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My Epilepsy Experiment. Anyone else have seizures?

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  • #91
    I SO do not want to be a member of this club, but I have subscribed to this thread. My Third had her first seizure on Wednesday morning. We spent two days at the Clinic just to check her out from stem to stern. Peds neurologist told me that in reading her EEG she is "disposed to having more", so I am not calling it much of anything until/if she has another one.

    I am kinda pissed, because she has been SCD diet for 7 years now, and I Primalized her fatty acid sources back in June 2012, one month after I started Primal, because I could see and feel the positive changes in myself. For what I put her on the SCD for, and also the positive effects of Primal fat sources, it all has been a resounding success, so no complaints there. She just finished her first period at the beginning of this month, and now - boom. I have been loosely following Paleobird and her seizure thing, and was just chugging along happy that I dodged that too-common bullet in the special needs population she belongs to, and feeling actually quite bullet-proof for her - until Wednesday.

    So I will be checking here more often, if for no other reason than to hear the stories of all of you who are on meds and all, just to have a window on that world, should that be our future.
    I have a mantra that I have spouted for years... "If I eat right, I feel right. If I feel right, I exercise right. If I exercise right, I think right. If I think right, I eat right..." Phil-SC

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    • #92
      Oh, Damn! Crabbcakes, I'm so sorry.

      Pull up the AtkinsForSeizures website. I know people around here like to rag on Atkins but they are partnered up with Johns Hopkins in some of the most thorough research anywhere in the world on this subject. The website is mostly by, for and about parents dealing with your situation. It doesn't help me very much but it might do you some good.

      [[[[[[[[[Hugs]]]]]]]]]

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      • #93
        I have had several seizures in my life but have never been diagnosed epileptic. This has been really informative. It is amazing how diet can impact such a very serious problem. Best regards to your child, Crabbcakes. I can't imagine how hard that must be.

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        • #94
          Welcome, Meg. I was just reading your other thread about eating disorders. Were your seizures perhaps related to electrolyte imbalances due to the binge/purge extremes? How many have you had and how old were you?

          I wonder if the extreme lack of fat involved in such extreme dieting could also have a negative impact on brain functions.

          BTW, kudos on overcoming such a disorder and getting back on track. My sister nearly died of anorexia/bulimia many years ago. My apologies for bringing it up here but there could be interesting connections between the two.

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          • #95
            Originally posted by Paleobird View Post
            Welcome, Meg. I was just reading your other thread about eating disorders. Were your seizures perhaps related to electrolyte imbalances due to the binge/purge extremes? How many have you had and how old were you?

            I wonder if the extreme lack of fat involved in such extreme dieting could also have a negative impact on brain functions.

            BTW, kudos on overcoming such a disorder and getting back on track. My sister nearly died of anorexia/bulimia many years ago. My apologies for bringing it up here but there could be interesting connections between the two.
            I think so. There were only about 6 of them total in my life (all from ages 15-18) with many fainting spells, but they hooked my brain into a machine and flashed lights at me and said I didn't have epilepsy. I do think lack of fat in the brain must have cause it, since adding fat to the brain helps it.

            Thank you, and best wishes to your sister. Being alive at 26 shouldn't be a big accomplishment, but for me it is.

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            • #96
              Well, just an update. I've been off the cancer meds for about six weeks now so I'm starting to think about dropping the seizure med dose a bit more. I've had a couple more incidents of missing my meds entirely for a night and feeling fine.

              I wonder if it is better to cut back the dose a bit (maybe get out the pill splitter) or if maybe it is better to just plan say one day a week as a "pill holiday". I wonder if a day off the pills might give the body more of a chance to clean out periodically. Then again the up and down of the blood levels could be stressful.

              Thoughts anyone?

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              • #97
                So, with the cancer meds cleared out of my system, I decided to cut back on the Valproic Acid I take by 25%, 3 pills instead of four nightly. A week into this next phase of the experiment and no problems at all. Sleeping well, no seizures, no auras.

                That make a total of 25% down on both my Phenobarbitol and my Valproic Acid.

                When I was taking the cancer meds and the full dose of seizure meds, I had NINE pills every night. Now I only have SIX.

                I like it.

                There is a lot in the literature about ketogenic protocols actually being able to CURE people particularly youngsters of epilepsy. How awesome would that be?

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                • #98
                  That would be pretty damned awesome.

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                  • #99
                    Originally posted by Paleobird View Post
                    So, with the cancer meds cleared out of my system, I decided to cut back on the Valproic Acid I take by 25%, 3 pills instead of four nightly. A week into this next phase of the experiment and no problems at all. Sleeping well, no seizures, no auras.

                    That make a total of 25% down on both my Phenobarbitol and my Valproic Acid.

                    When I was taking the cancer meds and the full dose of seizure meds, I had NINE pills every night. Now I only have SIX.

                    I like it.

                    There is a lot in the literature about ketogenic protocols actually being able to CURE people particularly youngsters of epilepsy. How awesome would that be?
                    That would be extremely awesome!

                    Crabcakes, I missed your earlier post. How is your daughter doing?
                    "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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                    • My epileptic onset was when I was 23... I'm 29 now. I was prescribed Keppra (Kepprage) 2000mg a day. I was fine for years, no seizures, and then July of last year >BAM< a breakthrough seizure. So my neuro bumped me up to 3000mg a day. My seizures are grand mal tonic clonic, except I don't lose consciousness until the seizure has traveled from my feet or navel (jacksonian march) to my head, so I FEEL an immense amount of pain and I am terrified of them for that reason. They're mainly nocturnal so thank the Lord for that... but I'd really rather be seizure free. I found that ketosis has definitely helped my seizure activity, one of my auras/partial onsets is a left arm tremor and those have rapidly declined, thank the Lord. I'm sleeping better also, I used to wake up 3 to 4 times a night and now I sleep the entire 8 to 10 hours I need.

                      I also think my idiopathic hypersomnia was caused by carb overloading... I really took a hard look at what I was eating around the time of my breakthrough seizure and it was nothing but grains and processed crap. My IH would make me tired, sleep would aggravate my seizure disorder, but if I didn't get enough sleep it would also aggravate my seizures/auras/partials... it was a viscous cycle. My best friend in the universe (<3 Kim) recommended eating Primal and after listening to her nag me for about 3 months I decided to try it. Wouldn't ya know, I saw some improvement. Whodathunk. Duh.

                      My neuro wants to do another VEEG and keep me for 3 to 5 days while he pulls me cold turkey off my medication so he can record and witness one of my seizures... but that's like asking me to jump off a cliff... my reaction was, "NO WAY!" Followed by tears. He recommended that back in January and I still haven't warmed up to the idea... what I need to do is completely eliminate (as much as I can control - not the environment) all of the toxins going into my body, including cigarettes, because those can't help. They just can't.

                      I have the hope that with eating primal, ketosis, and quitting smoking that this will be a hard lesson learned to treat my body as a temple... I never started eating Primal for the weight loss, I started for the health benefits. I need to take advantage of that because I ain't getting any younger. I also read that seizures are a side effect of smoking cigarettes (due to the chemicals) and also a side effect of Celiac's Disease... I won't go so far as to say I have CD, but I definitely am allergic to gluten... that was proven to me after eating Primal for a month and then unknowingly eating something with cornstarch in it. Ugh.

                      I hope I'll have different news in a future post, but as of now I am still on 3000mg of Keppra a day and have been seizure free for 9 months to the day. That's my story, or all I can remember right now (side effect of Keppra: memory loss, another reason to get off of it).

                      <3 Shade

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                      • hi Shade, welcome to the forum. How long have you been eating primal? If it hasn't been too long, i would suggest to keep up with the primal eating for a few months, and perhaps then lowering your dose gradually. I am not liking the cold turkey idea myself considering you are taking a high dose...remember, you make the final decision, not the dr. If you don't like your dr, go to someone else...it can't hurt.

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                        • Originally posted by kiks View Post
                          hi Shade, welcome to the forum. How long have you been eating primal? If it hasn't been too long, i would suggest to keep up with the primal eating for a few months, and perhaps then lowering your dose gradually. I am not liking the cold turkey idea myself considering you are taking a high dose...remember, you make the final decision, not the dr. If you don't like your dr, go to someone else...it can't hurt.
                          Hiya Shade, thanks for joining us. Yes, I would agree with kiks about backing off the meds gradually. It sound like your doctor is using you for a lab rat there, trying to get yo to have a seizure as a command performance. I would say, "No way."

                          And yes, all toxins must go. That means the cigs, any caffeine, booze, any fake colors/sweeteners/additives/flavorings. All of it. Total body clean out. A lot of people can get away with a lot of things when they are young and healthy. People who have brains that are susceptible to epilepsy have to be more careful.

                          Keep us posted on how you are doing. You may not need that large a dose (you may not need any) but going cold turkey on the meds is a big stressor. I really wouldn't say that a neuro who advocated that knows what they are talking about.

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                          • Another side effect of lowering my intake of meds seems to be that I can get away with eating more food. I think my metabolism is kicking into a higher gear. Feels good.

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                            • that's great, Paleobird

                              Here's an update on me - i have been taking meds for my seizures since October. I have felt better overall in general, but i did have a seizure yesterday. It happened while awake but i did lie down when it happened. I was so tired the rest of yesterday and slept a lot. I am getting over a cold (runny nose, sneezing, achy left back side). I did have lots of sweets this past weekend. I did get one last month (4 weeks prior exactly). I did have sweets before that one as well. I have a calendar which i write how i feel, etc and I see i had sweets and was craving sweets both times. I have to be diligent to cut out the sweets.

                              I do plan to call my dr...Does anyone have recommendations about what types of tests to look into? I do have low vit D, and do take OTC pill for that...

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                              • Originally posted by kiks View Post
                                that's great, Paleobird

                                Here's an update on me - i have been taking meds for my seizures since October. I have felt better overall in general, but i did have a seizure yesterday. It happened while awake but i did lie down when it happened. I was so tired the rest of yesterday and slept a lot. I am getting over a cold (runny nose, sneezing, achy left back side). I did have lots of sweets this past weekend. I did get one last month (4 weeks prior exactly). I did have sweets before that one as well. I have a calendar which i write how i feel, etc and I see i had sweets and was craving sweets both times. I have to be diligent to cut out the sweets.

                                I do plan to call my dr...Does anyone have recommendations about what types of tests to look into? I do have low vit D, and do take OTC pill for that...
                                I don't care how much DerpaZach and the other Peatarian sugar bees like to mock Dr. Lustig. He is right about sugar being poisonous especially to those of us with epilepsy.

                                A few days ago I had a very nice date and was in one of those "what the heck, this is a special occasion" moods. So, I had a couple of mimosas and a piece of chocolate decadence for dessert. Sure enough, that night I woke up with a pre-seizure aura about 4am and was too scared to get back to sleep that night.

                                You also had the doubly whammy of sugar plus your body already being under the stress of fighting off a cold.

                                The sweets are just not worth it.

                                I'm so sorry you had to go through that again. I know that "been hit by a bus" feeling the day after a seizure all too well.

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