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Thread: My Epilepsy Experiment. Anyone else have seizures? page 7

  1. #61
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    Quote Originally Posted by Caz1969 View Post
    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.
    Yes. You are going through a lot of metabolic changes right now. Get things on an even keel before fiddling with meds. Check in with results.

  2. #62
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    Just an update. My neuro wanted to check my medication blood levels and the results are in. Smack dab in the middle of the right parameters at a 25% lower dose. Pretty cool.

    One thing possibly influencing this. Those prescriptions were written when I was 65 pounds heavier than I am now.
    Perhaps the keto protocol helps the pills to metabolize more fully as opposed to storing some of it away in fat cells.
    Also possible, there could be some stored away already that is coming out with weight loss that is augmenting the oral dose.

    All of the above is rank speculation of course and the truth is probably some combination of the three. Interesting stuff.

    I have another medication change coming in February when my post cancer meds run out. That is a hormone blocker so there may be a bit of a metabolic adjustment there. I think I will wait until that has settled down to do any more fiddling with my epilepsy meds.

  3. #63
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    I am very interested in this n=1 experiment of yours. My dad is epileptic, grandmal seizures (anytime of the day), been on tegratol for years and then various others. Then he went off meds for a number of years with the docs help and just recently had another seizure. They are going to be moving close to us soon and I am planning on challenging both Mom and Dad to try the primal lifestyle to see how it impacts their health issues. Of course it is not easy getting them to try anything I recommend - but since we have to foot the medical bills I think we get a say, don't you? I am going to watch this thread closely for more information and to see how you go on this! Good luck figuring all this out and I really hope you are able to get off those meds completely eventually!
    Start weight: 225.5 lbs Feb 13 2012. Height: 5'7"
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    "I shall be telling this with a sigh somewhere ages and ages hence: Two roads diverged in a wood, and I - I took the one less travelled by, and that has made all the difference." Robert Frost.

  4. #64
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    I think I've stayed ketogenic for the last few weeks. I've felt fine until recently (PMS). I think I have another ovarian cyst and am having a lot of hip pain (Had hip surgery when I was an infant...for an arthritic hip). Just praying keto isnt aggravating this and it's merely my reg. hormonal rollercoaster (likely due to an anovulatory cycle).

  5. #65
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    Quote Originally Posted by Coll View Post
    I am very interested in this n=1 experiment of yours. My dad is epileptic, grandmal seizures (anytime of the day), been on tegratol for years and then various others. Then he went off meds for a number of years with the docs help and just recently had another seizure. They are going to be moving close to us soon and I am planning on challenging both Mom and Dad to try the primal lifestyle to see how it impacts their health issues. Of course it is not easy getting them to try anything I recommend - but since we have to foot the medical bills I think we get a say, don't you? I am going to watch this thread closely for more information and to see how you go on this! Good luck figuring all this out and I really hope you are able to get off those meds completely eventually!
    Thank you and I hope your Dad can find some relief as well. So far so good but this has to be a gradual process. One not to be rushed.

    Quote Originally Posted by solstice View Post
    I think I've stayed ketogenic for the last few weeks. I've felt fine until recently (PMS). I think I have another ovarian cyst and am having a lot of hip pain (Had hip surgery when I was an infant...for an arthritic hip). Just praying keto isnt aggravating this and it's merely my reg. hormonal rollercoaster (likely due to an anovulatory cycle).
    I can't see how keto would aggravate a joint issue. I can see how inflammation due to a cyst could be aggravating that whole area and feel like hip pain. I don't know much about such cysts but can't they sometimes rupture?

  6. #66
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    Quote Originally Posted by Paleobird View Post
    Yes. You are going through a lot of metabolic changes right now. Get things on an even keel before fiddling with meds. Check in with results.
    What do you mean 'Get things on an even keel before fiddling with meds'?
    I'm wondering because as i've mentioned before, i get seizures as well, and do not take meds...but have gone to drs and i may decide to start. I have kept a calendar of when i get my seizures and my dizzy spells...they tend to occur monthly during sleep...but throughout the month i get lots of dizzy spells while awake. I have done MRI and 48hr EEG...the MRI was normal, but the EEG showed temporal spikes which likely explain those dizzy spells. When my seizures first began in 2006, it was like 1 a year, but in the past year, they tend to occur monthly (as well as those dizzy spells).
    I do have low vitamin D...in the past was taking prescription vit D but haven't been for several months now. I have wanted to get on vit B as well, but it is tough convincing drs about that...why?
    So now i am considering the meds...so when you mention to get things on an even keel...what do you mean? By the way, i haven't exercised regularly in over a year. I have been on paleo for about 2months. I'd appreciate any input

  7. #67
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    Quote Originally Posted by kiks View Post
    What do you mean 'Get things on an even keel before fiddling with meds'?
    I'm wondering because as i've mentioned before, i get seizures as well, and do not take meds...but have gone to drs and i may decide to start. I have kept a calendar of when i get my seizures and my dizzy spells...they tend to occur monthly during sleep...but throughout the month i get lots of dizzy spells while awake. I have done MRI and 48hr EEG...the MRI was normal, but the EEG showed temporal spikes which likely explain those dizzy spells. When my seizures first began in 2006, it was like 1 a year, but in the past year, they tend to occur monthly (as well as those dizzy spells).
    I do have low vitamin D...in the past was taking prescription vit D but haven't been for several months now. I have wanted to get on vit B as well, but it is tough convincing drs about that...why?
    So now i am considering the meds...so when you mention to get things on an even keel...what do you mean? By the way, i haven't exercised regularly in over a year. I have been on paleo for about 2months. I'd appreciate any input
    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.

  8. #68
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    Well, crap!

    Guess I need to report the failings as well as the triumphs so here goes.

    I have been doing really well with my seizure disorder as long as I stayed in nutritional ketosis. I was able to reduce my medication by 25% with no problems.

    Then some combination of the following happened:

    1)Too much "holiday cheer" in the form of wine, champagne, and chocolate
    2)I only drink decaf but I brew it by the pot and there is still some caffeine so I figure I'm getting about a cup or two worth out of a whole pot. This is still too much for my brain I think.
    3)I'm cleaning out my pantry and freezer in anticipation of moving soon. Plus I'm contemplating going full-on carnivore so I'm using up things like frozen fruits and veggies. So I think my fat intake has gotten short shrift lately. Not good.
    4)I've been staying up too late on the net and getting my circadian cycle all whacked out.

    I have had several nights this past week where my sleep was disturbed by having a pre-seizure aura which wakes me up with a start. This has been happening several times a night sometimes. (I have a particular kind of seizure disorder that only happens during sleep.) Then last night I had a seizure. Just a small one and I didn't lose consciousness but I still bit my tongue (which now hurts like a sonofabitch!) The day after a seizure is always a zombie day.

    OK. Plan of action

    1)I hereby officially and completely quit drinking even for those rare "special occasions".
    2)No more coffee of any kind. Going strictly rooibos or hibiscus tea from now on.
    3)Make a conscious effort to get the fat in me. (Today I went and bought labne, crema Mexicana, GF raw butter and cream, and coconut cream)
    4)If you see me posting after 10 pm feel free to wag your finger at me and tell me to go to bed.

    I feel like I've had a "slap upside the head" which may be what I needed to get back on track.

  9. #69
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    I can't believe I haven't posted in here yet.

    Never had a seizure to speak of Birdy. But I am (as I think you know), on the autistic spectrum. The research for ketosis as an excellent way to manage epilepsy has started to mount and has been slowly trickling into other neurological disorders (technically speaking, while autism manifests itself largely in the brain of individuals it's a developmental disability, not a brain disorder). But it is still very much related to other neurological issues in many ways and the research into them may still be somewhat relevant here. There's not yet a lot of long-term evidence that ketosis can necessarily help an Aspie like me, but... I do see the evidence that ketosis has profound effects on the brain to be quite exciting. There may eventually come to be no evidence at all, or even evidence that ketosis is BAD for autistic individuals, but I am becoming more and more interested in finding out just what effects ketosis has on the brain's function and whether or not any of these effects could be utilized to the benefit of autistic individuals.
    Last edited by Drumroll; 01-06-2013 at 05:31 PM.

  10. #70
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    Quote Originally Posted by Drumroll View Post
    I can't believe I haven't posted in here yet.

    Never had a seizure to speak of Birdy. But I am (as I think you know), on the autistic spectrum. The research for ketosis as an excellent way to manage epilepsy has started to mount and has been slowly trickling into other neurological disorders (technically speaking, while autism manifests itself largely in the brain of individuals it's a developmental disability, not a brain disorder). There's not yet a lot of long-term evidence that ketosis can necessarily help an Aspie like me, but... I do see the evidence that ketosis has profound effects on the brain to be quite exciting. There may eventually come to be no evidence at all, or even evidence that ketosis is BAD for autistic individuals, but I am becoming more and more interested in finding out just what effects ketosis has on the brain's function and whether or not any of these effects could be utilized to the benefit of autistic individuals.
    Well I know that the research into pediatric epilepsy using ketosis has turned up an unexpected but nice side effect of greatly reducing ADHD in kids.

    Given that the brain is mostly comprised of fat and that myelin, the neural sheaths, is made of fat, it makes sense that adequate fat in the diet would play a role in these disorders.

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