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My Epilepsy Experiment. Anyone else have seizures?

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  • #16
    Originally posted by anova01 View Post
    I wish you the best of luck in reducing the pharmaceutical use. Do give an update later on so we can see what impact the ketosis regimen has on your condition. I know that phenobarbitol can lead to liver damage so hopefully this is a viable alternative.
    Thanks. Good to know about the liver damage. That is one of the things that concerns me particularly since my liver is now 50 years old.
    So far it has been a week at the lower dosage and I'm feeling energetic and sleeping right through the night. I will update as we go.

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    • #17
      What a great thread Paleobird! My son and grand daughter both have epilepsy. I will watch your N=1 experiment with great interest. I've read the book "Ketogenic Diets" by Kossoff, Freeman, Turner, and Rubenstein. I just bought it for my daughter so she can read it.
      ...how do you look, feel, and perform? -- Robb Wolf

      My Blog.

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      • #18
        Originally posted by Bodhi View Post
        What a great thread Paleobird! My son and grand daughter both have epilepsy. I will watch your N=1 experiment with great interest. I've read the book "Ketogenic Diets" by Kossoff, Freeman, Turner, and Rubenstein. I just bought it for my daughter so she can read it.
        Hey there, old friend. Nice to see you.
        I didn't know that about your son and grand daughter. How old were they when they started having seizures?
        Most of the earlier research about keto for seizures was all done about children but now the Atkins company is partnered up with Johns Hopkins to help adults as well.
        They have a website ArkinsForSeizures.com that your family might find helpful.

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        • #19
          I just noticed that one of my favorite posters from paleohacks (ambimorph) has her own blog now The Ketogenic Diet for Health

          She has always reported the evidence without agenda IMO. The apologia The Ketogenic Diet for Health: Apologia is a frame work that I would say she has followed in her posts on paleohacks. Many bloggers/posters pay lip service to these sort of things with little follow through. I would expect some really good things as her blog develops.

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          • #20
            Originally posted by Neckhammer View Post
            I just noticed that one of my favorite posters from paleohacks (ambimorph) has her own blog now The Ketogenic Diet for Health

            She has always reported the evidence without agenda IMO. The apologia The Ketogenic Diet for Health: Apologia is a frame work that I would say she has followed in her posts on paleohacks. Many bloggers/posters pay lip service to these sort of things with little follow through. I would expect some really good things as her blog develops.
            Thanks, Neckhammer. That looks like it is developing into a very informative site. People who back up their assertions with evidence. I like it.

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            • #21
              Well, just an update. Two weeks in at 25% off one medication and doing great. Sleeping fine. No auras.
              I should probably not get ahead of myself and try to push this too far too fast. I should probably let my system get used to this level.

              Anyone have any experience with coming off of meds, epilepsy or otherwise? Did you step down gradually or just toss the bottle?

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              • #22
                Last night when I went to take my pills before bed I realized that I had completely forgotten to take them the night before. Yikes.

                But here's the thing. Not only did I not have a seizure, I felt great!
                I was buzzing though the whole day yesterday with energy galore.

                Maybe I've been medicated so long I don't remember what it's like to be normal.

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                • #23
                  My son had his first seizure at 4. He didn't have another one until he reach about 17. My grand daughter had her's at 3 years old.
                  ...how do you look, feel, and perform? -- Robb Wolf

                  My Blog.

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                  • #24
                    Originally posted by Bodhi View Post
                    My son had his first seizure at 4. He didn't have another one until he reach about 17. My grand daughter had her's at 3 years old.
                    A lot of times when people's seizures start when they are that young they "grow out" of them when puberty hits. Do your relatives still have seizures. Are they on meds?

                    I'm hoping that, by passing the hormonal changes of menopause, I may have "grown out" of mine at least to a degree.

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                    • #25
                      Originally posted by Paleobird View Post
                      Well, just an update. Two weeks in at 25% off one medication and doing great. Sleeping fine. No auras.
                      I should probably not get ahead of myself and try to push this too far too fast. I should probably let my system get used to this level.

                      Anyone have any experience with coming off of meds, epilepsy or otherwise? Did you step down gradually or just toss the bottle?
                      When I weaned off the Topamax, my neurologist gave me a plan on reducing my dose and frequency over a month or so. He was on board with the neurofeedback (though skeptical). He even called me 2 weeks in to ask how I was feeling. I had an EEG after getting completely off them. No partial seizures since (knock on wood!!)!
                      http://www.marksdailyapple.com/forum...d61289-12.html

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                      • #26
                        if your children are autistic they have a higher chance of having (more seizures, or developing) seizures with the onset of puberty (not to be a pessimist or anything, i teach in a severely handicapped autism classroom)

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                        • #27
                          I would wean off slowly---thats what I did. I actually worry that I could seize again with the onset of perimenopause...since mine started right around the beginning of my menstrual years! Hoping that is not the case and hoping just the possibility alone will help me stay on track dietarily speaking.
                          Check out my blog on nature and nurture!
                          http://thewoodsygal.com/

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                          • #28
                            Originally posted by avocadogirl View Post
                            When I weaned off the Topamax, my neurologist gave me a plan on reducing my dose and frequency over a month or so. He was on board with the neurofeedback (though skeptical). He even called me 2 weeks in to ask how I was feeling. I had an EEG after getting completely off them. No partial seizures since (knock on wood!!)!
                            That's so awesome to hear. I really don't like the mentality of here, take these pills for the rest of your life. Don't even think about alternative answers. When you are first having seizures you just want them to stop and so you will accept anything that gives you a good result. I'm so glad you found your solution.

                            Originally posted by snowkid03 View Post
                            if your children are autistic they have a higher chance of having (more seizures, or developing) seizures with the onset of puberty (not to be a pessimist or anything, i teach in a severely handicapped autism classroom)
                            Hello fellow San Diego person. I didn't realize that there was a connection between autism and epilepsy. Interesting. So, I take it you have to deal with a fair number of seizures in the kids you teach? BTW, you are a saint for doing that work. That is not easy.

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                            • #29
                              Originally posted by solstice View Post
                              I would wean off slowly---thats what I did. I actually worry that I could seize again with the onset of perimenopause...since mine started right around the beginning of my menstrual years! Hoping that is not the case and hoping just the possibility alone will help me stay on track dietarily speaking.
                              I never had one bit of menopause "symptoms" like hot flashes or anything. From what I'm reading around here, Primal women do seem to have an easier time of keeping the hormones on an even kilter. Hopefully that will make the transition easier when that time comes for you. Another good reason to stay Primal.

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                              • #30
                                Both of them are on meds. My son has been seizure free for almost 8 months. My grand daughter's last seizure was about 3 months ago. I bought the book "Ketogenic Diets" for my daughter so she could look into put the grand daughter on the diet. But she is a really picky eater. My son is 30 years old. I've preached the diet to him, but he's not interested.
                                ...how do you look, feel, and perform? -- Robb Wolf

                                My Blog.

                                Comment

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