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My Epilepsy Experiment. Anyone else have seizures?

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  • #46
    Originally posted by Luce View Post
    People who is not refractory to drug treatment has better outcomes with ketosis, a deeper ketotic state than what we call ketotic here when starting but reports are good. Then diet should be tailored to the patient needs and those vary significantly. I know someone who tried this with her daughter but they fail to keep her away from sweets, she has other disabilities (Cornelia de Lange related) and saying no comes hard when other kids go pizza.

    It's unnerving how meds with huge side effects displaced diet as a treatment of seizures, diabetes and some other conditions. Is great there are pills but people should be given the chance to try and heal without them.

    Luce
    Interesting. I would like to know where you are getting your data on that so I can look into it more. Thank you.

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    • #47
      Originally posted by Paleobird View Post
      Interesting. I would like to know where you are getting your data on that so I can look into it more. Thank you.
      Is old data, more than twenty years ago I went through everything there was on ketosis because of my grandgrandmother (diabetic) and little brother (on tegretol since infancy because of seizure, today seizure free medication free since ten years). Most modern studies are about pediatric cases and things don't work exactly the same way with adults (or teenagers). Most of material was paper, no internet when I was little and curious. I got into the thing again because the woman who lives with my ex husband has a nephew with a severe condition which includes life threatening seizures, refractory and not accepting diet limitations. I found stuff -modern stuff- on the internet but most of the old material I couldn't get.

      You don't fit the protocol because you do well on drugs? I remember something relating phenobarbital with less success rate in patients going ketotic but I'll have to go through some brain debriefing before I remember where the hell I got that from (avid reader, particular sort of memory: I may retrieve concepts but for a reason I loose context sometimes).

      Have you read ancient greek work on diet and ketosis? I remember I was in total awe while reading it when I first looked into it.

      Luce
      No limits, only my will and the worlds I build.

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      • #48
        Yes, they did tend to concentrate all the research on children for a while there and, true, pediatric epilepsy is a different best from adult epilepsy.

        I'm glad your brother has become seizure free.

        That's fascinating about ancient Greek work on this subject. I must look that up.

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        • #49
          I started having seizures when I was about 1 1/2 years old and I still have them at 27. (Pro-tip for parents with epileptic kids: Don't dwell on what your kid can't do, they only know what they are missing if people tell them.) They range from three in four days to a year and a half apart and tend to be stress induced (Physical or mental, usually both), though if I go more than 9-10 months without one then I'll start having auras over every little thing until something trips it. I have them down to 1-2 per year with stress management.

          I was on phenobarbital for a while during elementary school but I was taken off because it gave me horrible hallucinations. In high school I was put on lamictal which did not work, and later trileptal which also didn't work. I weaned myself off trileptal when I started college. I split my last bottle up so I would have equal amounts of time at 75%, 50%, and 25%, so roughly two weeks at each level and never had any bad things happen because of it.

          I'm looking at ketosis to possibly eliminate them but using Paleobird's formula's from other threads, I'm not sure how I'd manage that few carbs.
          Primal Journal

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          • #50
            Originally posted by Quies View Post
            I started having seizures when I was about 1 1/2 years old and I still have them at 27. (Pro-tip for parents with epileptic kids: Don't dwell on what your kid can't do, they only know what they are missing if people tell them.) They range from three in four days to a year and a half apart and tend to be stress induced (Physical or mental, usually both), though if I go more than 9-10 months without one then I'll start having auras over every little thing until something trips it. I have them down to 1-2 per year with stress management.

            I was on phenobarbital for a while during elementary school but I was taken off because it gave me horrible hallucinations. In high school I was put on lamictal which did not work, and later trileptal which also didn't work. I weaned myself off trileptal when I started college. I split my last bottle up so I would have equal amounts of time at 75%, 50%, and 25%, so roughly two weeks at each level and never had any bad things happen because of it.

            I'm looking at ketosis to possibly eliminate them but using Paleobird's formula's from other threads, I'm not sure how I'd manage that few carbs.
            Being seizure free on less meds is worth giving up sweet potatoes for. I would be interested to hear how things go for you if you decide to give it a try.

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            • #51
              Originally posted by Paleobird View Post
              [/B]Being seizure free on less meds is worth giving up sweet potatoes for. I would be interested to hear how things go for you if you decide to give it a try.
              I'm not talking sweet potatoes here.

              Determine your *ideal* weight in kilos, your Hot Stuff in Swimwear (HSIS) weight
              HSIS in kilos +/- 10% is your protein range in grams
              HSIS divided by 2 is max carbs
              the rest is fat HSIS x 2-3.5 range.
              HSIS: 42kg
              Protein: 38g-46g
              Carbs: 21g
              Fat: 84g-147g

              I know it's possible and I'm willing to try. I'm just trying to figure out the logistics.
              Primal Journal

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              • #52
                Originally posted by Quies View Post
                HSIS: 42kg
                Protein: 38g-46g
                Carbs: 21g
                Fat: 84g-147g

                I know it's possible and I'm willing to try. I'm just trying to figure out the logistics.
                42kg? Really? That's like 92.5 pounds. Are you very petite in stature? Some of the other ladies who are on the short end of the spectrum were commenting that they didn't think the Dr. JK formula worked well for their end of the bell curve. You might wan't to adjust upward a bit.

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                • #53
                  I'm 4' 10 1/2" and that is my current weight. I started eating primal over a month ago at 97 pounds. I lost four pounds the first week and all that did was flatten my belly. Every time I have stepped on the scale since then it has said 92 or 93. I am not skinny-fat. I do landscape work with my dad and can work circles around guys twice my size who play sports or go to the gym.

                  I used the 100lbs, add 5 pounds for every inch over 5' and that fits perfect.
                  Primal Journal

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                  • #54
                    OK. That does fit then. I just needed to know that you were not 5'8" and anorexic.

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                    • #55
                      Not a problem, I have this weird weight paradox where if people guess how much I weigh, they routinely guess over 100, but if they pick me up they say I am heavier than I look. I think it's just hard for people in general to believe someone can weigh less than 100lbs and be healthy.

                      Now about those 21 carbs. It looks like that nixes my BAS for lunch.
                      Primal Journal

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                      • #56
                        Originally posted by Quies View Post
                        Not a problem, I have this weird weight paradox where if people guess how much I weigh, they routinely guess over 100, but if they pick me up they say I am heavier than I look. I think it's just hard for people in general to believe someone can weigh less than 100lbs and be healthy.

                        Now about those 21 carbs. It looks like that nixes my BAS for lunch.
                        We are counting net carbs here not total carbs so a lot of fibrous things in a BAS might not be so bad.

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                        • #57
                          Do you have a good calculator for figuring that out?
                          Primal Journal

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                          • #58
                            Originally posted by Quies View Post
                            Do you have a good calculator for figuring that out?
                            Net carbs are just total carb grams minus the fiber grams. On SparkPeople they have a tracker that figures it for you automatically.

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                            • #59
                              Thank you for the help Paleobird. Though my salad is, indeed, too big for ketosis.

                              I started a journal so I can keep track of things without hijacking your thread anymore.
                              http://www.marksdailyapple.com/forum/thread65482.html
                              Primal Journal

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                              • #60
                                Hi, I'm another one with night time seizures. First seizure was at age 35 and I'm seizure free thanks currently to keppra. I'll be following this thread with interest as I'm almost at the maximum dose (currently 3g per day). I too worry about the long term effects of this dose, but I'm only on day 3 of PB life, so I need to get through that adjustment before I consider dropping the dose.

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