CoQ10 (ubiquinone).

[Iain_100]

This is a question for Harriett (or anyone else who knows).

I've just come across an article, that suggests that a CoQ10 deficiency has been identified in SCA cases where no genetic cause has been identified (me).

As far as I know, my CoQ10 levels were not tested (but they might have been).

dailyusa.pw/vitamin-treatme...

The treatment would appear to be no more than taking a supplement of CoQ10.

It does sound like it only helps in early-onset SCA though (not the late-onset flavour that I've got).

My problem is that I am in the south of France at the moment, and just about to head into Spain. Therefore, there is no way I can see my own GP and have my CoQ10 levels tested.

However, the Spanish are very lax about over-the-counter drugs (even ones that are prescription-only in the UK). So I see no problem getting hold of what is essentially a vitamin supplement.

So my idea is to self-medicate with CoQ10 supplements. Is this safe? I've checked, and 2400mg/day seems to be the recommended dose.

You can't overdose on CoQ10 supplements? I'd hate to be strung out on the stuff

From where I'm looking, it seems like there is no downside to trying.

Thanks,

Iain

[Haddav]

Something to try, definitely.

[neta]

Dear Iain_100.

For your information Co Q10 is not a prescription drug in the USA. At least it never was. Good luck.

[sheild]

Co enzyme q 10 is classed as a supplement and as such, in the UK, is not prescribeable by a GP although one or two hospitals will. It is however readily available form websites, I use simplysupplements.co.uk who may well ship to you.

The maximum dose should be 1200 or 1400mg daily, but that would be for the medical grade stuff. I find I need 4200mg of the simply Supplements brand. Start up slowly with dosage and you will know if you overdo it when you get the runs, that seems to be the easiest sign to check for.

I have Mitochondrial Disease with some kind of ataxia (still being investigated) and find co enzyme q10 helps with the porridgy heavy legs feeling and I can tell if I miss a couple of doses.

The other supplement that might help are the omega 3 6 9 oil capsules.

There was an article floating around the Mitochondrial group linking Mito with ataxia if there is research going on into this link then it may be that many ataxians might benefit from co enzyme q10.

Just be aware that some cheaper brands of co enzyme q 10 are not very good quality.

[notrunning in reply to sheild]

I'm being investigated for this too, in Ireland..good luck!

[Brommie]

I have been taking a 600mg supplement daily for several years and think that it helps my energy levels. I can honestly say that I have never had any side effects. The brand that I use is Doctors Best, I have tried cheaper brands but these don't seem to be as effective. My Neurologist is aware and quite happy that I take the supplement. Apparently it is prescribed for people with Freidricks Ataxia by the NHS but not other forms of Ataxia. Hope this helps.

[Ginger1]

I did a COAP (Care of Ataxia Patients) study in 2009 via Ataxia UK and Co Q10 was recommeded. Research was being carried out and COQ10 was thought to help ataxia. I currently take a supplement (i use Innopure bought through Amazon as it seems through my research that it is pure/natural).

Just to advise, I take Vitamin B Complex (not Complete as Complex is meant to be better) also, as Vitamin B is meant to help too. I would stresss though that some medicines can interract, so just check that first, as I don't know what medicines you're currently taking. I'm no expert.

Good luck.

[notrunning in reply to Ginger1]

Thanks for the advice. ..does it work,

[Ginger1 in reply to notrunning]

It seems to. Fatigue doesn't seem as bad. Coq10 provides energy to cells.

I also drink effervescent vitamin c & zinc, as vitamin c is also meant to help tiredness. I'll try anything. I realise everyone is different to though .

My neurologists are aware.

[glenandgerry in reply to Ginger1]

Hi Ginger1 as part of the many supplements I give my husband for Parkinson's (although I think he may actually have Ataxia as his trunk and thigh muscles just don't support him at all) is Life Extension Complete B-Complex which is a bit strange as it would seem to be both Complete and Complex? although you say Complex is meant to be better......why is that, do you know?

[Ginger1 in reply to glenandgerry]

I do a lot of research & according to what I've read (i dont believe everything!) complex is better. it must contain more i guess? Parkinsonism is very like ataxia I think. Ataxia is a symptom often of another illness I believe, so ur hubby cud have both maybe? X

[glenandgerry in reply to Ginger1]

Thanks Ginger1 I also do a lot of research.....this week my head has been swimming with everything I've discovered.....too much to take in but it's the weekend now so time to take a break!

[jneilw51]

Hi, Lain. I looked at the article that you addressed in your comment. It states:

"for one form of the rare disorder hereditary ataxia".

I do believe that hereditary ataxia is the type of ataxia which HAS genetic causes. You might want to check that out, and let me know if I'm wrong.

Jim

[Iain_100 in reply to jneilw51]

Hi Jim,

It's a very baffling article. It also goes on to state: "hereditary ataxia with no known genetic cause" (so if there is no known genetic cause, how do they know it's hereditary?).

From the article, I just took it that they were referring to ataxia commonly as "hereditary ataxia" - whether it was hereditary or not.

Iain

[jneilw51 in reply to Iain_100]

It was confusing to me, too Lain. I just figured that they would not refer to it as hereditery if it actually might not be hereditery. Scientists tend to be pretty specific about the terms that they use. The only thing that I can figure is that they may be able to call it heredetary simply if it seems to run in a certain family, but they may not know how exactly what gene causes the specific symptoms. That would be true particularly if many genes are involved in producing one form of ataxia. As I understand non-hereditary ataxia, it is usually caused by chemicals, like alcohol or agent orange. Where a part of the brain has been destroyed by chemicals, they probably would find no ataxia-related genes, so they could definately rule-out those cases as being inherited ataxia. If you ever have a doctor explain it better to you, maybe make note of it here because i would also be interested in knowing how hereditary ataxia can have no known genetic cause.

Jim

[Iain_100 in reply to jneilw51]

For sure Jim. Yes, when there is enough confusion to start with, it doesn't help when articles refer to ataxia in an even more confusing way.

Iain

[LOVELY_1]

I have C.A. with the Cq10 deficiency. The mutant gene I have got was indentified May 2015 in research. Up to then my C.A. was of unknown cause and a deficiency in C.A. is very rare.

There are only ten in England according to my neurologist at the Ataxia clinic in Queens Sq. London. Thats where she prescribes the Cq10

So since May she put me on 600mg a day (I am 68 years My symptoms have improved but be careful the side effects can be diarrhoea and sickness) if you start too high. There is also possible interactions with other medications so to be tested and treated by a doctor is advisable.

When I first started taking them the hospital gave me a cheaper make but then the hospital got a better make and I diffinately noticed a difference.

[LOVELY_1]

I forgot to say have a look at

heartspring.net/neurologica...

[Doralouise77]

First off I do not have ataxia but the post caught my eye. Here in Canada we can buy it OTC. I have been taking Life Extension brand (a very high quality one) 100 mg daily for several years as recommended by my Naturopath to help increase my energy level. I wanted to also say that it is necessary if you're on statins because they destroy the CoQ10 in your heart muscle. Some doctors who order statins remember to order CoQ10 as well but unfortunately some forget.

Cheers

[Litty]

I found a very good website to check supplements on

mskcc.org/cancer-care/treat...

obviously be very careful if you take anything.

Not sure anything really works but this is what I take.

Years ago I helped at a research thing and they suggested taking CoQ10. I discovered the purer form of Ubiquinol is supposed to be better?

Opti 3 - A vegetarian omega-3 EPA and DHA.

Organic turmeric for cramp.

Tablytes (electrolytes) for cramp

Lycopene.

Like I say not sure anything really helps but at least you feel like you are doing something!