Controversial!: This is probably a controversial... - Ataxia UK

Ataxia UK

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Controversial!

penelope2 profile image
12 Replies

This is probably a controversial subject.But has anyone tried:

CBD

or GABA

or L-thianine

or anything that is a bit off the grid?

Maybe high dose supplements for the CNS?

And if so, how did you find it?

When you feel there is nothing to lose and weigh up the pros and cons of trying something a bit different, it is worth knowing what others have tried or considered.

Thank you.

12 Replies
wobblybee profile image
wobblybee

🙂 I’m not on prescribed medication..yet. But I have tried CBD Oil.

Most over the counter Oils are pretty low in content of CBD, although they are generally inexpensive.

I buy mine from an online supplier in the UK, and I’ve gradually built up to their maximum content of CBD. It is expensive but I needed something for pain relief, and it did help for quite a while. It’s possible I need to increase the once a day dose …

It’s generally known that Neurologists will prescribe Medicinal CBD to people with MS who need pain relief..but this doesn’t extend to Ataxia patients. Although..there can be exceptions, it depends whether the Neurologist is prepared to apply for special funding..I’ve read this in posts.

PatsyIpswich profile image
PatsyIpswich

My son bought some for me different types. They were all good for pain relief and anxiety.. I liked vase best but didn't help balance. X

Ostap profile image
Ostap

CBD - nothing!

Maxineto profile image
Maxineto in reply to Ostap

After my mastectomy, I had PAIN!! A friend suggested I try CBD oil that her friend made. I bought a small jar of a paste to put small amount on my tongue. Tastes awful. All it did was make me tired. Another friend brought me MJ seeds which I planted and grew and made my own CBD oil which I rubbed onto my skin. It killed the pain!!! I recommend using a light oil, put leaves in half filled jar and soak for a few days. Then use a piece of cotton to rub on your pain area, or you can use your hand. It worked.

marcet profile image
marcet

cbd nothing, l-Theanine nothing

7151 profile image
7151

I ve found CBD oil has helpedI get à good one from Spain

Happyfacexx profile image
Happyfacexx

I am applying all the eating regime and supplements suggested in the book called brain saver by the medical medium ( expensive book but cheaper on kindle) it’s a huge change in diet for most people… no coffee, dairy, corn , gluten, etc etc I used to have an awful restless feeling in my body which was especially bad at night (so was very hard to sleep)like a lactic acid buildup , that went within 2 or 3 weeks and I generally feel much better

coat2003 profile image
coat2003

Penelope2, i agree with you.. one disagreement everybody is different.Hard to say what works for who?and remember one thing cbd anything like it EASILY TURNED INTO AN EARNER.so i advocate CAUTION. yes try it all and see what works...

penelope2 profile image
penelope2

Thank you everyone who has replied. Sounds like CBD Oil has not been helpful to most so will probably give this a miss. Thought it would be helpful to me as an inhibitory, rather than excitory to the neurotransmitters in the cerebellum and so help stiffness? Which comes and goes several times during the day. I find that I move much smoother and more naturally when I am not stiff.

No one has mentioned GABA which can be bought over the counter in the US but not in the UK. This is a supplement and not sure why it is not sold here? L-theanine can be purchased here though so might give that a go.

Take care all

rideabike profile image
rideabike

I take L-Theanine but it doesn't help ataxia and is good for calm and sleep aid, also L-Tryptophan for sleep. I doubt if an amino acid would have any impact on ataxia stiffness. Have tried GABA but I think it's good for muscles when you've overdone it. Have not found it that helpful.

penelope2 profile image
penelope2 in reply to rideabike

That's interesting, thank you. I thought it might help neuronal antibodies that block inhibitors. I am willing to give anything a try.

Driven1 profile image
Driven1

 L-thianine is in every cup of tea you drink, enjoy

CBD is just marijuana

GABA is produced naturally in body to meet what it needs

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