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AVM Survivors Network

Any one else doing the Keto diet and taking THC/CBD


#1

Hello everyone!
I’ve been managing my seizures (up to four a day) with the Ketogenic diet and THC/CBD oil. I’ve gone three weeks without a partial seizure so far. Is anyone else doing this? the diet is not easy and when I’ve gone off of it I almost immediately have a seizure, then it takes me a week to get the effects of the diet again. Its a pain, but worth it. The seizure meds I’ve taken were absolutely horrible. I do worry about THC and its effect on my memory since memory is an issue for me, but the Doc says its worth it due to the damage of months of daily seizures.


#2

Hi there,

We are also using CBD oil for seizure management and hoping for some healing. We are not up to our therapeutic dose yet, for my younger daughter, so it may take some time, but I am remaining hopeful. I know about the Keto diet, which is very difficult for a tween to be on. A friend of mine has her young adult daughter on what she calls Modified Atkins diet and she feels it absolutely makes a difference in the number of seizures she has. Also look into Bioenergy. I believe anything that can potentially help the body heal itself is worth looking into. Best Wishes, Melissa


#3

Hi Melissa! I’m glad you mentioned the MAD ( Modified Atkins) I started with the ketogenic and got great results but after a couple weeks it was really hard and I transitioned to the MAD diet. It’s been great for me because I exercise so much and I didn’t feel like I had enough energy on the Keto. After two successful months on the MAD and the oils I feel so good that I am slowly weaning to take the smallest dosage possible and including some healthy carbs ( such as sweet potatoes) before exercise. Also I want to say to keep in mind these diets are very acidic, and we really want to be alkaline so I can’t stress enough to drink lemon water. I feel so passionate about this because it’s given me my life back! I wish that for everyone who deals with this situation.


#4

Also I just want to share that the CBD alone didn’t work for me. I know many are hesitant to try THC especially with kids, but I am now taking such a low dose of THC that I don’t have any “high” quite frankly it’s just so worth it to me!


#5

Hi there - very interesting! I also love lemon water but hard to get my girl to drink it. She doesn’t like sour tastes. Any ideas on how to slip that into something even once a day… what is your particular oil routine?

Melissa


#6

I would suggest looking up alkaline foods and see if anything from there is something you could get her into. I’m not a huge advocate of alternative sweetners but I think it would be worth the benefit if you put a little stevia in the lemon water. Stevia seems to be the most natural and zero carbs. As far as the oils go, I’ll tell you that there was a lot of trial and error. The first time I took WAY too much (as recommended at the medical marijuana dispensary) and felt very stoned for a couple days BUT they were the first two days I hadn’t had multiple seizures so I figured I got something right lol. I eventually found that 3.4 mg of THC and 7 mg of CBD so basically a 1:2 ratio THC:CBD worked best three times a day. I’ll post a photo of the brands I use if you want. I’m now doing so well that I’m doing less than half of that which helps with my energy levels too. To give you an idea of how you might try dosage I’m 5’5 and 110 lbs. Unfortunately I couldn’t find any information about dosage for Epilepsy, so I really hope that my trial and error can help others!