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My Epilepsy Experiment. Anyone else have seizures?

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  • #76
    Well, I'm doing better since getting back in the ketogenic groove post holidays. This past week, I realized by looking at my pillbox that I had missed two out of the seven doses of meds. I hadn't felt a thing. Slept just fine.

    I might make this into a regular thing, say taking one day a week with no pills as a sort of r&r clean out opportunity for my liver.

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    • #77
      awesome news paleobird! I'm still off meds but used to be able to "feel" it when I missed (back in my SAD days though)---great that you aren't having that sensation. I am feeling great but still dealing with the IBS issues. Going to stay strictly fats/meats/liver/eggs for a few days. I had a stew on sat and although tried to eat the beef and bacon still probably got some other stuff in my gut.
      Check out my blog on nature and nurture!
      http://thewoodsygal.com/

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      • #78
        Originally posted by Paleobird View Post
        My apologies, kiks. I must have missed this. My Dad was in his last few weeks when you posted. He passed away in November so I was a bit preoccupied.

        The comment about getting things on an even keel before fiddling with the meds was directed at caz1969, not you.

        You don't need a doctor's approval to do supplements if you think they will help.

        That's interesting. Another case of sleep seizures like mine.
        Hi Paleobird...I'm sorry about your loss. I just saw this response.

        Regarding the 'fiddling with meds', I think when I asked you about that I was just wondering what you meant (not that it was directed at me)...I was wondering b/c in Oct I was contemplating starting meds and if you thought meds weren't the answer for seizures. I do get seizures, they started in my late 20s out of the blue. At the beginning they occurred about one per year...but as time went on, in the past year or two they have been monthly (and i got them in my sleep). Anyway, I did begin taking medicine for my seizures in Oct.
        Does anyone have recommendations about what types of tests to request for my followup dr visit?

        Btw I do appreciate the comments regarding coffee, chocolate, alcohol, etc...just to see how others with seizures handle these stimulants/depressants.

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        • #79
          Originally posted by kiks View Post
          Hi Paleobird...I'm sorry about your loss. I just saw this response.

          Regarding the 'fiddling with meds', I think when I asked you about that I was just wondering what you meant (not that it was directed at me)...I was wondering b/c in Oct I was contemplating starting meds and if you thought meds weren't the answer for seizures. I do get seizures, they started in my late 20s out of the blue. At the beginning they occurred about one per year...but as time went on, in the past year or two they have been monthly (and i got them in my sleep). Anyway, I did begin taking medicine for my seizures in Oct.
          Does anyone have recommendations about what types of tests to request for my followup dr visit?

          Btw I do appreciate the comments regarding coffee, chocolate, alcohol, etc...just to see how others with seizures handle these stimulants/depressants.
          Thank you.

          No, I would never recommend against taking seizure meds if they help get them under control and don't cause horrible side effects. In the long term, I worry about the buildup of chemical substances in my liver, kidneys, etc. so I would like to minimize the meds while still maintaining seizure control. This is a delicate balancing act.

          Have the meds you started taking been working well? What about any side effects? Remember there are a lot of different medications out there and each person reacts differently to each one so if one is not working, try something else.

          Ketosis, to me is something to work on once your situation is stable.

          I wish you well.

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          • #80
            I'm grateful I don't have this problem, but one of our dogs does, and a number of the dogs of our friends also have it. No cats that I've heard of.

            Occasionally veternary science is ahead of human medical science. Maybe it would be worth a look there.
            "When the search for truth is confused with political advocacy, the pursuit of knowledge is reduced to the quest for power." - Alston Chase

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            • #81
              I've been overdoing the chocolate once again...I'm glad this post was unearthed.
              Check out my blog on nature and nurture!
              http://thewoodsygal.com/

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              • #82
                Originally posted by Cryptocode View Post
                I'm grateful I don't have this problem, but one of our dogs does, and a number of the dogs of our friends also have it. No cats that I've heard of.
                Occasionally veternary science is ahead of human medical science. Maybe it would be worth a look there.
                Is your dog on grain free food? Might be worth a try.

                Originally posted by solstice View Post
                I've been overdoing the chocolate once again...I'm glad this post was unearthed.
                I found that even overdoing the Crio Bru is not a good idea. After several days in a row of indulging (I have a house guest who loves it and so I make it for her, really) , and then not having any one day, I got a horrible headache and felt like sleeping the whole day. Our brains are just more sensitive than other peoples'.

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                • #83
                  Paleobird, I know I have read in other threads that you experienced seizures, but reading this thread gave me a deeper understanding of the types. I have a 13 year old daughter with cerebral palsy, she started having seizures about 2 1/2 years ago. And they are night seizures like yours. And the whole "aura" thing you experience seems like what my daughter has too. She can't tell me that, (because she is non verbal) but I have a video baby monitor set up, and I check on it a lot at night, and it would seem that she has "auras" too right before, but she doesn't have the mental capacity to wake up to get past them. She has been taking generic Keppra since the start of her seizure activity, she still has seizures that break thru the meds. I have tried so hard to understand the rhyme and reason of why she has more of them at certain times than others. I do believe it is connected to her hormones. She hasn't started menstruating yet, but it is on the horizon. It's like her body is starting to go thru a cycle, she just hasn't started an actual period. Thru the month of december she had 3 in a 3 week period, and i realized her face had broken out a lot with acne. So I am assuming a spike in her hormones caused this. I give her diastat if her seizures go beyond 3 minutes, this month i had to administer 2 and call 911 because of that. I try to give her a lot of fat. I am wondering if I should go full on ketogenic with her. She has serious issues with constipation bc of her low muscle tone, so I don't know how that would affect it. I will be paying close attention to this thread to keep up with your progress and the others' as well. I have to be honest, when I read this thread I nearly started crying, just to know that there are others' that I can connect with who have similar experiences and can verbally communicate them, will hopefully help me to understand my daughter better, seeing that she can't describe her seizure experiences to me. Thank you for that.

                  PS My husband and son have ADHD, maybe another motivation to try to get my family to go primal?

                  Comment


                  • #84
                    Originally posted by 14emom View Post
                    Paleobird, I know I have read in other threads that you experienced seizures, but reading this thread gave me a deeper understanding of the types. I have a 13 year old daughter with cerebral palsy, she started having seizures about 2 1/2 years ago. And they are night seizures like yours. And the whole "aura" thing you experience seems like what my daughter has too. She can't tell me that, (because she is non verbal) but I have a video baby monitor set up, and I check on it a lot at night, and it would seem that she has "auras" too right before, but she doesn't have the mental capacity to wake up to get past them. She has been taking generic Keppra since the start of her seizure activity, she still has seizures that break thru the meds. I have tried so hard to understand the rhyme and reason of why she has more of them at certain times than others. I do believe it is connected to her hormones. She hasn't started menstruating yet, but it is on the horizon. It's like her body is starting to go thru a cycle, she just hasn't started an actual period. Thru the month of december she had 3 in a 3 week period, and i realized her face had broken out a lot with acne. So I am assuming a spike in her hormones caused this. I give her diastat if her seizures go beyond 3 minutes, this month i had to administer 2 and call 911 because of that. I try to give her a lot of fat. I am wondering if I should go full on ketogenic with her. She has serious issues with constipation bc of her low muscle tone, so I don't know how that would affect it. I will be paying close attention to this thread to keep up with your progress and the others' as well. I have to be honest, when I read this thread I nearly started crying, just to know that there are others' that I can connect with who have similar experiences and can verbally communicate them, will hopefully help me to understand my daughter better, seeing that she can't describe her seizure experiences to me. Thank you for that.

                    PS My husband and son have ADHD, maybe another motivation to try to get my family to go primal?
                    Goodness that sound like you have a lot to cope with but are doing it well.

                    I highly recommend the blog of Dr Georgia Ede called Diagnosis : Diet. She is a psychiatrist and so is approaching paleo eating from the neurological perspective. She eats paleo herself as well as recommending it to her patients.

                    Comment


                    • #85
                      Originally posted by Cryptocode View Post
                      I'm grateful I don't have this problem, but one of our dogs does, and a number of the dogs of our friends also have it. No cats that I've heard of.

                      Occasionally veternary science is ahead of human medical science. Maybe it would be worth a look there.
                      One of the pet food companies developed a ketogenic diet for dogs several years back, but never put it into production because their study showed no improvement in seizure control over placebo. To my knowledge, that's the only study that's been done on the matter. I'm not sure that the mechanism by which ketosis improves seizure control in people is well enough understood to say whether or not it should work. Dogs are significantly better at gluconeogenesis (making glucose from protein) than people, so it may be that a ketogenic diet for them would need to be even more severely protein restricted to be effective. Unfortunately, I doubt there will ever be much more investigation into this for pets, though it's definitely an interesting idea

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                      • #86
                        Well, I have recently reached the five years post-treatment for cancer mark and so I have been given the all clear to stop taking my hormone blocking pills. It will be interesting to see if this has any effect on my metabolism.

                        I plan to let this medication change settle in for a while before thinking about cutting back on the seizure meds any more. One chemical change at a time.

                        According to my now former oncologist (Whoot!), after five years one is, statistically speaking, at just about the same risk of cancer as any other random person.

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                        • #87
                          "Right is right, even if no one is doing it; wrong is wrong, even if everyone is doing it." - St. Augustine

                          B*tch-lite

                          Who says back fat is a bad thing? Maybe on a hairy guy at the beach, but not on a crab.

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                          • #88
                            That is truly great news PB.

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                            • #89
                              Thanks Joanie and Ayla. I'm having a bit of a Happy Dance week. I got that news from my (former) oncologist and I also accepted an offer on my house. Escrow is on.

                              Lots of changes going on for me. The thing about my HFLC diet is it allows me to get stuff done and not be distracted by hunger or the temptations of junk food. I'm really only eating once a day these days. The extra time is very handy.

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                              • #90
                                This : Your Brain on Ketones - Primal Docs

                                ia a very good explanation of the mechanism by which ketosis is effective for epilepsy and other neurological disorders. Thanks for finding the link goes to Cryptocode.

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