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Ataxia Support Network

Coconut oil...cure?


#1

I just found out coconut oil is really good for brain disabilities. People have used it for Parkinsons ALS and other dysfunctions. Maybe it can work for ataxia? I just started taking it today taking 2 to 3 teaspoons a day. I will post results. Has anyone tried this or heard anything about it?


#2

I’ve read it’s used by people with Gluten Ataxia😊xB


#3

Yes, I’ve heard (read) the same, although I’ve never tried it. Yes, please, let us know how it works for you. ;o)


#4

I never heard that before, but you never know what can help. If it helped Delo23, I’ll try it.


#5

Well I only made it a week before i got sick of it. It was easy to give up on it though because i found something else. Pills called protandim. I am waiting for my order to get to me. Its essentially a supplement but i heard good things about it. I will post results.


#6

I think it helps me. I’ve got a hereditary ataxia the doctors are calling Type 30. My neurologist told me that there was nothing I could do to help with my fatigue or degeneration. He also said that if I’d had a stroke and done this to my brain I’d be in a wheel chair. I’ve been on the ketogenic diet for over a year and my fatigue, balance, clarity of speech, everything keeps getting better and better. I can work again now. If only part time. I am very thankful for this and I hope others can find answers too.


#7

I’ve just stated my KetoDiet! Been on it for a month and a half now. I’ve found it very helpful, although I’m fully aware that it’s not a cure. I’m a PhD student and I was really worried if I can ever have a job cuz I feel mine is kinda rapidly progressive although it should not be cuz my diagnosis is EA. Now with the improvement I’m witnessing I’m hopeful that I can hold down a job, maybe part time, when I graduate. Very encouraging to know that someone also experience good result!! :blush: I thought I was the only one on this diet haha. I’m also starting to fast cuz I feel when I overeat the symptoms are more evident.


#8

:smirk:Several years ago, on the trail to diagnosis, I was misdiagnosed with Epilepsy. I tried the Ketogenic Diet. It wasn’t really the answer, and I didn’t stay on it long.

The Ketogenic Diet is acknowledged as proven therapy for Epilepsy (some types of Episodic Ataxia are associated with Epileptic symptoms). Basically, it’s low fat, low protein and low carbohydrate. This sounds good if you’re also looking for weight loss but, there are certain situations where the Ketogenic Diet can do more harm than good. It’s main use as therapy is to treat drug resistant seizures, especially in children and adolescents🙂xB


#9

Hi, Apolgies for the belated reply. Fantastic keto is helping you and fasting sounds like a fantastic option. I try IF but haven’t done anything longer. Let me know what works best for you as I need some inspiration! I think alot of my health issues were just ignored because of my ataxia, so my vitamin and mineral levels were “within range” but not optimal, my hormones were compromised, my gut and digestion were compromised, I had heaps of toxins produced internally and in my environment… the list is huge and tedious. But everything helps! So worth it. Everyone is an individual but let me know if you want anymore info on what has worked for me.


#10

Hi Kylee,

Thanks for the reply! I am doing a near carnivore diet with probably <5g carb. I eat any meat and any types of animal fats, MCT oil, coconut oil for bulletproof drinks and a small amount of cheese as treats. Vegetable-wise, I eat avocado, blueberries, sauerkraut, pickled garlic, yogurt and on rare occasions some leafy (maybe once every few weeks). I eat dependent on what my brain tells me to (if I feel like fat I eat fat, if meat I eat meat, if small carb I eat a few blueberries). I realise my condition is best controlled with extremely low carb rather than the normal keto diet. As I have EA so I kind of treat my problems like other episodic neurological disorder like epilepsy. I find if I do fast longer than 36 hours I start getting some symptoms (maybe to do with stress response?) so I generally fast 24 hours twice or three times a week. I fast so I don’t overconsume on animal protein, and overwork my kidney. My eye fixation is getting better and have greater mental clarity. Although I still have episodes but overall I am feeling pretty great. My physical stamina has increased a lot, and now I can swim around 3 km a week easily. My partner thinks I am a total weirdo and my meals are disgusting haha, but I actually really enjoy my food. Also he’s a doctor so he thinks I am crazy to do zero-carb (he’s not against keto). Flavours are unimportant to me now as I just don’t crave for them. I’m only 2 month in so still a newbie. I understand with any diet it’s important to monitor the long-term effect. How do you do your keto diet? (Soz about the long reply!).


#11

Oh I also eat seaweed sometimes to top up iodine. Yeah I agree the diet is really worth trying. Diet is probably the only viable thing that works on changes to the overall system rather than symptom management. Good luck with your quest for good health :slight_smile:


#12

Hi Anna,

Glad it’s all working for you! And thankyou for telling me what works in terms of fasting. 24 hrs afew times a week sounds really do-able and I should. I keep having bulletproof coffee in the morning even though I only eat one meal a day M-F and it blunts the great effects of fasting for me so I should change that.

My keto diet is driven pretty much by my husband and son. So I’m really conscious of them getting enough veg fibre/diversity so this way of eating is not bad for their microbiomes. Bizarre that I think of that stuff… So my diet is strict, my husband less so and my son less than that with unlimited fruit. So I eat maybe 50-125g of meat/protein a day (depending on how I feel) and lots of low carb veg, not much dairy. Lots of butter though. Lots of fermented food. Lots of eggs, blueberries, avocado. And my son is 8 so lots of deserts. Chia pudding, avocado chocolate mousse, home made icecream, dark chocolate (90%)…

Overall my balance and co-ordination is better and so is my quality of speech. My overall resilience really. I don’t get nearly as tired anymore. Beside diet, I find lifestyle and environment factors really important and I use lots of alternate therapies to help me along. I experiment with hyperbaric oxygen, infa red sauna, light therapies, iv glutathione/vit c. You can see I was desperate.

Your partner must think it’s fantastic your health is better! So if what you’re doing is working, it’s great. And it must be pretty amazing to him that food is so powerful.

Cheers, Kylee.


#13

I think it’s good that you let your child to eat a relatively traditional diet since it’s too much of a gamble with this diet. I would not advice my loved ones to go on ketogenic diet unless with good reasons really, although I do think paleo diet is good. As with fasting, I do drink bulletproof coffee even on the fast day (my fast is not hardcore at all haha, I think you do it better than me :p). My reason to fast is to give my kidney a rest from processing waste product from protein breakdowns. Fat fast imo is ok if my objective is not about losing weight. Btw, what’s your opinion about hyperbaric oxygen therapy? Is it any good?