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My Epilepsy Experiment. Anyone else have seizures?

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  • Wow, I’m so glad I found this thread. I also had nighttime seizures starting at puberty. I was put on Tegretol first, until I developed a rash. They took me off it, and I started having seizures again until they put me on Dilantin. They then weaned me off of Dilantin, and I’ve been seizure-free since. I was weaned off of it around 15, I think.

    Like Shade, mine started at my feet and worked their way up (I didn’t know that was called Jacksonian March!). Mine were also horribly painful, like pins and needles multiplied by 100. Once I started to feel them coming on, I had time to scream before my scream turned into a gurgle and I was stuck, conscious, listening to my family watch over me while I convulsed. I remained conscious the whole time.

    I’m with you Shade, I would never want the doctor to try to make one happen. They are not pleasant and very scary. Sometimes my husband will try to help me fall asleep by telling me to totally relax my body and mind and feel all floaty. I can’t do it, because that was always the condition I was in before I had a seizure start. I don’t know if that was an aura or not… I hadn’t heard about auras until reading this thread!

    I’m now pregnant, and one of my doctors told me that, if there ever was a time for me to start having seizures again, it would be now, since my hormones are going crazy again. So far, I haven’t had any, but I have had the floaty feeling a few times at night (which I promptly woke all the way up—I’m glad to know that stops seizures for some people! I had no idea if it worked…). I also have had lots of dizzy moments throughout the day, which I just attributed to having a hard pregnancy, but now I wonder if it’s seizure related, as it is for some of you.

    I also didn’t know autisim and epilepsy were correlated together. Since my husband and I both seem to land on the autistic spectrum, and both my mom and I had seizures (she as an infant, me as a teenager), chances are pretty high my child will as well. I definitely want to be prepared and do everything I can to prevent them from having seizures!

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    • Hi, Aldergirl and thanks for joining us.

      I continue to be surprised by how many people have night time sleep seizures.

      Tegratol was nasty. Never tried Dilantin. Given that you were fairly young (you said you got off Dilantin at 15, when was the first one?) you may very well have done what the neuros call "outgrowing" your seizures. If so, that is awesome for you and for the new Grokling on the way.

      The dizzy moments you have had may not have anything to do with your seizures. They may just be blood sugar dips or those "crazy" hormones. Also dehydration could be a factor.

      Yep, when they treat for epilepsy with a ketogenic diet, autism improves too along with ADD/ ADHD.

      Nora Gedgaudas has done some amazing work with her patients many of whom are autistic.

      Epilepsy and migraine headaches also correlate. I used to get migraines but I don't anymore.

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      • Took Third to a follow-up with her peds neurologist. Nice doc - gentle as a teddy bear, is from South Africa so the accent is cute, totally takes time to have a real conversation, and whip-smart - I have always liked him. Anyway, like all things Third, her test results were mixed - the EEG results said rolandic seizure (sometimes aka focal seizures of childhood) but the actual seizure manifestation said partial-complex. I was wondering if this is not an unusual experience with you all: EEG and actual seizure being from two different seizure classes/types??
        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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        • Paleobird, I think my first seizure was sometime between 12 and 13. Looking back, it seems like such a short time between when I started having them and when I was done, though it seemed an eternity at the time. I don’t actually remember when exactly I was weaned off my meds, either, except that it was done in time for me to get my driver’s permit without having to worry about seizures and driving.

          They never did figure out why I had them, either. I had the CT scan, multiple MRIs (really fun when I had braces, too) and EEGs, but they never knew the cause. They said it was hormones and I “outgrew” them, of which I am very thankful.

          Hopefully my dizziness is really just pregnancy hormones—I drink tons of water. I’ve been having such a difficult pregnancy for having “done everything right,” and I just don’t know why. My mom had a very easy pregnancy and labor (never had morning sickness, popped us right out, etc), and I’ve been primal for years—liver, heart, bone broth and all. It’s been so annoying being so nauseous and weak and dizzy. For two months I couldn’t stand the smell of meat. I’d have to hide in the bedroom with the door closed for hours while Knifegill cooked himself steak, bacon, eggs, fish, or pork spleen. Sigh, so much for being primal and pregnant! The amount of cheese and rice pasta I ate was insane and very sad.

          Anyway, our kids will be very primal—and ketogenic, if necessary—once they enter into the world. Hopefully that will solve any problems that pop up--I just wish being primal made my pregnancy easy!

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          • Originally posted by Crabbcakes View Post
            Took Third to a follow-up with her peds neurologist. Nice doc - gentle as a teddy bear, is from South Africa so the accent is cute, totally takes time to have a real conversation, and whip-smart - I have always liked him. Anyway, like all things Third, her test results were mixed - the EEG results said rolandic seizure (sometimes aka focal seizures of childhood) but the actual seizure manifestation said partial-complex. I was wondering if this is not an unusual experience with you all: EEG and actual seizure being from two different seizure classes/types??
            I have never heard of that. That is indeed unusual. But then I suppose every case of epilepsy is unique. I wish both you and Third well in dealing with this.

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            • Originally posted by Aldergirl View Post
              Paleobird, I think my first seizure was sometime between 12 and 13. Looking back, it seems like such a short time between when I started having them and when I was done, though it seemed an eternity at the time. I don’t actually remember when exactly I was weaned off my meds, either, except that it was done in time for me to get my driver’s permit without having to worry about seizures and driving.

              They never did figure out why I had them, either. I had the CT scan, multiple MRIs (really fun when I had braces, too) and EEGs, but they never knew the cause. They said it was hormones and I “outgrew” them, of which I am very thankful.

              Hopefully my dizziness is really just pregnancy hormones—I drink tons of water. I’ve been having such a difficult pregnancy for having “done everything right,” and I just don’t know why. My mom had a very easy pregnancy and labor (never had morning sickness, popped us right out, etc), and I’ve been primal for years—liver, heart, bone broth and all. It’s been so annoying being so nauseous and weak and dizzy. For two months I couldn’t stand the smell of meat. I’d have to hide in the bedroom with the door closed for hours while Knifegill cooked himself steak, bacon, eggs, fish, or pork spleen. Sigh, so much for being primal and pregnant! The amount of cheese and rice pasta I ate was insane and very sad.

              Anyway, our kids will be very primal—and ketogenic, if necessary—once they enter into the world. Hopefully that will solve any problems that pop up--I just wish being primal made my pregnancy easy!
              Oh, I didn't know you were Knifegill's better half . Congrats to both of you on the pregnancy. I'm sorry you are having a hard time of it but it may very well be those same pesky hormones.

              I am getting far fewer seizure since I passed menopause so I may have "outgrown" mine that way. I too got scanned six ways to Sunday and they can't find any reason and so they call mine "idiopathic" i.e. we don't have a clue but we're doctors so we can't just say that, we need a fancy term for it.

              Take good care of yourself during the next few months (When are you due?)

              If it's not TMI, can I ask if you had started your period at the point when you had your first seizure? Some women get them on a monthly basis. I'm wondering about the hormonal connection. That keeps coming up.

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              • Yep, Knifegill is my dear husband, and soon to be a daddy . He sure got harassed by all my co-workers when he cooked pork spleen during my morning sickness, lol! Our little one is due September 19th, and I’m happy to say I can finally stand the smell of meat again (except bacon—poor Knifegill gets no bacon… at least he’s doing steak and eggs!). All I want is steak right now, so maybe my body is compensating for the months of primarily rice and cheese…

                My period didn’t start until the summer before 8th grade, so I was 13 ½. It would have been around that time that I started having seizures. I know I was having them during eight grade, but I don’t know if they started early in the school year or later... Probably later, since I wasn’t having seizures when I broke my arm in 8th grade. I really should pin down that time frame! I really have no idea if my seizures correlated with my period, since mine was very irregular and very light all the way through 9th grade (probably due to me being an underweight stick), and my seizures were treated with medication instantly. The doctors always told me my seizures were hormone related, though...

                Thinking back made me remember that my sleep patterns changed when I started on my seizure medication. Before I had seizures, it would take me 2-4 hours to fall asleep every night, and I never really needed to sleep—I honestly didn’t know what it felt like to be sleepy! Ever since starting on my seizure medications, I’ve been able to fall asleep within 30 minutes usually…and I now know what it means to be sleepy. I don’t know if this was related to my seizures, the medication, puberty or just general aging.

                Has anyone else noticed sleep patterns (and energy level) being affected by the onset of seizures?

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                • Well, when I first started having seizures, I went through a really rough patch where I was having a lot of them plus waking up multiple times a night with pre-seizure auras. So, I was exhausted most of the time. But then I was also too scared to relax and go to sleep so I was relying on caffeine in the morning and alcohol in the evenings to keep going. Not a good combination.

                  Once I found the right meds, I got the other substances out of the picture and things improved dramatically. Since I am taking less medication now, I am finding it easier both to get to sleep and to wake up feeling clear headed.

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                  • Yikes. I’m sorry you had to go through that. I never had that many, and so the times that I had them, or felt I was going to have them, were still outweighed by the fact it only took me 30 minutes to fall asleep, versus four hours. I can definitely see how seizures would impact your sleeping negatively. I'm glad weaning off the meds is working out well for you!

                    I remember reading the side effects listed on the bottle, and one of them was “sleepiness,” and thinking at the time, “Oh, good, maybe I’ll get sleep now!” Yet, my ability to fall asleep persisted after I was off the medication, making me wonder if the medication re-arranged my mental pathways, like the doctors said my medication had permanently affected the pathways that causes the seizures. It makes me wonder, if, indeed, if the medication affected my brain permanently in that manner, what other ways did it affect my brain permanently?

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                    • Originally posted by Aldergirl View Post
                      Yikes. I’m sorry you had to go through that. I never had that many, and so the times that I had them, or felt I was going to have them, were still outweighed by the fact it only took me 30 minutes to fall asleep, versus four hours. I can definitely see how seizures would impact your sleeping negatively. I'm glad weaning off the meds is working out well for you!

                      I remember reading the side effects listed on the bottle, and one of them was “sleepiness,” and thinking at the time, “Oh, good, maybe I’ll get sleep now!” Yet, my ability to fall asleep persisted after I was off the medication, making me wonder if the medication re-arranged my mental pathways, like the doctors said my medication had permanently affected the pathways that causes the seizures. It makes me wonder, if, indeed, if the medication affected my brain permanently in that manner, what other ways did it affect my brain permanently?
                      One of the meds I take is Phenobarbitol which as its name implies is a barbiturate. So I think cutting back on that that does have something to do with being able to wake up easier in the mornings.

                      That is a scary thought. Also perhaps it wasn't the meds but rather your brain finishing its development. Even if you are "full grown" at 15, your brain continues to develop into your early 20s.

                      Unfortunately for me that was when mine started, at 22.

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                      • Originally posted by Aldergirl View Post
                        I remember reading the side effects listed on the bottle, and one of them was “sleepiness,”

                        <snip>

                        It makes me wonder, if, indeed, if the medication affected my brain permanently in that manner, what other ways did it affect my brain permanently?
                        Even though I have had seizures for effectively my whole life, I wasn't diagnosed with epilepsy until I was 13. The doctor tried varying dosages of Lamictal and Trileptal on me with no effect on the frequency of my seizures. When I complained to the doctor that I went from perfectly fine to falling asleep in classes I liked, he told me the drowsiness would go away when I got used to the medications. I weaned myself off medication at 17 when I started college and spent the next 9 years or so in a constant battle with sleep. Now, after about 9-10 months eating primally and tending towards low carb and ketosis, I still have some drowsiness but I no longer fall asleep running heavy machinery. It makes me hold hope that one day I'll be back to how I was before.
                        Primal Journal

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                        • Originally posted by Quies View Post
                          Even though I have had seizures for effectively my whole life, I wasn't diagnosed with epilepsy until I was 13. The doctor tried varying dosages of Lamictal and Trileptal on me with no effect on the frequency of my seizures. When I complained to the doctor that I went from perfectly fine to falling asleep in classes I liked, he told me the drowsiness would go away when I got used to the medications. I weaned myself off medication at 17 when I started college and spent the next 9 years or so in a constant battle with sleep. Now, after about 9-10 months eating primally and tending towards low carb and ketosis, I still have some drowsiness but I no longer fall asleep running heavy machinery. It makes me hold hope that one day I'll be back to how I was before.
                          Yep, the docs told me I would "get used to" the Tegratol they put me on which made me feel worse than the seizures. That seems to be their stock answer for any side effect complaint.

                          That's good news that the ketosis is helping, Q.

                          (Good to hear from you, BTW)

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                          • In some ways, I almost wish mine started later, so I’d have a better grasp of what was going on in my treatment and the doctors’ explanations. My current understanding of my seizures is limited to what a 15 year-old was able to grasp, something which I am now trying to remedy. I am, however, glad they were over with before they had a chance to mess with my adult life (driving, being able to swim, etc).

                            One of the meds I take is Phenobarbitol which as its name implies is a barbiturate. So I think cutting back on that that does have something to do with being able to wake up easier in the mornings.
                            I had to look up barbiturates, and they look like scary stuff. I can definitely see why you’d want to be off of Phenobarbitol, and why you’d have more energy as you wean yourself off of it.

                            Originally posted by Quies View Post
                            Even though I have had seizures for effectively my whole life, I wasn't diagnosed with epilepsy until I was 13. The doctor tried varying dosages of Lamictal and Trileptal on me with no effect on the frequency of my seizures. When I complained to the doctor that I went from perfectly fine to falling asleep in classes I liked, he told me the drowsiness would go away when I got used to the medications. I weaned myself off medication at 17 when I started college and spent the next 9 years or so in a constant battle with sleep. Now, after about 9-10 months eating primally and tending towards low carb and ketosis, I still have some drowsiness but I no longer fall asleep running heavy machinery. It makes me hold hope that one day I'll be back to how I was before.
                            Interesting that you also had similar long-term effects, even years of being off the medication. It really makes me think it wasn't development but the medication that changed my sleep patterns and energy level. I guess I can be thankful that before I went on medication, I was at such an extreme of non-sleepiness, that being medicated only made me "normal." Here's hoping the energy from eating and living well will diminish our drowsiness even further!

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                            • Originally posted by Paleobird View Post
                              Yep, the docs told me I would "get used to" the Tegratol they put me on which made me feel worse than the seizures. That seems to be their stock answer for any side effect complaint.
                              Yeah, that, in addition to several other incidents, really hasn't helped my faith in doctors.
                              That's good news that the ketosis is helping, Q.
                              I'm not currently ketogenic, in my current situation I am having a hard time getting enough fat in my diet to displace the carbs. I have been trying to stay as low carb as possible though.
                              (Good to hear from you, BTW)
                              I fade in and out of forums from time to time.

                              Originally posted by Aldergirl View Post
                              Interesting that you also had similar long-term effects, even years of being off the medication. It really makes me think it wasn't development but the medication that changed my sleep patterns and energy level. I guess I can be thankful that before I went on medication, I was at such an extreme of non-sleepiness, that being medicated only made me "normal." Here's hoping the energy from eating and living well will diminish our drowsiness even further!
                              I have the theory that after removing all the foods that were causing my body stress and adding in a lot of good fats and proteins for building materials, my body is starting to repair itself. A little difficult to prove though. I hope you get better in the future as well.
                              Primal Journal

                              Comment


                              • Originally posted by Quies View Post
                                I have the theory that after removing all the foods that were causing my body stress and adding in a lot of good fats and proteins for building materials, my body is starting to repair itself. A little difficult to prove though. I hope you get better in the future as well.
                                I totally agree. Can I prove it? No. Do I care? No. It's working for me.

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