few years.

I've also started taking a water soluble coq10, licensed by Tishcon to Swanson and Qunol that I know of so far.
At high dose around 800 mg or more daily it was eliminating the muscle tightness and cramps that I take a muscle relaxer for.
But expensive, I am on the up side of symptom relief from my ritux treatment last month so I'm taking 400 mg daily now.
But I've been able to still stop the muscle relaxer so that's good.

Reading some of the posts in this thread is making me wonder if the bad insomnia that started last week is related to taking coq10 before bed.
I've stopped the other supplements like Tru niagen and NMN, its like my body is more sensitive to the stuff I've taken before without issues.
 

Mick

Senior Member
Messages
138
try vitamin B2 and l-carnitine
Carnitine used to work for me but now... not necessarily...

But I avoid vitamin B2 because it used to make me feel terrible... caused cluster headaches...

I wonder why that happened and despite the ridiculous theoretical progress that I made, I don't know...

The only thing that comes to my mind is that maybe after coQ10 supplementation this headache will not appear...