Page 5 of 6 FirstFirst ... 3456 LastLast
Results 41 to 50 of 52

Thread: Seizures, epilepsy, and a natural solution page 5

  1. #41
    Paleobird's Avatar
    Paleobird Guest
    Every case of epilepsy is different and so I thought it might help everybody to share some.
    So just in case anyone else with (or without) epilepsy cares, this is my epilepsy story:

    I was 22 years old, in great health, a senior at Stanford University, summa cum laude GPA, a job all lined up for after graduation. In short my future was so bright I had to wear shades. It was the last semester of school, right at midterms.

    One night I had a paper to write and an exam to study for so I put on the pot of Italian roast coffee, got out a stack of chocolate bars, and set to it as I had many a time before. About 4a.m. I finished up and decided to catch a few hours sleep before class. I had a seizure in my sleep. (My boyfriend was there and saw it).

    I got to class the next day and somehow managed to turn in my paper and take a test despite feeling like a complete zombie. Then I went to the campus clinic and told them what had happened They (whose medical expertise stops at bandaid and aspirin) sent me to the Stanford Medical Center, one of the foremost neurological research institutes in the world. They, in their infinite wisdom, put me on Tegratol, the drug that I said felt like an Everclear hangover that never ends. I told them I din't like the side effects but they told me to take my pills like a good little girl or they would call the DMV and have my license yanked. Even medicated, I was still having seizures sometimes 2-3 times a night with 2-3 nights like that per week.

    (For some still unknown reason, my seizures always happen at night when I sleep. I wake up just as I go into one.)

    I had a lot of zombie time in there that I don't even remember. (That's scary). I broke up with my boyfriend and years later I had to call him and ask him why we broke up because I honestly couldn't even remember the event. I finished school, the cum laude averaged out with the crappy grades I got that last term. I tossed the meds as soon as I got diploma in hand and went completely unmedicated. I started working and was making a pile of money but was hanging out with a crowd who were putting it up their noses as fast as they made it.

    There is nothing like self medicating into oblivion on coke and booze to try to run away from the fact that, most of the time you are in serious PAIN. This is something I think most people who have never had a seizure don't get. Somebody looks relatively OK after a seizure but they're not. A seizure is like your whole body fighting itself. Your biceps and triceps both try to contract at the same time. Your quads/hamstrings too. All over your body, these electrical impulses gone haywire are sending contradictory instructions to all your muscles. After a seizure, you feel like you have just run a marathon.

    That is not even getting to the subject of mouth pain. The tongue is one of the most neuro-sensory dense areas on the human body. You often bite your tongue and/or the inside of your cheek in a seizure. This gets worse when it's still all swollen from the last time and you have another one and bite it again. I have scar tissue on the sides of my tongue.

    I self medicated and partied my ass off for a couple of years after graduation. Then I finally decided to change jobs and take charge of my health. I got into body building, cut out all the booze, drugs and other chemicals such as caffeine and sugar in my life and went all natural. Probably without knowing it, my body building diet was inducing ketosis (high protein, low carb, low calories). It really worked. My seizures diminished to a manageable level, about once or twice a month.

    Then I met a neurologist (a friend of my sister's husband) who was not a jerk and actually listened. He wanted me to be in a research study so he did all the tests he could think of for free and, finding nothing, put me on phenobarbitol which brought my seizures down to one every six months or so. I figured that was as good as it got so I went with that for years.

    It was only 6 years ago that my Kaiser neurologist got me to try a second medication, Valproic Acid. I haven't had a seizure since. Better yet, I used to wake up at night often with the panic aura feeling of a seizure starting. This happening several times a night makes for some very patchy un-restful sleep. That NEVER happens anymore. I know I used to drink too much back when my seizures were bad. Now I feel no need. I wasn't an alcoholic, I was just afraid to go to sleep at night. Now I go months at a time without even having to think about seizures. It's wonderfully liberating.

    Part of me going Primal is about me getting back to those body builder days (minus the 80s big hair). I don't lift heavy like that anymore but I am getting down to that level of leanness and fitness again. I am hoping to reduce my dosage of meds gradually over time as I agree that the less meds necessary the better in the long term for the health of my kidneys, liver, etc.

    Being dependent on meds sucks but having seizures sucks a whole lot worse. I hope we can all find that individual balance point of minimum pills but maximum control.

  2. #42
    cerebelumsdayoff's Avatar
    cerebelumsdayoff is offline Senior Member
    Join Date
    May 2010
    Location
    Chicago
    Posts
    486
    Paleobird,

    Thank you very much for sharing your story; I really enjoyed learning about your experience and it does help knowing I'm not the only one there who has this condition. I usually consider myself to be a very rational person. After all, I just got an MA and I am 2 or 3 years away from obtaining my PhD in Social Psychology. It is funny, though, how one can lose all his or her sense of rationality when something serious happens to him or her, as with this case.

    Indeed, after having no seizures for 4 years, and accomplishing that without medication, I thought that my teenage seizures were a thing of the past. These 3 seizures over the last month have been a real eye opener, because I do consider myself to be healthy. I feel lean and strong from lifting heavy things for over a year. Of course, call me stubborn, but I am unable to give up my coffee, not because I need the caffeine, but because I truly enjoy coffee for what it is: a fine drink. One of my favorite parts of waking up is preparing fresh locally roasted coffee (Chicago is a great coffee town) in my Chemex. I do not drink gallons of coffee, but I do enjoy a cup or two. Also, nothing beats a cup of fresh espresso (Metropolis's redline espresso is my favorite; also Chicago's very own).

    I've been taking Vitamin D again as of lately, doing about 12,000 IU a day of quality pills alongside a tablespoon of Fish oil and vitamins to bolster my body. I'm also not stopping with my working out: I am taking a break from the gym by doing simplefit with my pullup bar for the next week or two and then I'll make a comeback to lifting heavy stuff (though I have to admit that I am a bit afraid to return to the gym given that is where my last two episodes occurred).

    The doc put me on Keppra, and I am currently taking about 500 mg a day, which does not seem to be screwing with my head at all (something I was afraid the drugs will do). When I was first diagnosed with epilepsy at 16, they put me on Trileptal and Depakote, which really evoked the drowsiness all day. That's how my own story began:

    At 16, I was playing an online computer multiplayer game with my friends while talking to them on the phone. I got a funny feeling and woke up on the floor feeling nauseous; then, I went to bed to rest because I did not know what happened to me. My friends then told me that I made odd noises through the phone, which fits the description of the seizure in retrospect.

    The worst spectacle happened a few weeks later when I was sitting in my high school library (it was junior year), reading during study hall. I got that aura and woke up with paramedics putting me on a stretcher; I had a seizure. That was bad, given that kids could be cruel in high school, and my friends all ostracized me as they did not know how to react to what had happened. Best of all, I was right about to get my license before the seizure happened, and I had to wait an extra 6 months because of that. Even when I did get it, no one wanted to get into a car with me.

    Fast forward to freshman year in college, and I had a span when I experienced many seizures, including some in my sleep (I remember waking up on the floor on at least one occasion). Then, one day, they stopped, though I was still on medication. After some time taking medication and not experiencing seizures, I decided to completely redo my lifestyle. I was overweight, never exercised, and was just all around unhealthy. That was also the time I decided I wanted a PhD in psychology. I took up the SAD way of losing weight, did better in school, and eventually ditched the pills.

    It is now the summer before my third year as a grad student, right after I got my MA. The seizures are back much to my dismay. Though they appear less severe than they used to be, they are still there, and I am almost obsessing with trying to figure out "why." That factoid may be obvious by the formation of this thread.
    --
    Here it is, your moment of zen.

    It's a no brainer: The journal of the cerebelum

  3. #43
    Paleobird's Avatar
    Paleobird Guest
    For people with epilepsy, caffeine=poison. You seem to be willing to move heaven and earth to get your seizures under control without an excess of meds but you won't do the one little thing of changing from regular to decaf? How rational does that sound? Your brain, your choice.

    I'm so sorry that you had to go though being made fun of for your seizures. Kids can really be cruel. Now I understand more where that comment about being embarrassed at the gym was coming from.

  4. #44
    Digby's Avatar
    Digby is offline Senior Member
    Join Date
    Dec 2010
    Location
    Eastern PA
    Posts
    1,449
    Paleobird, your story is very powerful. i'm glad you have done so well getting your life on a healthy path, and are willing to share your experience with @cerebelum.
    This time, like all times, is a very good one, if we but know what to do with it. Ralph Waldo Emerson

    Any given day you are surrounded by 10,000 idiots.
    Lao Tsu, founder of Taoism

  5. #45
    Paleobird's Avatar
    Paleobird Guest
    Quote Originally Posted by Digby View Post
    Paleobird, your story is very powerful. i'm glad you have done so well getting your life on a healthy path, and are willing to share your experience with @cerebelum.
    It's also meant for anyone else lurking on this thread feeling confused, embarrassed, or just plain overwhelmed by the reality of the statement. "I have epilepsy". Holy f*ck! That is a tough one to deal with. When I was at my worst off on seizures, 3 a night 3 times a week, I seriously considered killing myself. I'm so glad now that I didn't. I am going to go climb Mount Kilimangaro next month. There is a life beyond diagnosis and it is worth living.

  6. #46
    solstice's Avatar
    solstice is offline Senior Member
    Join Date
    Apr 2012
    Location
    In the beautiful mountains of Pennsylvania!
    Posts
    471
    Only just reading this thread but really benefitted from it...

    Video games can also spark seizure activity---which could have been part of my story at 14 years old! I'm vowing to go back to sugar free caffeine free and as close to a ketogenic diet as possible. I think it's easier to be in ketosis when you have a definite REASON.
    Check out my blog on nature and nurture!
    http://thewoodsygal.com/

  7. #47
    Paleobird's Avatar
    Paleobird Guest
    Quote Originally Posted by solstice View Post
    Only just reading this thread but really benefitted from it...

    Video games can also spark seizure activity---which could have been part of my story at 14 years old! I'm vowing to go back to sugar free caffeine free and as close to a ketogenic diet as possible. I think it's easier to be in ketosis when you have a definite REASON.
    Yes, this and florescent lights too which might have been the OP's problem at the gym (?)

  8. #48
    solstice's Avatar
    solstice is offline Senior Member
    Join Date
    Apr 2012
    Location
    In the beautiful mountains of Pennsylvania!
    Posts
    471
    i didnt know that about fluorescent lights---I changed those out in my kitchen but would like to get away from all of them in my house...that could be a battle with hubby though who is into energy savings.
    Check out my blog on nature and nurture!
    http://thewoodsygal.com/

  9. #49
    Paleobird's Avatar
    Paleobird Guest
    Quote Originally Posted by solstice View Post
    i didnt know that about fluorescent lights---I changed those out in my kitchen but would like to get away from all of them in my house...that could be a battle with hubby though who is into energy savings.
    Some of those new compact florescent bulbs they have are not as bad as the old "industrial" kind. It's all about the flicker factor.

  10. #50
    catparade's Avatar
    catparade is offline Junior Member
    Join Date
    Apr 2010
    Posts
    28
    Primal Blueprint Expert Certification
    Hey
    Just seen this thread had re-emerged and thought I'd comment as it seemed timely.

    I was diagnosed with epilepsy in 2011 after two massive Tonic Clonic's and put on Keppra. Along with that I took a B multi, Vit D, magnesium when I needed help sleeping and kept to a low carb diet, with lots of coconut oil and fats. I basically was back to living a normal life (although you never quite let go of the fear of seizures). This year has already seen me backpacking for a months through South America, surfing, lifting the heaviest I'd ever done, commuting 8 miles to work (pretty hair raising in London...) and just booked a week snowboarding.

    I still had the odd glass of wine, 80% dark chocolate, and a couple of cups of coffee a week. I have gradually moved from low carb to having the occasional sweet potato or carrot, to eventually taking in about 100g carbs a day. About 98% clean, primal food.

    Unfortunately, I had my first seizure in almost 2 years last weekend. Followed by another two during the week. They weren't as voilent as the ones I had in 2011 and I didn't lose consciousness. Just control of my body, inability to speak, shaking/jerking.

    I'm so upset as I've never missed a dose of Keppra and felt like I was really doing well. Now my dose has been doubled and I'm going through all the nasties of adjusting to more meds in my system. I have no idea what caused this relapse. All I know is that I'm cutting out all caffeine, alcohol and carbs as of today. And canceling my snowboarding trip.

    I'm determined to find out what triggered this set of seizures, but really it could be a million things.
    It's good to know that there are a few of you in the primal community that are doing well.

    x

Page 5 of 6 FirstFirst ... 3456 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
  •