Announcement

Collapse
No announcement yet.

My Epilepsy Experiment. Anyone else have seizures?

Collapse
X
  • Filter
  • Time
  • Show
Clear All
new posts

  • #31
    Originally posted by Bodhi View Post
    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.
    The Atkins version of the ketogenic diet that they are using at Johns Hopkins is much less stringent and easier to follow than the classical keto diet was but the results are just a good. This Modified Atkins Diet(MAD) is 64/30/6 f/p/c, as opposed to the 80/10/10 of the original. That would be hard to stick to. The MAD is not that different from regular Primal, just really strict on the carbs but it allows you to have a good amount of protein not just fat with a side of fat.

    I imagine that the MAD would also be much easier to get a child to stick with.

    Comment


    • #32
      ahh yes I'm already finding that putting those gf grains back in has caused me to be more depressed lately and put on a few pounds to boot. Thanks for the reminder to stay primal!
      Check out my blog on nature and nurture!
      http://thewoodsygal.com/

      Comment


      • #33
        Originally posted by solstice View Post
        ahh yes I'm already finding that putting those gf grains back in has caused me to be more depressed lately and put on a few pounds to boot. Thanks for the reminder to stay primal!
        I think that's great that you are that self aware. I wish I had known about primal when I was your age.

        Comment


        • #34
          This morning about 5am I was rudely awakened by one of my pre-seizure auras. I was able to wake up fully fast enough and make it stop with the assistance of my wonderful dog. He gives me enough lead time that I wouldn't have alone by pawing at me and whining and licking my face.

          My first though was, darn, it's the lower med dose then I saw my pill box and realized that I forgotten to take my pills entirely last night. That makes two times in a week. I just don't do that. I never forget my pills. I think on some subconscious level I am rebelling against taking them.

          It's good to know that it wasn't just the lower dose causing the problem. I'm going to stick with the 25% reduction for a little while and try to be good about taking them consistently and let things settle down for a while.

          Comment


          • #35
            I love your dog!

            I rebelled against my drugs in college and am pretty sure I ended up seizing one night (broken blood vessels under my eyes were usually a tell-tale sign.) I just got too lax and didnt "want" to be medicated. I also drank too much some nights, which only made it all worse. Go slow! Break pills if you can too! I still have meds in my cabinet even though I dont take them anymore---just in case.
            Check out my blog on nature and nurture!
            http://thewoodsygal.com/

            Comment


            • #36
              Fingers crossed.
              "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.

              Comment


              • #37
                I love my dog too. He earns all the grain free kibble and steak scraps he could want and then some.

                It's very easy to feel like the drugs are being imposed on you. When I first started having seizures I was in college and it was the school medical center that dispensed the Tegretol that I had such nasty side effects with. When I told them how horrible it made me feel, they basically told me to be a good little girl and take my pills or they were going to call the DMV and have my driver's liscence yanked. This is despite the fact that they knew I only have seizures in my sleep. Grrrrrr.
                So I took the pills until graduation and then tossed them in the nearest bin and just went unmedicated. I kind of went through a pissed off at the world phase then, too much partying etc.

                I did have a party at my house last night and had a couple of glasses of wine (one should be my limit). That was probably a factor that wasn't helping any last night. Have you been told to limit alcohol?

                Comment


                • #38
                  I was told years ago , before I was even of drinking age, that alcohol would interfere with my meds and could potentially induce seizures.

                  I was told my license would get yanked as well...so it was definitely a scare tactic to help me stay medicated (but I wasnt driving my first three years of college---no car access---so I think I threw caution to the wind.) I never got my license pulled cause I didnt report those instances, just started taking my meds again.
                  Check out my blog on nature and nurture!
                  http://thewoodsygal.com/

                  Comment


                  • #39
                    Originally posted by solstice View Post
                    I was told years ago , before I was even of drinking age, that alcohol would interfere with my meds and could potentially induce seizures.

                    I was told my license would get yanked as well...so it was definitely a scare tactic to help me stay medicated (but I wasnt driving my first three years of college---no car access---so I think I threw caution to the wind.) I never got my license pulled cause I didnt report those instances, just started taking my meds again.
                    I had a great neuro at Kaiser here for years that believed that nighttime seizures did not need to be reported to the DMV because, even though they are legally obligated to report every *loss of consciousness*, he said you can not lose that which you don't have and so technically you are not conscious while asleep so you didn't lose anything.

                    So I thought this was Kaiser's policy. My neuro retired and they gave me a new one. The first (and only) time I reported a seizure to her, she notified the DMV and I had to got through this idiotic process to get my license back. I had to take the written test and do the in the car test again. What exactly does me proving that I know how to parallel park and use my turn signals appropriately have to do with having a seizure????

                    It's such a stupid system where you can't even be open with the person who could possibly be helpful to you. I was angry at the new neuro and explained to her, "You do realize that this means that I will never tell you anything ever again?" She is young and hides behind, "those are the rules". Such a stupid system.

                    Comment


                    • #40
                      I had some good neuros over the years...one wanted me to go off the meds and said I could do it under HIS direction, so that if I were to seize he said he would cover for it and I would NOT lose my license. Despite that promise I still didnt want to go off of it...I didnt feel ready that time. (I was eating a rather SAD diet heavy in dairy in gluten, and perhaps that was actually the best choice at the time.)
                      Check out my blog on nature and nurture!
                      http://thewoodsygal.com/

                      Comment


                      • #41
                        Originally posted by JoanieL View Post
                        Fingers crossed.
                        Thank you, Joanie. I appreciate it.

                        Originally posted by solstice View Post
                        I had some good neuros over the years...one wanted me to go off the meds and said I could do it under HIS direction, so that if I were to seize he said he would cover for it and I would NOT lose my license. Despite that promise I still didnt want to go off of it...I didnt feel ready that time. (I was eating a rather SAD diet heavy in dairy in gluten, and perhaps that was actually the best choice at the time.)
                        Now that's an awesome neuro. I know what you mean about "feeling ready". I'm finally feeling that way. I feel like I have all the damages from my cancer healed up and in the past, I've lost all the weight I want to lose and am maintaining nicely. With what I've been learning about keto, it just seemed like the right time to give it a try.

                        Comment


                        • #42
                          You are inspiring me to continue to work on my own diet/lifestyle!
                          Check out my blog on nature and nurture!
                          http://thewoodsygal.com/

                          Comment


                          • #43
                            Originally posted by Paleobird View Post
                            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.
                            well thanks. i do deal with a fair few seizures... for my students that have grand mal/diastat i have a class nurse as legally i'm not allowed to administer it. kids with autism are something like 40% more likely to develop epilepsy than the "normal" population, which i believe hovers around 5%- but kids with autism- especially boys, are more likely to develop it around puberty or beyond. i educate the parents about dietary changes that have shown beneficial, but most are so drained from their child at home the idea of changing diet is unthinkable to them.

                            loooove my job. today is the first day of school... It is time for some change related chaos yes san diego- im up in north county coastal. love it here!

                            Comment


                            • #44
                              You might be able to direct any of the parents that can still think straight to the AtkinsForSeizures.com website. It is a support group of mostly parents dealing with epileptic children through diet. Lots of helpful suggestions there.

                              Seriously, if I were catholic I would be submitting your name for sainthood. Have fun at school.

                              Comment


                              • #45
                                Originally posted by Paleobird View Post
                                I appreciate the offer. They have avery long waiting list to get into their study group and they only take people for whom medication is not effective so I don't qualify. The drugs do work for me but I'm concerned about the long term effects.


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

                                Comment

                                Working...
                                X