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Ataxia Support Network

Supplements for cerebellar ataxia


#1

I was diagnosed with ataxia after a car accident in '16. I also have polyneuropathy. I take gabapentin for pain and tremors, but my gait and speech continue to worsen. I went from cane, to 2 wheel walker, to 4 wheel walker within a month. So frustrating, I rarely go in public. When I do, I wear one of my t-shirts that says “I’m not drunk, I have a rare neurological disease ATAXIA…ataxia.org”. I was getting tired of getting harrassed. Most people want to help, but I have had some bad run ins.
Anyway, below is a partial list of what I take daily. Honestly, as my condition worsens, I often question if its worth it. My blood tests showed I wasn’t vitamin deficient, yet I still take some 50 pills/day. Has anyone benefitted from anything below? Anything working for you? Trying to be positive, as much as I can :slight_smile:

Prescription

  • Gabapentin ■■■■/day

supplements:

  • Thiamine 1000/day - shots and pills
  • Folic Acid 1000/day
  • B 12 - shots 1/week
  • C
  • D3
  • E
  • Fish oil
  • Biotin
  • Tumeric
  • Alpha Lipoic Acid
  • L –Carnitine
  • CoQ10
  • Magnesium
  • Indian herbs, Causticum and others
  • Nerve renew
  • Calm
  • ACV

#2

Why can’t you combine most of this into one or two prenatal vitamins a day? Reading your list it reads like the back of a prenatal vitamin jar.

azurelle


#3

I take 2X 450mg of Turmeric/day + 5-6 peppercorns usually when I wake up.
I find it helps settle my stomach. I have MSA which comes with poor digestion as a symptom. Turmeric says it also relieves muscle and joint stiffness and cramps/pain. I think the digestive system benefits are really just a bonus effect. I tried CoQ10 for a while, but found it gave no noticeable benefit? I understand there are currently some trials being conducted on this one. Squalamine (derived from shark liver) 3X 100mg/day 2X/day gave no benefit either. From reading, I understand Squalamine studies where or are currently being conducted using a different form of the drug.
Currently my family physician and I are trying an anti-biotic called Doxycycline which was a chance discovery in Brazil. Originally found in a Parkinson’s trial, MSA and Parkinson’s are said to be closely related. I figured what the heck! I have nothing to lose at this point and my family dr. agreed.
As with most forms of ataxias, there is no cure (yet). Therefore, I see no loss in trying cheap supplements/remedies to at least relieve the symptoms. All under the supervision of my dr.(s) of course.The key is, I find, not to waste great amounts of cash on big ideas that may or may not work! Research the heck out of it as best you can, always be skeptical, and always consult with your physician.
If you do stumble on something that has some positive effect please share.
Thank you for posting this list.


#4

Coconut oil capsules taken two twice a day has helped me and my sister a little bit.


#5

good sugestion, although I’m pretty sure I’m not prego :slight_smile: . I have added more supplements, as I try for a solution. Keep in mind, many are sublingual or shots to ensure it by passes my GI tract. just staeting to feel it’s a waste of time and $


#6

I will try. I cook w/ coconut oil, but will try capsules. Thx


#7

thx for reply. Like all, just struggling for a “magic bullet”


#8

I’m 72 and new to this site. Have had hereditary cerebellar ataxia since I was 67. No supplements work for me and my walking has been getting worse every year or more frequent. I would like to know if there are any legitimate stem cell treatments or where I could find a good summary of this issue. Is turmeric with tea of any help to anyone?


#9

I’ve reached at this company’s San Diego office, but no response. They have stem cell for Ataxia.http://www.steminent.com/clinical-programs/


#10

Gabapentin appears to be an off label prescription. It is used to relieve pain and seizures however one on the side effects can be loss of balance and co-ordination. I would review this with your physician who may be able to prescribe a more appropriate drug ito deal with pain and tremours.

Supplements may or may not help depending upon individual response. If they don’t show improvement over a reasonable period you might consider discontinuing them. Normally the body will manufacture all of your daily requirements if you have a reasonable diet. As far as I am aware B12 and vitamin E are the only vitamins where deficiency may adversely affect Ataxia and a simple blood test can tell if you are deficient in either one.

The one thing that has worked consistently for me is strenuous exercise including cardio and weightlifting. They have likely prevented my Ataxia from progressing over the past 3 years. My neurologist is baffled. I do need a walker to stay balanced when walking and have to use machines rather than free weights. I am also able to play golf walking the course with a push cart that acts as a walker. I am lucky to be able to do so much. I believe strongly that anyone with Ataxia would be wise to exercise regularly within their limits of capability.

I get many offers of unnecessary assistance which I politely decline. I am lucky that I don’t give a rat’s ass about what people think and in any case their intentions are usually good.

I wish you well with your ongoing struggle; only those with Ataxia can really understand it.


#11

I have also tried to contact them without success. I talked to my neurologist at Johns Hopkins about it. She has not heard about any recruitment in the USA yet.


#12

Hi Zillet, I am in UK and 75 years old so get my prescribed medications free. Recently I had problems with itchy rash on arms and legs so stopped all my meds to see if I had developed a reaction.
Not the case but found I was fine without most of them apart from Omeprozele which stops me getting acid reflux and other related pains.
I also take prescribed pregagabin twice a day.
I do supplement with multi vitamin and mineral pill every other day and daily tables of calcium, magnesium, vit c and multi B plus CoQ10 and flaxseed capsules
At the moment I am taking CBD oil [hemp oil] 3 drops under the tongue twice a day and this has energised me. I havent had any muscle pain, spasm etc just a little rigidity when cold.
My son gave it to me to try so havent had to buyi it but believe it is expensive.


#13

Hi Patsy,

you’ve taken cbd oil from my mouth…it is expensive, esp. from Forever living products…only a few ml, but dear, but I believe should help, at least try it. For nerves, strengthening, any neurologist would recommend B12, or B3. B6…Injections b12, are fab, or tablets of b6 or b3.

make sure you don’t mix much, common sense tells me, can clash…q10 good for brain function, Gilko Biloba the same.Rather than a complete goulash of pills focus on painkiller, cbd oil and B12, or individual Bs.

My ataxia (very early stages of inherited condition) sca2, not acquired like yours by car crash, but there had to be something…the crash just sped it up…I experience inner tremors NOT VISIBLE, plenty of exercise, avoiding going stiff, cold weather…BUT NO MEDS. I HAVE NO PAIN…and the rest just supportive help…regular walks using a 4wheel walker, no balance…


#14

My ataxia not from car crash… that was the member I was replying to, Zillet but thanks for response.
My ataxia is of no known cause although may have been from premature birth.
My mother walked like me but she had rheumatoid arthritis and fatally overdosed with sleeping pills at the age of 57 so I dont know if she had ataxia. I have a brother, sister, son and grandchildren and hopefully none of them have ataxia.


#15

Thx for feedback. I started w/ B1 and B12 self injections, and folic acid pills. The rest I slowly added when I got zero results. The gabapentin helps with “pins and needle” pain, but I fear it may make my balance worse. I’ve recently started “vaping” w/ cannabis oil, which helps my tremors. Is CBD the same as MTC coconut oil? I take a shot per day, as I’m now trying the Keto diet. There has to be a solution…


#16

Thanks for encouragement. Yes, exercise is key. I can’t walk, but can ride a bike, believe it or not. I do 20+ miles/day, but have had many crashes when starting and stopping. I fear I will be on a stationary bike soon. If I don’t exercise, my legs atrophy, and its all downhill. I pray every night that I will walk again, but wake up in pain, and in a wheelchair. But, I’m resilient, and will beat this.


#17

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Patsy

    August 9

My ataxia not from car crash… that was the member I was replying to, Zillet but thanks for response.

My ataxia is of no known cause although may have been from premature birth.

My mother walked like me but she had rheumatoid arthritis and fatally overdosed with sleeping pills at the age of 57 so I dont know if she had ataxia. I have a brother, sister, son and grandchildren and hopefully none of them have ataxia.


#18

the diet lost 6,5kg and bp improved immensly. Sugar as well.
all I know cbd oil doesnt contain the chemical causing marijuana users, being stoned. Here in Britain, lately many cases of kids having seizures…and cbd oil legalised for their needs, as greatly reduced…Here in Britain, Holland & Barret sells it, but VERY WEAK extract, cheap…I’d rather opt for dearer, but working…

My grandpa (maternal) suffered from Parkinson…(so, once I am in a state of tremors, will definitely try it)

Goood luck!


#19

You should try a tadpole trike. It has two smaller Wheels in front and a 26-inch wheel in the rear. You sit in it like a chair recumbent with your feet out the front. No balance required and it really goes like a bike. Check out the Hostel Shoppe in Stevens Point Wisconsin website


#20

Looks cool, although I don’t think I would be comfortable being that low with car traffic. I see some have flags, but still would be a bit freaked out by cars not seeing me. I may just get a regular trike to ensure no more crashes, as my balance is worsening.