Page 11 of 14 FirstFirst ... 910111213 ... LastLast
Results 101 to 110 of 131

Thread: My Epilepsy Experiment. Anyone else have seizures? page 11

  1. #101
    kiks's Avatar
    kiks is offline Member
    Join Date
    Aug 2012
    Location
    US
    Posts
    74
    Primal Fuel
    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.

  2. #102
    Paleobird's Avatar
    Paleobird Guest
    Quote 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.

  3. #103
    Paleobird's Avatar
    Paleobird Guest
    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.

  4. #104
    kiks's Avatar
    kiks is offline Member
    Join Date
    Aug 2012
    Location
    US
    Posts
    74
    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...

  5. #105
    Paleobird's Avatar
    Paleobird Guest
    Quote 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.

  6. #106
    Aldergirl's Avatar
    Aldergirl is offline Senior Member
    Join Date
    Jan 2012
    Location
    Washington
    Posts
    489
    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!

  7. #107
    Paleobird's Avatar
    Paleobird Guest
    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.

  8. #108
    Crabbcakes's Avatar
    Crabbcakes is offline Senior Member
    Join Date
    Jun 2012
    Location
    Appalachian Ohio
    Posts
    2,286
    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

  9. #109
    Aldergirl's Avatar
    Aldergirl is offline Senior Member
    Join Date
    Jan 2012
    Location
    Washington
    Posts
    489
    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!

  10. #110
    Paleobird's Avatar
    Paleobird Guest
    Quote 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.

Page 11 of 14 FirstFirst ... 910111213 ... LastLast

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •