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new here, link me to photosensitive epilepsy info?

Discussion in 'Beginners Area' started by chrissysdozen, May 13, 2015.

  1. chrissysdozen

    chrissysdozen New Member

    Hi guys!
    I'm currently drinking out of the fire hose on this site- listened to 4 interviews via podcast yesterday after seeing a neurosurgeon Monday who diagnosed me with "new onset seizures" of the photosensitive variety. He laughed at me when I declined medication even though this is negatively affecting my daily life. He has scheduled me for an MRI without contrast and an EEG. The idea of doing the EEG with the strobe lights terrifies me because it always triggers a very bad migraine. I'm already trying to figure out a good excuse to cancel that appointment.
    Enter research, finding Dr. Kruse, listening to podcasts and trying to make a plan.
    If there are links you think I should read, please post them for me.
    I've done 23&me (homoz mthfr), familiar with keto adapted diets, live on a farm outside of town, homeschool (so I'm home most days), garden (in the soil and sun), but don't eat much seafood and unlike my two neighbors, we have city water (they have well). I'm going to add more seafood and figure out better water asap... But I would love to have better info specific to the photosensitivity thing.
    Thanks in advance!
    Chrissy
     
    CDawn15 likes this.
  2. Jack Kruse

    Jack Kruse Administrator

    NeilBB needs to chime in here.
     
    chrissysdozen likes this.
  3. Jack Kruse

    Jack Kruse Administrator

    This has to do with AQA 4 gates and the electric charge in microtubules and how it affect light and water. I have not spoke a lot about this mechanism yet.........
     
  4. chrissysdozen

    chrissysdozen New Member

    This has been an issue for me for years, but suddenly got worse the past two months. I had an episode three weeks ago where I was exposed to the strobe effect as the passenger in our car and after a few minutes I lost some motor function and had some severe confusion (couldn't figure out how to turn off the water cooler spigot). Neuro called it a typical confusatory migraine (or something similar to that terminology which sounds made up on the spot).
     
  5. Jack Kruse

    Jack Kruse Administrator

    Tells me your environment got a lot worse or your redox dropped for some reason............you definitely need to increase spring water and DHA intake.
     
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  6. Jack Kruse

    Jack Kruse Administrator

    breathing cold air also will help a lot. I tell people with this type of headache putting your head in a free
    zer and deep breathing will help
     
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  7. chrissysdozen

    chrissysdozen New Member

    Hmm... Environment- it's spring, neighbors spray for weeds in their pastures. Maybe that?
     
  8. Jack Kruse

    Jack Kruse Administrator

    could be.............that would change the EZ in neurons for sure.
     
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  9. chrissysdozen

    chrissysdozen New Member

    Do ceiling fans screw it all up too?
    They didn't bother me for a long time but recently even without the light on I feel "panicky" around them. (I sound like a crazy person. I'm really not. I just have 12 kids and don't have time to be "down" with a migraine all the time.)
     
    CDawn15 likes this.
  10. NeilBB

    NeilBB New Member

    Normally, in my conventional work, someone like you would be admitted to a special unit in our hospital called a "seizure monitoring unit" hooked up to EEG continuously for 1-5 days (with an IV inserted for emergency treatment of a large seizure if it were to occur). We would attempt to provoke and witness the events with video and EEG in place to obtain a definitive diagnosis before proceeding to next step. This would be the first step in conventional management to distinguish epileptic seizures from migraines from other possibilities. We would also perform a high-resolution 3-Tesla MRI as a routine matter. There would be many treatment options and possibilities, both conventional and "alternative" depending on the specifics of the case. My personal opinion is that most of the things Jack recommends in his prescriptions would be likely to help all of these conditions in various ways, but without knowing more details, hard to say a lot more than that at the moment. I do think drinking clean water, lots of seafood, and icing the brain with something like a cryohelmet would be great general advice for anyone with any "brain disease." Also a ketogenic diet is of proven benefit to patients with seizures in both conventional and alternative world, although very few people that I see in clinic are willing to consistently follow it...
     
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  11. Jack Kruse

    Jack Kruse Administrator

    12 kids..........This is making some sense now...........12 kids alone would deplete you of massive DHA and iodine reserves. This alone would give you an exceptionally low redox.......so anything else in your environment to further lower it would put you over the edge in tissues with mitochondria. Your brain happens to be one.
    http://goop.com/postnatal-depletion-even-10-years-later/
     
    chrissysdozen likes this.
  12. chrissysdozen

    chrissysdozen New Member

    Thanks, NeilBB.
    If it keeps me out of the EEG/EKG/Strobe light thing... I'm in. I've done all the diets, including keto...I can do it again from a scientific standpoint instead of just cosmetic.
    This morning I've already found a local spring 15 miles from me and checked into some somewhat local stores that sell decent seafood (hard to find when the closest grocery store is 13 miles one way).

    Thank you both for the amazing information and being willing to share so freely.
     
    Jeanne likes this.
  13. chrissysdozen

    chrissysdozen New Member

    Only 4 are mine through biology- 8 were adopted.
    But yes. I saw an alternative practitioner after my 4th birth/depression 18 months later. He did a thermoscan and rx'ed the specific carb diet for 6 months which uncovered a celiac-like response to gluten. 10 years later and I can't eat any gluten without 2-3 days worth of sickness.
     
  14. NeilBB

    NeilBB New Member

    I used to do a lot of brain-mapping in the OR to assist our neurosurgeons who specialize in brain tumor resection. I would directly stimulate various areas of the brain with electrical current during the procedure while talking to the awake patient to assess function of various brain regions while we "disabled" them with electricity. This would help guide the surgeon as to which areas were vital not to remove.

    But what few have seen is this... Sometimes, this electrical stimulation would induce a seizure immediately. And when that happens, do you know the quickest way to stop it if it doesn't stop on its own? The neurosurgeon irrigates the surface of the open brain with ice-cold water. The seizure almost always stops immediately. Food for thought...
     
  15. chrissysdozen

    chrissysdozen New Member

    That's very interesting! Is a cryohelmet the best/fastest way to cool down the brain?
     
  16. NeilBB

    NeilBB New Member

    I like it. Use it personally for headaches and "general use" too. Feels good. That particular product is nice because it's well made (almost stylish? Lol) and it covers surface of head as well as carotids. But ice works too...
     
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  17. NeilBB

    NeilBB New Member

    Since you are photosensitive, I would also think about wearing blue light blocker glasses of some kind whenever exposed to a lot of artifical light, especially computer screens, even during daytime...
     
  18. chrissysdozen

    chrissysdozen New Member

    Hmm...I wonder if they can make my Rx with blue blocker lenses. I'll check!! Otherwise, just regular ones like they sell at retail stores? Seems simple enough.
     
  19. chrissysdozen

    chrissysdozen New Member

    ... And yet another failed attempt to get help from a traditional MD-- I saw my optometrist last year for optic migraines where I go blind in one eye for 30 min to an hour. No solution offered. If blue blocker lenses could help that....
     
  20. NeilBB

    NeilBB New Member

    Gunnars are widely available in prescription, but they only block some of the blue. I use them some. There are also custom options for lenses that block more. Ask Gretchen or Rub...they are big into that...
     
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