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My exp sofar with epilepsy

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Jasmine2006
Jasmine2006

i started to have uncontrolled epilepsy since 2012 (28 yrs old) after an unknown viral infection into my brain. The infection has left a scar on my left side of the hippocampus.  I have been on keppra 750mg 3x per day and clonzapem 2mg/day, this combination still give me 1 grandmal seizure about once per month. 

Im now married and pregnant so I stopped the clonzapem (category D)it seems like my seizure is still happening about once per month. I started noticing how my diet would change/reduce  the frequency of my seizure. 

I realized that, having food with caffeine, alcohol, MSG, high glucose. or anything that stimulates the neuron activity and lowers the neuron activation threshold would increase my seizure frequency. 

im still doing trial and errors with the food that I'm allowed to eat and avoid anything that stimulates my neurons and any stress that would lowers my neuron threshold such as sleep deprivation ...

im also taking 2mg folic acid for my pregnancy and DHA and B complex as suggested by my doctor. Folic acid for better baby neural tube development, DHA and B complex for my memory. 

It seems like if I take my medication on time (keppra 1000mg 3times a day) have enough rest and not eating anything that would stimulates my neurons, and not get emotional, my seizures frequency gets reduced. 

All of these are based on my personal experience and I am still doing trials and errors on this. Feel free to offer any other suggestions....

2 likes, 5 replies

5 Replies

  • SteV3
    SteV3 Jasmine2006

    Posted

    Hi Jasmine,

    I see you are on a number of anti-epileptic medication, who actually prescribed these to you?

    You say you are pregnant, have you seen a Neurologist or Epilepsy Specialist at all? You do not mention your doctor or any other specialists, during your pregnancy, and with uncontrolled Grand Mal Seizures this really should be looked in to.

    I have to see my Epilepsy Specialist and Neurologist at least once every 3 months, unless the frequency increases then I have to contact the hospital to make appointments in between. I also suffer from Functional Seizures which are very similar.

    Regards,

    Les.

    • Jasmine2006
      Jasmine2006 SteV3

      Posted

      Hi Les,

      my neurologist prescribed to me when I was in NYC ( where I first started my first seizure) but I have changed my neurologist about half year ago  since I moved to San Diego now with my husband. For me, tracking my diet and avoid stress really helped. I used to have seizure once/week to now about once every 2month...I know it's still not 100%controlled but i realized that my seizure aways occurred when I couldn't help myself eating those prohibited food...ie, eating food with MSG (a lot of Asian foods, processed food all have this ingredients)

      Ps. Im right now 36 weeks into my pregnancy.

      good luck!

  • david01026
    david01026 Jasmine2006

    Posted

    Hello Jasmine, I am very interested to talk to you about dietary effects on epilepsy especially as we both use Keppra.  I  believe there is a way of communicating in private on this forum as I don't want to go public, I will make further searches next week.  Let me know if you are happy to do this.
  • steve1951
    steve1951 Jasmine2006

    Posted

    Jasmine

    I’ve also read to stay away from soy and artificial sweeteners like NutraSweet, Equal or any drinks/foods containing aspartate. I’ve asked my neurologist about vits but he hasn’t recommended any but I also take a B complex. I’d suggest that if any other Dr prescribes a med, look it up on the web before taking it. I had knee surgery last year, and although the Dr knew I had epilepsy, he prescribed a high dose of tramadol for pain. I started having seizures and found out on the web that tramadol can lower the seizure threshold.

    I take 1500mg of levetiracetam (Keppra) and 450mg of lamotrigine (Lamictal). I’ve set alarms on my cell phone as a reminder when to take them. (My morning alarm is going off now.) You may want to consider getting a med alert necklace or bracelet if you happen to be out on your own and have a seizure.

    I hope you have a healthy baby. Take Care, Steve

    • Jasmine2006
      Jasmine2006 steve1951

      Posted

      Thank you Steve! I forgot to mentioned in my previous post that I also stay away from soy and artifical sweeteners like aspartam,saccharin, xylitol ...although I am not sure why soy milk gives me seizure. Tofu is okay for me so far though. 
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