cfs since 1998
Senior Member
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Based on this small preliminary uncontrolled study of people with orthostatic hypotension (either due to multisystem atrophy or idiopathic), and a frequent finding of low CoQ10 levels in ME/CFS, I started CoQ10 in April. I started at 200mg, quickly increased to 400mg/day and later increased again to 900mg/day, divided into 3 doses.
I felt a small difference within a few weeks and a little more after about 3 months. However, I also restarted antivirals in May so I can't be 100% sure the improvement was due to CoQ10.
Lightheadedness and urge to sleep after sitting up for a few hours and after eating a large meal has been reduced. Number of presyncope episodes when standing up went from about 5-10 times a day to 2-3 times a day and episodes are less severe. Color has returned to face after being very pale, but it could be related to summer weather and warmer temperatures instead. Disorientation/dizziness/ataxia improved. Other symptoms that have not improved at all: neuropathy/numbness/tingling, Raynaud's in hands, blue fingernails, headaches, muscle pain/soreness/weakness, and general ME/CFS symptoms. I have not tested myself for PEM but might do so in a few more weeks.
I have continued doing more and more lab tests, all come back normal except my EBV EBNA IgG is missing. This is not well researched, but studies suggest it is missing in about 5% of EBV-infected healthy people and 10% of CFS patients, and a greater number of people suffering from immune suppression. Next lab test on the list is a skin biopsy for SFN.
I tried CoQ10 many years ago when my condition was milder and found it overstimulating and to cause insomnia. I have not had as much of a problem with that this time.
I felt a small difference within a few weeks and a little more after about 3 months. However, I also restarted antivirals in May so I can't be 100% sure the improvement was due to CoQ10.
Lightheadedness and urge to sleep after sitting up for a few hours and after eating a large meal has been reduced. Number of presyncope episodes when standing up went from about 5-10 times a day to 2-3 times a day and episodes are less severe. Color has returned to face after being very pale, but it could be related to summer weather and warmer temperatures instead. Disorientation/dizziness/ataxia improved. Other symptoms that have not improved at all: neuropathy/numbness/tingling, Raynaud's in hands, blue fingernails, headaches, muscle pain/soreness/weakness, and general ME/CFS symptoms. I have not tested myself for PEM but might do so in a few more weeks.
I have continued doing more and more lab tests, all come back normal except my EBV EBNA IgG is missing. This is not well researched, but studies suggest it is missing in about 5% of EBV-infected healthy people and 10% of CFS patients, and a greater number of people suffering from immune suppression. Next lab test on the list is a skin biopsy for SFN.
I tried CoQ10 many years ago when my condition was milder and found it overstimulating and to cause insomnia. I have not had as much of a problem with that this time.
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