Since I've been on here, I've been reading about people taking 'drugs' for hereditary ataxias (off the top of my head: cq10 and vitamin E). I'd never heard of anything like this before - I'd never done any research into it and relied on my neurologist to tell me anything, which he didn't. So I'm wondering whether any of these medications are worth taking, and did your neurologist/doctor recommend them? Oh, and are there any side effects?
I have Friedreich's Ataxia by the way, in case it makes a difference.
Hi, I have a daughter with a hereditary SCA and we were advised to use Co-enzyme Q10 years ago as it apparently can help to reduce the atrophy of the Cerebellum and her condition has progressed slower than we first feared so I do believe it is helping. It is beneficial in many other ways. Go to google scholar and search co-enzyme for SCA to find out more.
Hello I have CA hereditary. My consultant in London said I can take them but there is no medical evidence that they do work. To be honest if I take anymore medicine I will rattle when I walk ! But we are all different it may work for you. Good luck Wendy
Hi, my name is Elle. I have undiagnosed ataxia and I have been using co-q 10 and vitamin E. They have helped slow the progression I think. My neurologist suggested I take them. I do not have your ataxia and I am not a doctor so I can't recommend them for you. Good luck in your relief.
Given the positive replies, and even a placebo effect may show promise! I dont think these vitamins and nutrients have any adverse bio-accumulative effect.
As far as understand it, you need to consult a neurologist who specialises in ataxia for advice on drug treatment.
Co-Q10 is recommended. It is produced by the body and can be depleted by such things as statins. Some people benefit from supplements but I think a muscle biopsy is required.
Baclofen is a muscle relaxant and helps with rigidity and vitamin E an antioxidant that will help anyone.
I take B-complex, magnesium, multi vit/mins and vitamin C too. I consider it an insurance policy. You need to know your body really. I read about vit/min supplements when I turned 40 years. I was diagnosed with CA at 59 years and like to think that it is still fairly mild at 70 years. Who knows.. we can but try.
CQ10 and vitaminE are only a few of the neurologists suggestions for me. I have no idea if these vitamins are working or not. As I understand it, vitamins & supplements don't make you feel better or differant--they just help your body work more efficiantly. (sp)
Your neurologist must have a reason why they are not suggesting these vitamins. I think you should discuss this with him or her.
Since you have Friedrich's Ataxia, you could also try Vitamin B3. It's only in the early testing stages right now.
The authors note that "it should be stressed that further assessment of the safety and tolerability of nicotinamide need to be done before it can be given to patients with FRDA." However, they also note that "From a therapeutic point of view, nicotinamide ...has been used in various therapeutic applications over the past 40 years and has a good safety profile". If I had Friedrich's, I'd be taking it now and waiting for the evidence later.
Based on the review referenced in the paper, I'd go for a dose of no more than 3g/day - less if you've got a smaller body mass (e.g. female, low body weight or below average height). Doses above that can be bad for your liver, though the problem goes away if you stop taking it.
Also, you want nicotinamide rather than nicotinic acid (if you're looking on the side of vitamin bottles).
P.S. All the usual caveats - I am not a medical doctor, speak to your neurologist first, etc., etc.
I find this all pretty confusing too. I have what is believed to be auto-immune induced CA and have undergone treatment with IVIg. Whenever I discussed/discuss the efficacy of taking vitamins with my neuros, they say, "dont waste your money." I'd like to know what's going on. Are they effective or not.
There are a few difficulties in answering your question:
1. For any medication there's no perfect answer to "are they effective or not". Everyone's different. What works for some people doesn't work for other people; what causes side effects in some people doesn't in others. So a treatment which fails clinical testing, because it doesn't meet statistical significance requirements over the full set of treated patients, may still work for a very small percentage of people; and a treatment that is effective for most people may not work for some.
2. The efficacy of placebo (null treatment) is poorly understood. For lots of people, if they think a treatment is going to help, it does, even if there's no medical reason for it to work.
The combination of 1 & 2 means that you can't rely on glowing reviews of some particular treatment from friends or people online as evidence that that treatment will work for you.
3. Clinical testing costs money. Most clinical testing is done by pharmaceutical companies. Pharmaceutical companies don't bother testing drugs they can't licence, because they can't make a profit off them. Therefore, tests for the efficacy of vitamin supplements are usually done by public or charity-funded academics, and there's less of such testing done. The question of whether vitamins are effective or not for a range of conditions therefore takes time. Ataxia in general is such a rare disease that it's not usually top of the funding list for public money, and sub-types of ataxia are rarer still.
4. As mentioned above for the Vitamin B3 treatment for Freidrich's Ataxia, there are genetic and symptomatic differences between ataxias. What works for one sort isn't necessarily going to work for another. So some vitamin treatment may be effective for some ataxias, but it may not necessarily be effective for your particular ataxia.
I know that's all very unsatisfactory. For some conditions it's possible, with the help of a friend, to do a double-blind test on yourself, but with a long-term condition and long-term treatments that doesn't really work. The best I can suggest is continuing to be your own advocate and reading up the medical literature on your condition - see if there's a local medical library that may give you access to electronic journals.
Thanks to everyone who's replied (so far!), the replies are really helpful. I'm surprised by how common taking supplements seems to be - how did I miss this? I think I'm going to scour Google Scholar tomorrow. Fun.
I can so relate to what you say Neta. Anytime I ever mentioned any potential treatments etc to my neurologist, the ideas were shot to pieces. In a rude/blunt way. I stopped asking him anything pretty quickly, and I don't see him anymore.
Thanks Lute. I have read about vitamin B3 before - sometimes I look at the clinical trials going on at the moment. I guess I always just assumed that to be helpful, you’d have to take huge amounts of the vitamin - it never occurred to me that taking a daily dose of the vitamin might help. Evidently I never read too much into it. I also thought that if it could be helpful my neurologist would’ve mentioned it, but I don’t think that was his style!
I guess my next step is to find a new (and hopefully nicer) neurologist and ask him/her about it. If I take any of the vitamins, I wouldn’t know what dosage to take, and I really don’t want liver problems on top of everything else!
I kinda did the same research years ago and gave up on it.
Becoming fully engaged with living and relationships gives me no time to think about meds or cures. Sure I am unstable and fall over sometimes but I have just get on with it. No use crying over spilt milk.
I think different medication work differently for different people. I've been taking CoQ10 and energy supplements for years (that was before I was diagnosed with FA), to no avail, I'm still tired. Now that I know I have FA, I just exercise more for my co-ordination (legs and hands), despite the tiredness feeling. Good luck to all. We can fight it!
I take 600 mg of CoQ10 (300 mg 2 x daily) per my neurologist. Although I don't have Friedreich's Ataxia, and my ataxia is supposedly non-hereditary, I believe the CoQ10 helps me, (I think it's slowed the progression. I also take Vitamin B12 (1000 mg daily), fish oil (2), flax seed oil (1) and a multi-vitamin each day. I plan to talk with my neurologist about taking Vitamin E and Vitamin B-1. From what I understand, antioxidants are good for ataxia, as well as general health Of course, never take anything without taking with your doctor first..., ;o)
There seems to big gap between what is said here (vitamins, no or little testing) and what is said in the neuro's office (no vitamins) and officialdom (testing up the wazoo). Who to believe? Can someone from NAF weigh in? Willow, thanks.
I do this and awake feeling anxious and wishing that I didn't fall asleep. I dont shake,as in have tremors, but my head spins when I am totally upright. But my grandma (who lived happily till 95,) said rest and sleep were very important to one's health.
fahareen said:
I have found not a cure but a real help, you must nap at least one hour a day which reduces your shaking