Does it Help? – CoQ10

from personal experiences of persons afflicted with a variety of neurological illnesses
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Personally with CosQ10

Hi Aletta
I have been taking Co Q10 continuously since 1999 but with 1000mg vit C because I had a problem with vit E, which is now resolved and I take 600iu vitamin E with each 120mg CoQ10. For the last 3 years I have been taking 240mg before that I took 30 then 60 then 90 (2001).

If you want to understand Quinones Co Q10 being the one we make, look for papers by someone called Santos at the university of san Diego, particularly the ones about nematodes. also professor Clarke (she) is at the same university.

Whilst I don’t think any effect on ataxia, I am very convinced it is effective in halting the progress of cardiomyopathy, and although not a cure, I have had only 3 angina attacks since starting in 1999. Then again it was 1999 when I stopped smoking. (no coincidence since it was the cigarette money that paid for the q`10), but to go from at least one a month to one per
three years is not just quitting the weed…..

Also when you start q10 there is a fitness boost, and this could be part of why some studies claim ataxia improvements. Also Most of the improvement studies start in fall and end in spring. A fact not lost on me, as I always feel better in spring too.

The problem is that the recommended dose varies vastly between people. for example a ‘normal’ person is recommended 30mg and the same person on statins is recommended 240 mg.

These high doses for ataxias produce far higher levels of q10 than are needed for respiration and presumably address some other unknown need… However seeing as nobody seems to be able to prove any useful results, I, for one, can see no point in mortgaging my life to overkill, for a wing and a prayer. (BTW statins severely reduce coq10 production yet no-one seems to be advised to supplement for it…. why?)

I think 100mg is about the amount of coq10 But I have tried various levels and about 120 twice a day is plenty for me. when I was on 120 per day I only had one angina in 2004 when clearing a room and probably asking for it. so 240 for me is plenty and doesn’t keep me awake, as it does some people. (that was my last real pain, I get a twinge sometimes)

So take the ataxia claims with a dose of sodium chloride…..

B

I have always had to be very careful with recommended/prescribed medications as the side-effects are often worse than the sympton to be corrected. In the case of COQ10, a dose of over 100mg causes severe diahrea but recommended dosage to impact heart function is over 400mg.

S

It cost me a bunch, but I found no benefit and when I saw that neurologist he said he had yet to find someone who was helped by it, so not to waste my money. I had given it a lengthy try and was finding it a bit much to gain nothing.

P

Hi Aletta – I tried CoQ10 for about 3 months a few years back but found it made no difference so I stopped taking it.However, I know there was other members of BCAS who took it – one had said he didn’t know if it was helping but then he went off it for a couple of months and really noticed his energy levels, etc. going down. So, it’s hard to say if his body was becoming dependent on it or if it really was helping.

S

I took COQ10 for about 6 mths after being Dx with non-hereditary O.P.C.A.
Oct /2004. I didn’t notice any difference, or improvement.

K

D has been taking Coenzyme Q10 for the last few
months. He currently takes 800 mg/day, which is less than the 1200
mg/day some studies have reported as beneficial. We’re hoping,
actually, to titrate him up to 1200 mg/day—just haven’t gotten a
chance to do that yet.

D does feel that the CoQ10 gives him more energy—helps with that
devastating sense of fatigue he often feels. And, he does seem to
have gained more energy as we have increased the dosage for him.
It’s impossible to be certain, though, because we have made lots of
other medicine changes at the same time. And there certainly hasn’t
been a “night and day” effect so dramatic that we can be certain it’s
having a positive effect.

D

My husband was put on 300 mg. CoQ10 by one of the neurologists who saw him early on in his disease process. He was also put on 300 mg. of Alpha Lipoic Acid by this same neurologist at the University of Virginia Neurology Research Center. I honestly can’t say that either helped him any, although I guess it’s possible they did. The Chairman of Neurology at the University of Virginia Medical Center was my husband’s neurologist during the last three years of his life and told us he thought it wasn’t helping and was just costing a lot of money. I eventually stopped giving it to my husband when he had to have his feeding tube put in because it tended to clog up his tube.

J

My mother in law lives with me and she has been diag. with PSP for two years. Prior to that she was diag. with atypical PD. She read that CoQ10 would help. She purchased it every month for the first year of the PSP diag. It didn’t seem to help. Her doctor actually told her to stop taking it. Now she only takes OTC calcium.

M

My Husband was told he has P.S.P. In Aug. of 2006 at the Mayo Clinic, He was told to take 800 mg. Of COQ10 daily, it has been a blessing to us, at that time my husband age 65 couldn’t answer the phone, sometimes it was upside down, sometimes he just couldn’t remember who called, etc. Well to make a long story short, he can now answer the phone as well as he always did , yes he is slowing down a little in his movements, but it is wonderful to have clear thinking again, I hope this will be of some kind of help to you.

D

We’ve taken 1200mg of Q10 daily for a couple years, after reading of a trial that showed 1200mg was effective but no lesser dose. Best price we found was Puritan Pride brand, and best dose the big 400mg capsule, which is hard to get down with psp swallow problems. So we bite off the end of the capsule and squeeze the orange paste on a spoonful of food. A doctor said it should not lose effectiveness this way (some supplements are best left in the capsule so they digest in intestine and are not compromised by stomach acid). Q10 is tasteless and goes down easily this way.

Recently we heard 2400mg is a more beneficial dose, so we’ve doubled intake, 1200mg morn and 1200mg eve. Can we say it works? No medicine works with psp. So it’s enough if it stalls progression of the illness, buys time until a cure is found. I think CurePSP has given a grant to run a clinical trial on Q10. For us, a few trials already published are enough reason to take it—we don’t have time to wait for more proof. The big question with any supplement is whether it passes through the blood/brain barrier, actually gets from the mouth to neurons. Something else we’re looking at is the enzyme glutamate dehydrogenase. An inherited deficiency was found in some patients with OPCA.

The suggestion is that “Testing for the enzyme should be done in new cases of parkinsonism, particularly in those with atypical features.” (That’s us.) So far we’ve not been able to find anyone that will test for this enzyme. We’ve also been advised by an alternative m.d. to try this supplement cocktail: 400mg Mg chelate, 1000mg Vit. C, 300mg SK Alphalipoic acid, 400mg Vit E, 60-80mg gingko, and 500mg N-acetylcysteine twice a day on empty stomach. We’re slowly declining since 2004 diagnosis, but still eating, walking with assistance and talking. Trucking on.

E

The information on CoQ10 was one of those things I read through, but didn’t really understand. I ‘ve been so tied up with a Health Ins. Problem, but hopefully it’s been cleared up. At that time, I read it, but didn’t respond because I was so tied up with the Insurance. I didn’t save that info when it came through, but it sounded like a temporary fix for the brain cells affected. Not only has my husband been diagnosed with PSP, but we also have a 53 yr old son with CP. I wondered at the time if it would help someone like him…..

You have my permission to use my Initials or anything you want….You do so much for all of us!

C

My husband was diagnosed with MSA over a year ago. Doctors think he’s had this disease for 5-8 years. At one of the visits with his PCP who is also a holistic doc we chatted about the CoQ10. The doc put him on 125mg a day. He’d been on it almost a year when I first read about the clinical trial in Boston. We went to Boston and the first time he was turned down for the study because he was already on it. They later reconsidered him if he would stop taking the 125mg a day for at least two months.

Well, it’s now week 6 of the clinical study and I believe my husband is on the placebo. I’ve seen a big change in dementia. His dizzy spells seem more intense and don’t pass as quickly. I could be wrong as I know it takes 2-3 months for supplements to really be at 100% but this is just my impression of the progression. It could be just the normal progression (if there is one) of this disease. One thing I’ve noticed at this stage of the disease is that one symptom will ramp up and another will subside and vice versa.

Just my observation…

Take care.

B

K tried CoQ10 soon after dx in 2003. He felt that
there was no difference and has not tried it since.

L

My husband, David, who has MSA-Type C was on 1,200 mg of CoQ10 for several months last year by his doctor at Johns Hopkins. Not only was this very expensive but when he returned for his evaluation, the doctor stated that he did not really anticipate that there would be any significant benefit anyway. This seemed to be only something else to try enabling David to have some hope that his symptoms might improve. Another lesson learned !!

S

Yep, I’m a CoQ10 user (with FA). I began using it about 2 years ago cuz people were saying, “C’mon, it’s good stuff…try it!” Without researching, I tried 30mgs per day, didn’t notice anything, so quit when the pills were done.

Then someone told me, “30mgs is nothing! Take more!” So I bought 60 mg pills, and took 2 with vitamin E. The change was tiny, but noticeable. I was able to speak full sentences without needing to stop for another breath, but it wasn’t in a huge way.

So I ended up stopping for money’s sake, and my speech felt worse after 6 days without CoQ10. When family would ask me questions and lure me into conversations, I’d get impatient with myself. I’d have to repeat myself after almost every sentence.

I went back on CoQ10, and improved after 7 or 8 days. Then I found out that it assists in giving strength to the heart muscle, and it made sense.
Maybe it’s a placebo for me, but I do find an improvement, so I’ll stay on it. I’ve never met anyone else who can agree that it makes a difference, but try it if speech is exhausting to you at times.

And don’t buy from London Drugs or SaveOn, or other waste-of-money pharmacies. Costco sells a bottle of 100 gel caps, 150 mg. I take 1 pill a day, so I pay $26 for 3 months. I don’t feel it’s too expensive anymore.

G

My wife is on CoQ10 – 1200 mgs a day (600 am, 600 pm) which is the same protocol as the current study. With the study u had 50% chance of getting the placebo. With your drs. approval is on the dosage above. It is difficult to determine what effects it is having if any. No way for us to isolate it given other meds and things things she is doing (acupuncture, daily exercise, etc.).

B

The diarrhoea is a reaction to an improvement in heart function [i.e., circulation] and is usually suffered by people with advanced FA and ‘Carbohydrate Intolerance’ [which a DB2 diet should help]. But CoQ10 improves the energy and should be included in the list of things [like tea] not to be consumed in the evening. The improved circulation and antioxidant level also cause some small but kinda nice cosmetic side-effects […to which, I’m sure, Brine can attest ]

I buy my CoQ10 [300iu/day] and Vit. E [800iu/day] in bulk at the Costco Pharmacy in Richmond for 1/3 the retail price.

R

From the Lab Rat’s Desk – March 18, 2008

For the last little while I haven’t done much writing, emails or anything else. I am going through my bi-annual health decline. I am trying to do what I think might save me from declining in any permanent sense, so I am resting, drinking lots and resting some more. This year my eyesight and coordination are particularly affected, hence why I have rarely written anything more than a few words here and there.

Poor eyesight, and the general lack of coordination and exhaustion has led to my discovery of Facebook where I can keep in touch, in a very light sense, with people on-line. While doing so I have found a few old friends and relatives, and reconnecting (even ever so lightly) has been a thrill for me, without this health decline I never would have done so. Something good comes out of something bad.

I also discovered the fun of owning a virtual pet, my Fluff Penguin, and while posting a video to my Youtube (www.youtube.com/alettemes) site discovered that there is a Penguin named Aletta in the Zoo at Akron Ohio, so now my Fluff penguin has a lady in his life called Letty. (http://apps.facebook.com/fluff/art.php?id=534156066&pid=1204188015)

For anyone like me, when typing is immensely laborious, this kind of Facebook activity is only a matter of mouse clicks, and when I am very housebound it keeps me connected to what is after all a civilization to which I have a membership. On the best days I try to do some reading and researching into what ails me. I have been reading, thanks to a post on PSP Communications on Yahoogroups about Lithium and how it very well might be helpful in preserving brain cells – both their life and functioning – in persons with neurodegenerative illnesses. (http://www.life-enhancement.com/article_print.asp?ID=1675&type , http://www.springerlink.com/content/7557160745707740/) I have read enough at this point that on my next appointment I will ask my doctor for a trail run to see if I can still make some gains. I am feeling very hopeful; about it. I’d appreciate hearing from anyone who has tried lithium for off label (non bi-polar) uses. It looks so promising that I want to do this despite a previous experience with the stuff which had me on dialysis after my kidneys shut down due to toxic levels of the stuff.

Since I have had no energies at all for exercising I have instead made special effort in the areas of posture both sitting and walking/moving and I think that also is paying off, my headaches are less several at 6 pm than usual (now it hits me at 8). I’ve also kept up the dietary changes, the toasted flax seed and licorice, by no means am I regular but I have passed several obstructions and with much less bleeding than one would have expected, I am still far from caught up but I do think I am less toxic than before and will keep it up until I am. Bottom line is that I am fighting and fighting hard because I want my life back and I really think (probably denial but it works for me) that I can find a way if I just stay healthy as possible and keep hunting down an answer because it probably exists already I just haven’t found it yet. The lithium might not be it, or it might be or it might be part of it, I don’t know, but I do know I have to keep trying.

I do try to keep up reading the posts on my groups but on my worst days, to be honest I don’t because it saddens me so to hear of how others are suffering that it makes me more ill and I start to lose sight of the possibilities which I do need to hand on to. For those of you who think you are doomed, you may not be, we ( and doctors) just don’t know, fight, stay positive and keep looking for answers, and if I find one I will shout it out to everybody. Remember too that several people (in the case of MSA in particular) have already lived more than 40 years with the condition, and that means you can live to a normal life span, which in Canada is 80.4 years, though you will live it with a lot of nasty and nuisance symptoms which few will understand. Of course it doesn’t mean that if you were diagnosed at age 70 you will live to 110 – thought try anyway. It does mean for the early onset crowd, that lots of little remedies and a good attitude, and a smattering of good fortune can keep us going. It wasn’t all that long ago that AIDS was an absolute death sentence and now it is a chronic disease not a universally fatal one.

This is where life has taken me lately, I know I need to stay positive and when I go into my bi-annual period of decline and everything hurts more and functions less staying positive is very, very hard. When a few weeks ago a few lives were lost on some of my support groups and I just had to retreat awhile and look after myself, and deal with nuisances like my landlord which sucks the life out of me well enough.

Easter usually signals the beginning of me feeling better, probably the warmer weather and the generally more optimistic tone of life. I am thinking again of my balcony garden and I’ve taken lots of happy photos of family and tulips in the last week. I’ve even completed a photo edit of which I am particularly proud of the unknown soldier monument in downtown Vancouver. I’ve always loved that sculpture and I have tried to do the subject justice. It matters so much to keep busy, to have passions. If you can’t paint, click the shutter instead or learn to use the mouse to create wonderful images with.

It has been a while since I last posted and I very much wanted to make the effort before Easter which I hope will be truly wonderful for everyone. If all goes as I intend I should be back to my usual form fairly soon.

All the best

aletta