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My Epilepsy Experiment. Anyone else have seizures?

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  • Originally posted by Paleobird View Post
    I totally agree. Can I prove it? No. Do I care? No. It's working for me.
    That is what has kept my dad and his nearly vegan wife from getting on my case about the (to them) cringe-worthy amount of fats my husband and I have been eating recently. They can't dispute the leaps and bounds of progress in my health and my husband has noticeably slimmed down.
    Primal Journal

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    • Cryptocode & Panthera,

      FWIW - My inlaws breed and raise dogs and decided that they would try making their own w/o any fillers, using just meat and veggies. One of the dogs had been having seizures and these stopped right away and never came back.

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      • Originally posted by Gardengal View Post
        Cryptocode & Panthera,

        FWIW - My inlaws breed and raise dogs and decided that they would try making their own w/o any fillers, using just meat and veggies. One of the dogs had been having seizures and these stopped right away and never came back.
        That's awesome.

        I had a friend who had a dog with epilepsy and I used to feel so sorry for that poor dog. At least, as a person you sort of understand what is happening to you. It got so bad he had to put his dog down.

        I wish I had know about this back then.

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        • I just wanted to let you how great it is to see you writing about this. When I was on the MAD diet and going off my meds (2007) there were no sites for adults for this kind of diet. The only sites were for parents of kids and no in depth info on Ketogenic diets anywhere. No doctors, beyond Dr. Kosoff at Johns Hopkins, knew about it, so I was pretty much on my own.

          I've been off MAD now and back on Tegretol for a few years and need to back on it for my health. I really did feel better and I need to lose the weight I've gained.

          It's good to see you making progress with reducing the meds. The end is in sight! I'll be checking back often.

          Jan
          Gardengal
          Last edited by Gardengal; 06-09-2013, 06:03 PM.

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          • Originally posted by Gardengal View Post
            I just wanted to let you how great it is to see you writing about this. When I was on the MAD diet and going off my meds (2007) there were no sites for adults for this kind of diet. The only sites were for parents of kids and no in depth info on Ketogenic diets anywhere. No doctors, beyond Dr. Kosoff at Johns Hopkins, knew about it, so I was pretty much on my own.

            I've been off MAD now and back on Tegretol for a few years and need to back on it for my health. I really did feel better and I need to lose the weight I've gained.

            It's good to see you making progress with reducing the meds. The end is in sight! I'll be checking back often.

            Jan
            Gardengal

            Thanks, Jan. Your input is most welcome. Let us know how things go if you decide to make a change. I had awful side effects from Tegretol but I guess every body is different in how they react to those things.

            You're right that so much of the early research was all about pediatric epilepsy. Doctors still don't really see the point in trying nutritional therapy as long as the pills are working.

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            • just providing an update...to summarize, i had my first seizure at age 27 (in 2006). Initially i would get about 1 seizure a year. In the past 2 years they increased in frequency, about one a month and always during sleep. I started keeping a calendar of my seizures and my periods for the past 2 years (also colds, etc). I did begin taking meds in Oct 2012. It did stop the seizures for several months, but then they started again in the Spring....and they were happening at ovulation (2 weeks before my period) and not during sleep any longer. To me this is pretty consistent with hormonal fluctuations. Anyway, I went to my neuro and we upped the dose for now. So far so good, no seizures in over a month. But I am on a mission to try to figure out what triggers them and if there are other ways of keeping the seizures at bay. But I am grateful to have my calendar log for 2+ years now; I can refer back to it and see trends.

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              • Originally posted by kiks View Post
                just providing an update...to summarize, i had my first seizure at age 27 (in 2006). Initially i would get about 1 seizure a year. In the past 2 years they increased in frequency, about one a month and always during sleep. I started keeping a calendar of my seizures and my periods for the past 2 years (also colds, etc). I did begin taking meds in Oct 2012. It did stop the seizures for several months, but then they started again in the Spring....and they were happening at ovulation (2 weeks before my period) and not during sleep any longer. To me this is pretty consistent with hormonal fluctuations. Anyway, I went to my neuro and we upped the dose for now. So far so good, no seizures in over a month. But I am on a mission to try to figure out what triggers them and if there are other ways of keeping the seizures at bay. But I am grateful to have my calendar log for 2+ years now; I can refer back to it and see trends.
                Hi kiks,
                Refresh my memory. You were trying the ketosis method, right? Have you logged that wrt your seizure activity?

                I'm glad you seem to be getting a handle on the situation.

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                • Hi Paleobird,
                  I forgot to mention that i started paleo a year ago now. Before i started the paleo way of eating, i was 30lbs heavier and i had a lot of brain fog in the previous 2 years. I needed to do something and that's when i came across this website. So I became proactive and started watching what i ate, and making sure i was sleeping well. I lost the weight and also my brain fog went away! I have been able to maintain the weight loss. And yes, i guess i was doing a ketogenic type of eating...i haven't been totally diligent with it, but what i put in my body is a million times better than before. I do track what i eat on the LoseIt app and have been tracking for over a year.
                  I am so grateful that the brain fog went away...also for the weight loss as well. Now i am slowly trying to increase my body strength...but more importantly, i am trying to figure out what may be triggering the seizures, since they have been happening at ovulation. Hopefully this med dosage works better.

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                  • One thing I found out was a trigger for me was alcohol. I could get a way with any one time having a few drinks but, when I had several of those in a row (new boyfriend, everything was a special occasion) like 3 or 4 nights in a week and, bam! I had a seizure.

                    I wonder how much of this was the alcohol itself and how much of it was being knocked out of ketosis ("special" dinners with desserts, etc.)

                    I've decided to go completely booze free.

                    Also completely caffeine free, not even decaf which still has some caffeine and, since I tend to drink it by the pot not the cup, it adds up. I've been drinking Teeccino lately and really like it.

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                    • i have drastically reduced my alcohol consumption in the past year or two. Now i might have a glass a wine or a bottle of light beer, and it adds up to no more than 3-4 a month, no hard liquor at all. (Before i could drink anyone under the table).
                      I have never been a big coffee drinker; i do love the flavor but i avoid it because the caffeine affects me so much. I do have teechino and i'll make a pot if i have an urge for coffee flavor, but that really is less than once a month.

                      But every now and then i do cheat and have a dessert, and that probably knocks me out of ketosis i'm thinking...i know a few times that i had seizures, the day before i did crave and eat sweets.

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                      • Yep, these are the correlations that it would be interesting to document.

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                        • Hi every one just found this thread well researching alternate method for seizure control as i have had two seizures this year, the first resulting in my death for a few minutes. When revived and taken to the hospital my heart was out of control and a cardioversion was preformed on me to restart my heart in its natural rhythm. all the standard test and scans were taken all coming back negative for epilepsy or other brain abnormality. The doc's thought it was a once in a life time event but recently as in a few weeks ago i woke up in the hospital again and still they persist that there is nothing wrong with me. The neurologist now wants me to take lamatical just in case...and that the only side affect i should worry about using this drug is a potentially lethal rash and slight memory loss...some thing which i would rather not experience for a prolonged period of time.

                          As for me i have been primal for over a year now and have lost over a 100lbs,actually dont think i have ever been this healthy. Both seizures happened with in one hour of waking, the first two days after a rather nasty oil burn on my hand and a little to much whisky to numb the pain. the second happened after a staff party in which i eat more then a few things a shouldn't have, drank a little more beer then usual and only a few hrs sleep between the party and work, all of which i know are bad even under normal situations ahah.

                          Now i am rather resistant (ok stubborn as the mountains outside my window actually haha) to the idea of taking drugs for anything i dont even like taking aspirin or Tylenol but i now have two doctors the neuro and my family doc saying i should get on the drugs "just in case" for the rest of forever. so that being said i was wondering if you think just cleaning up my act a little more and going keto would be idea or should i take the drugs for awhile as well and tighten up my act.

                          any input would be much appreciated
                          Thanks

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                          • The 2nd last post in this thread was well over a year ago. Hope the original posters have more to add, as I have a near and dear relative who had her second seizure the end of Dec 2013. Her first one was 30 years ago as a toddler, accompanying a high fever. But she is also the only one of 6 siblings to ever have a seizure at any age.
                            My input, FWIW, is try the meds. You can't get any worse results from meds than from waking up dead!;-)

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                            • Originally posted by Ryanmar333 View Post
                              Hi every one just found this thread well researching alternate method for seizure control as i have had two seizures this year, the first resulting in my death for a few minutes. When revived and taken to the hospital my heart was out of control and a cardioversion was preformed on me to restart my heart in its natural rhythm. all the standard test and scans were taken all coming back negative for epilepsy or other brain abnormality. The doc's thought it was a once in a life time event but recently as in a few weeks ago i woke up in the hospital again and still they persist that there is nothing wrong with me. The neurologist now wants me to take lamatical just in case...and that the only side affect i should worry about using this drug is a potentially lethal rash and slight memory loss...some thing which i would rather not experience for a prolonged period of time.

                              As for me i have been primal for over a year now and have lost over a 100lbs,actually dont think i have ever been this healthy. Both seizures happened with in one hour of waking, the first two days after a rather nasty oil burn on my hand and a little to much whisky to numb the pain. the second happened after a staff party in which i eat more then a few things a shouldn't have, drank a little more beer then usual and only a few hrs sleep between the party and work, all of which i know are bad even under normal situations ahah.

                              Now i am rather resistant (ok stubborn as the mountains outside my window actually haha) to the idea of taking drugs for anything i dont even like taking aspirin or Tylenol but i now have two doctors the neuro and my family doc saying i should get on the drugs "just in case" for the rest of forever. so that being said i was wondering if you think just cleaning up my act a little more and going keto would be idea or should i take the drugs for awhile as well and tighten up my act.

                              any input would be much appreciated
                              Thanks
                              Lack of sleep and alcohol both lower the seizure threshold, but that sort of thing doesn't often happen unless something else is wrong. Have you been taking any recreational drugs? (I know, probably not.)

                              I definitely would follow the advice of the doctors. Seizures are scary, and I've had dozens. Pretty sure the seizures affected me worse than the the medications (once I found a good one). Other people here may disagree, especially considering they don't think you have epilepsy. The medications can be scary I know. If you have problems with the lamictal you can always switch to something else at least. If it keeps us free of seizures though it definitely seems worthwhile.

                              If you do quit the medication, don't do anything dangerous for a while. Like drive.
                              Music of the day/week/month/whatever:

                              K.A.A.N. - L.T.N. https://www.youtube.com/watch?v=kWocmse1Ef4

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