coq10 (apologies for the double post if you're also in the msaa group)

[BlanketTime1]

i had a mini genetic panel done a few months back. the results showed i'm a carrier for primary coq10 deficiency, which means it shouldn't affect me. however, when i take coq10, i sleep better, can actually lift my feet off the floor when walking for the first time in 6 years. my neuro got excited when he saw those results and told me to take coq10. i know it has anti-inflammatory benefits, but while i wait on my neuro appointment and the comprehensive genetics panel, i'm wondering: do any of you take coq10 and does it help your ataxia? if it does, do you know why?

[wobblybee]

🙂 Way back when I was first diagnosed with Cerebellar Ataxia, I tried CoQ10 for a short while..(I’m not diagnosed deficient)

Initially, I thought that it gave me energy…but I only took the minimal prescribed dose for a short time. I’d had a burst of energy but flagged afterwards.

More recently, I bought Ubiquinol, a more concentrated form of CoQ10..it’s said to have better absorption, particularly for post menopausal women.

🤔 I’ve seen posts from others about dosage..Some Neurologists advocate take exceedingly large amounts..but maybe these patients were deficient anyway 🤔

[BlanketTime1 in reply to wobblybee]

yes! he told me to take 2400mg a day. i planned to go up gradually. i started at 400mg and didn't sleep for 2 days.😐 i'm currently taking 100mg and oddly, i sleep better.

[Cuds]

Hi,

I take CoQ10 daily but have to purchase it myself now as it is being stopped by the clinic (money I think). The research trial I read says there was no difference between 400mg and 600mg per day...but if I drop to 400mg I notice the difference in my energy and coordination and if I stop completely I am rubbish! I think it all depends on the person and other lifestyle factors (things done to reduce oxidative stress). I also take CoQ10 because I take statins. My UK GP didn't agree with the research I presented him from Canada. They automatically prescribe coq10 to people on statins- its to do with the pathways being blocked...i.e. if you are on statins you need to up your CoQ10 to make it normal. I think there is a lot more research to be done on maintenance therapies whilst we wait for cures!

[BlanketTime1 in reply to Cuds]

interesting. i hate it when doctors dismiss us, as if they spend a fraction of the time we do actually looking into our illnesses and symptoms.

[PatsyIpswich]

About 10 years ago had it on prescription, quite strong and seemed to help in energy. This improved my coordination too but when I moved, it was no longer available on prescription so too expensive to continue. X

[BlanketTime1 in reply to PatsyIpswich]

it is really expensive. unfortunately, i bought varying strengths and i just have to eat the cost of the ones too high for me to use.