Finally crying "Uncle" and trying CoQ10. Who is... - Ataxia UK

Ataxia UK
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Finally crying "Uncle" and trying CoQ10. Who is taking Ubiquinol?

So for years I have resisted taking Ubiquinol because I believed it was similar in how it theoretically worked to Niagen, and I am already taking a sizable amount of supplements, but this week I experienced unusual muscle tightness in my hamstrings that no amount of stretching seems to help so I am looking for something else (full disclosure - I also threw out my lower back so I'm hoping that is the real cause of stiffness). Either way this recent physical ailment brought me back to CoQ10 and it's more bio-available form, Ubiquinol. I see that 2 years ago I posted on the topic and several people said they were trying it including Litty and WobblyBee. Are any of you still taking it, and what have others experienced? There is a great deal of actual clinical research showing some efficacy for some patients with ataxia:

ncbi.nlm.nih.gov/pmc/articl...

Cheers,

Joe in NY

My alternative therapy for SCA1 - healthunlocked.com/ataxia-u...

My other posts on Health Unlocked - healthunlocked.com/user/sunvox

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I take 1,200 mg of Ubiquinol. I started at 900mg last year directed by my neurologist then stopped about 6 mos later because I was taking so many supplements. Then 2 months ago saw my neurologist and his #1 suggested supplement was high dose Ubiquinol. He suggested over 1000 mg so I started again. I don’t believe I will feel any difference but like most of what I take, I believe it’s working on the cellular level and will be beneficial in the long term.

Nami (in Texas)

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Fantastic input. Thank you so much. Would you mind sharing what other supplements you are currently taking? Also I remember you have SCA3, but I don't recall what symptoms you have so far. Would you mind sharing those as well??

Thanks either way,

Joe

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Sure. I am still in the early stages. Mild imbalance, unable to walk heel-to-toe consistently, able to balance on one foot for about 5 secs. Most people that don’t know I have SCA can’t tell. I still work full time as a medical device rep in cardiac surgery.

The supplements I take are:

Ubiquinol 1200 mg

Niagen 600 mg

B Activ 1 capsule

D3 10,000 IU

E 400 IU

Resveratrol 1000 mg

Pterostilbene 150mg

Trehalose 2Tbs

Curcumin 750mg

B12 injections

CBD oil

Testosterone pellet 100mg every 3 months.

I try to do Pilates 3 times a week and core exercises. I travel for my job so Pilates twice a week is more realistic. I also have a Joovv light I try to sit in front of 2-3 times a week.

Nami

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Hi Joe,

I have taken 400mg of CoQ10 for the past 5 years (consistently) on and off before this. I recently changed to ubiquinol but have not notived any difference. Discussed this with neurology at a recent visit and they dont think the active form makes a difference...its just more expensive! He is going to get my CoQ10 delivered to me and put me on a higher dose. I do notice a difference if I stop using these. I also take vit E 400iu and vit D3 1000iu. I also notice a difference when I focus on my diet and eat good foods. Maintaining a healthy gut impacts on my general energy, in a good way and I make my own anti-oxidant smoties daily.

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Dear Joe, I have ataxia due to Niemann Pick C (NPC) disease. I was diagnosed at 49 years of age with Sporadic Cerebellar Ataxia (unknown cause), although I had extremely minor symptoms starting at 43 years of age. Over the years I had genetic testing for the more common dominant & recessive ataxia's, which was negative. I'm 65 now and in 2017, through genetic exome testing, a single NPC gene was found. Therefore, I had a skin biopsy, followed by a blood test. It was positive for NPC disease. It was determined that I not only have a single NPC gene, but an unknown variant as well. NPC is extremely rare, especially late/adult on-set. So far, I just have ataxia due to NPC, no other health concerns. Anyway, I taken 300 mg per day of CoQ10 (my neurologist would like me to take 600 mgs, but I never have). I think it gives me a bit more energy, beyond that I haven't noticed any difference, as my ataxia has progressed over the years and will continue to do so! I also take 1000 mgs of B-3, 100 mgs of Vitamin D, 2-1200 mg caps of fish oil & a Multi-Vitamin. My ataxia effects my gait/balance (I use a quad-cane or rollator outside my home, but can usually walk extremely carefully in my home without any aides), dexterity (writing/printing/fine motor skills), speech (slurred), swallowing (coughing & sometimes choking) and vision (vertical gaze/focus). My best to you..., ;o)

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I've taken Coq10 & more recently Ubiquinol form since 2009 (following a study I was involved with, which determined that 'some' ataxias may benefit). My ataxia isnt determined as yet (genetic though), so I thought it might help & believe it has. I take other supplements such as vit d3, fish oil etc as well as eating broccoli, nuts, prunes (which i discovered 'may' help arthritis) & seeds etc - Not advised by neualrologist but i do a lot of research & discovered the best for me personally. It is common knowledge & advised that anyone taking statins should take Coq10.

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Are you going to try PQQ with it?

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Morning R- I stopped taking PQQ about 8 months ago when Simon from Science of Parkinson's pointed me to research showing that PQQ can not cross the BBB.

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But now you got me looking over the research again, and this trial jumped out at me as proof that PQQ has potential benefits: functionalfoodscenter.net/f...

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And now I see this: lifeextension.com/Vitamins-...

Very interesting. I should note another fact that ALL Ubiquinol is made by one company, Kaneka. So whether I buy Qunol or the Life Extension product combining Ubiquinol and PQQ the Ubiquinol is the same product from Kaneka. The difference as I understand it is in the additives which are there to support absoption, but from what I have read simply eating a few almonds has similar effect.

Really a shame how murky and complicated this all can get.

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Almonds? *sigh* I recently gave up almonds as I have been trying a low oxalate diet after what I think was a kidney stone (some sharp flank pain and dull flank pain on one side). I realized I had been consuming ~ 2 g of oxalate per day - beet chips, berry and spinach smoothies, baked sweet potato with almond butter for breakfast, etc. I noticed my joint pain and stiffness went away - so I think there is something to the oxalate theory of fibromyalgia/connective tissue disorders (I had previously dismissed the theory). I miss having sweet potatoes and almond butter for breakfast.

~

PQQ ups PGC-1alpha, which is a circadian rhythm regulator; the liver and pancreas have clock functions in addition to the pineal gland, so even if it does not cross the BBB it could help with circadian rhythm entrainment. Unfortunately PQQ did not help my sleep (or maybe I would be even worse if I did not take it?). It does seem to improve my exercise tolerance and my nail beds look more pink, so I think it helps with microcirculation. Many people report improvement in peripheral neuropathy on PQQ, so it seems to help with the peripheral nervous system.

I'm trying lactoferrin for sleep now; it's an experiment (yet another one... ):

healthunlocked.com/sleep-ma...

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Hi Joe,

hope you are well.

I upgraded to Ubiquinol approx 3 years ago after I read about the limitations of the conversion of CoQ10 in people over a certain age. I did notice an improvement in energy levels after I had been taking Ubiquinol for a period of time. But, stupidly, due to the relatively high cost of Ubiquinol this product compared to CoQ10, I moved back to taking CoQ10 approx 6 months ago.

Within 3 months I noticed a positive difference in my finances but a negative effect on my energy levels! So I am now back on Ubiquinol! My current intake is 300mg per day (100% pure Kaneka Ubiquinol) . My energy levels have definitely improved although there is no doubt still room for further improvement....especially late afternoon/evening and I am considering whether to try a higher daily dose.

Hope this helps.

Tony

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Hi Tony,

Your input and dry wit are always much appreciated :)

Too funny about the finances. I am constantly going back and forth in my mind on cutting this or that supplement to save money. It's nice to hear someone else put into words what I keep trying to tell myself: don't mess with it if it's working. I do worry though that my list of supplements is becoming too long so now with the addition of Ubiquinol I think I will take out Baicalein (Chinese Skullcap).

Funny I was just looking back at my earliest posts on the discussion of trehalose and reading your early reports. Looking over your replies here, it's clear you figured out long ago that a few simple items combined with a healthy lifestyle can make all the difference. I also read your post about switching to cycling as your balance fell off. I'll have to keep that in mind as the years move along.

Anyways thanks for sharing your experience with Ubiquinol.

Joe

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Hi Sunvox, can CoQ10 help with the dizziness or loss of balance? if so what strength do you recommend I buy.

stjamesangel

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Hi- I'm not a doctor, but as many folks here have responded with a positive review of their experience with CoQ10 and there is an actual clinical trial that showed some benefit, it seems possible it might help with dizziness and balance. As to a dosage, I would refer you to a doctor for that question, but I would note that the recommended dose on the bottle is 100 mg daily and people posting above are taking anywhere between 100 and 1000 mg per day. I am starting myself at 300 mg per day. Joe :)

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Ask for baclofen for the stiffness👍

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you probably saw this but FYI...……….

greenmedinfo.com/blog/one-f...

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thought you may be interested in these studies if you aren't already familiar ………………………….

from MitoQ:

" I have also listed a few studies below regarding MitoQ and Parkinson that you may find helpful."

- The mitochondria-targeted anti-oxidant MitoQ reduces aspects of mitochondrial fission in the 6-OHDA cell model of Parkinson's disease. Solesio ME et al. Biochim Biophys Acta. 2013 Jan;1832(1):174-82. DOI: 10.1016/j.bbadis.2012.07.009

- A double-blind, placebo-controlled study to assess the mitochondria-targeted antioxidant MitoQ as a disease-modifying therapy in Parkinson's disease.

Snow BJ et al. Mov Disord. 2010 Aug 15; 25(11):1670-4. DOI: 10.1002/mds.23148

- The mitochondria-targeted antioxidant MitoQ prevents loss of spatial memory retention and early neuropathology in a transgenic mouse model of Alzheimer’s disease.

McManus MJ et al. J Neurosci. 2011 Nov 2; 31(44): 15703–15715. DOI: 10.1523/JNEUROSCI.0552-11.2011

ncbi.nlm.nih.gov/pubmed/205...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/228...

ncbi.nlm.nih.gov/pmc/articl...

I hope that this information is useful, however should you have any other questions about this in the meantime please be sure to get in contact with us. We are always happy to help.

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I take ubiquinol "Qunol" and have for some time. I get it with a $5.00 of cupon at a wholesale club. Honestly I don't know if it does anything but waste my money. I have read that normally one needs a pretty high dose to be effective. I take 1 capsule a day, but maybe that is not sufficient. I take it for prophylactic reasons, but it is rather expensive.

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There is also Ubiquinone which I think is a precursor to ubiquinol. I'm not sure about the specifics, but sometimes I screw up and get that instead. Since the name Quinol ends in an L and I sometimes forget which one I want don't read the box carefully.

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