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Thread: My Epilepsy Experiment. Anyone else have seizures? page 2

  1. #11
    Paleobird's Avatar
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    Quote Originally Posted by solstice View Post
    Yes---I too have had seizures---grandmals that started around the time I started menstruating (14). I stayed on Tegretol but went to extremely low doses---so low that my doctor said they couldnt be having any kind of protective effect (but I could tell when I did NOT take it, so I didnt really care what the docs said). My last seizure was when I was 23 and newly married---messed with my system by going on birth control and I think that is what triggered the seizure. I stayed on meds through my two pregnancies (still wondering how that has negatively affected my kiddos), but went off all meds about 2 years ago. I have continued to be seizure free and try to be diligent about eating a clean diet---especially the week leading up to my period! Paleobird---are you still menstruating? Maybe post menopause you'll have better control of seizures.

    I too only got them at night...either right as I was drifting off to sleep or waking in the morning.

    Not keto here, but have gone really low carb at times---never felt that great doing it, but it was the only way to put a sig. dent in my weight. I'm probably higher carb at the moment (not tracking, but randomly eating some GF grains at times), and have been avoiding the scale, but I do feel pretty good on this way of eating so far
    I did menopause already a few years back. Back in the day, I did find that my seizures went with my cycles too.

    Interesting about the BC pills. I was already on them when I started getting seizures. I am thinking the same thing that perhaps, post-menopause, I don't need as high a dosage as I once did.

    Yep, me too. Mine are right as I enter or am coming out of sleep.

    I think just the "clean" aspect of Primal eating is very important. I think that's what I initially did when I cut out all the junk and got into body building.

  2. #12
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    avocadogirl is offline Senior Member
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    Regarding neurofeedback, a good book to read is "A Symphony in the Brain" by Robbins. It's a good place to start.

    As a long time meditator, I'm a firm believer in that whole "mind over matter" business, but I then I only tried it once I lost too much weight on Topamax. As a chemist and someone who worked for a small pharma out of college, I'm not opposed to drugs per se, they do save lives but aren't always necessary and definitely over-used here on this side of the pond. Essentially, I went on Topamax reluctantly so I would be allowed to drive again, and then went off of it when my weight got down to 105, skeptical that it was hurting me more than helping. My neurologist was very helpful and supportive of any alternative therapies I wanted to try, and he helped me taper off slowly once I started my neurofeedback sessions. I spent many months going to weekly sessions and lots of cash too. It was worth it because it helped me. I'm not sure everyone is a candidate. I don't believe in any one particular miracle cure (for any particular disease, for that matter).

    The mom with the daughter also tried it after the high-fat, ketogenic diet did not work. I helped her pay for it because I was certain it would work. It didn't. they are back to her taking Phenobarbital but at least her seizures are under control.

  3. #13
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    wow, very interesting to hear everyone's input! please keep us updated.
    I too have seizures though no one in my family ever has had. I am 33 and they first started 6yrs ago - it was a super hot day, i hadn't eaten yet, and just as i was getting my lunch, i had my first grand mal. The next one was 1.5yrs later, and the the next 1yr later. Now i only get them during sleep, one every few months or so. Though i do get dizzy spells during the day a couple times a month (i take a glucose tablet and they seem to help my dizzy spells). I too log everything and notice a pattern with my cycle too (i have heavy period and am anemic).
    I just started the paleo diet a month ago and am better about taking my vitamins.

  4. #14
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    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.
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  5. #15
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    Quote Originally Posted by avocadogirl View Post
    Regarding neurofeedback, a good book to read is "A Symphony in the Brain" by Robbins. It's a good place to start.

    As a long time meditator, I'm a firm believer in that whole "mind over matter" business, but I then I only tried it once I lost too much weight on Topamax. As a chemist and someone who worked for a small pharma out of college, I'm not opposed to drugs per se, they do save lives but aren't always necessary and definitely over-used here on this side of the pond. Essentially, I went on Topamax reluctantly so I would be allowed to drive again, and then went off of it when my weight got down to 105, skeptical that it was hurting me more than helping. My neurologist was very helpful and supportive of any alternative therapies I wanted to try, and he helped me taper off slowly once I started my neurofeedback sessions. I spent many months going to weekly sessions and lots of cash too. It was worth it because it helped me. I'm not sure everyone is a candidate. I don't believe in any one particular miracle cure (for any particular disease, for that matter).

    The mom with the daughter also tried it after the high-fat, ketogenic diet did not work. I helped her pay for it because I was certain it would work. It didn't. they are back to her taking Phenobarbital but at least her seizures are under control.
    Thank you. I will check that out. Good to know it is not a panacea, really. Most things that are billed as such, usually aren't. I'm glad it worked for you.

    Quote Originally Posted by kiks View Post
    wow, very interesting to hear everyone's input! please keep us updated.
    I too have seizures though no one in my family ever has had. I am 33 and they first started 6yrs ago - it was a super hot day, i hadn't eaten yet, and just as i was getting my lunch, i had my first grand mal. The next one was 1.5yrs later, and the the next 1yr later. Now i only get them during sleep, one every few months or so. Though i do get dizzy spells during the day a couple times a month (i take a glucose tablet and they seem to help my dizzy spells). I too log everything and notice a pattern with my cycle too (i have heavy period and am anemic).
    I just started the paleo diet a month ago and am better about taking my vitamins.
    Interesting. Another person with nighttime seizures. That's a good point about iron possibly being involved. I know I feel much better all around when I eat liver regularly.

  6. #16
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    Quote 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.

  7. #17
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    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.
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  8. #18
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    Quote 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.

  9. #19
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    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.

  10. #20
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    Quote 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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