Epilepsy Medication

I did stop using Trileptal already as you can see here.

It is worth mentioning here that at worst periods over the years, I typically get two seizures a week, and an aura every other day. When things are at their best, auras occur only once every two weeks, and seizures don’t visit for three months.

Here’s an overview of my history:

  • 2009
    • After surgery, I started with two low doses of Trileptal (300mg X 2).  It worked, but still caused brain fatigue
  • 2012
    • Tried (on my own) cutting Trileptal off. I had some mental clarity back (can’t measure it as I did not know there were tools). Three weeks after that, I had my first grand mal seizure so I went back to Trileptal at 300 mg, twice a day.
    • I also tried Lamictal and did not see any positive/negative outcome, and it was taken along with Trileptal for almost one year. I then continued with Trileptal alone
  • 2018
    • Raised dose to 600 mg x 2 as seizure worsened.
    • Then seizures were not controlled during the day. A doctor proposed 450 mg in the morning, 450mg in the afternoon, and 600 at night. It reduced seizures but did not reduce auras.
  • 2019 (Jan)
    • I increased it to (900 mg X 2) to manage surprisingly increased symptoms. Fewer seizures resulted, but at the expense of memory challenges and general slowness in thoughts.
  • 2019 (June)
    • Because of the new supplements (my bet is on EntroVite), auras decreased big time. I felt safe to lower Trileptal to 600mg (morning) + 300 mg (night).
      • Over 3 weeks, I’ve only had one seizure since then, and one aura.
    • Having stopped Curcumin (which was a high dose), seizures and auras began to occur less frequently, and made the fatigue start to go away! But I had not reached the ultimate outcome yet.
    • A medical doctor proposed introducing Lamictal to reduce Trileptal (or maybe take it off?). I have not made up my mind as I’m looking into ways to take both options away where possible to avoid side effects.
  • 2019 (Sep to Dec 2019)
    • I have reduced Trileptal from 300 to 150, then I removed it completely on Dec 14th, 2019. Purpose: to get supplements like Curcumin and others that were not possible because of Trileptal.
    • I have not yet taken anything to replacement Trileptal yet. I thought I won’t need anything, however the recent EEG says I have to take something else. Perhaps Lamictal.

Better Statistics

I have written a full summary (no story telling!) about the connection between the seizures and key symptoms which in my opinion shows that many things happened 5 years post-surgery while brain function was impacted right after surgery, and started getting worse in 2017.

Note that I’ve tried other medications back in 2012, and they caused me unbearable side effects. This includes Keppra which made me feel depressed and started driving me to experience suicidal thoughts.

Hoping to Replace Trileptal

It is important to note that CBD was the ultimate start toward a resolution, which made me brave enough to start to reduce Trileptal gradually. While worked great for me, it has not gotten to a point yet where my dream of removing Trileptal completely has come true. Read more about it here

Lamictal is one more medication that another doctor I met in 2019 recommended that I take into consideration. I refrained from that given my failing history of having it make any difference back in 2008. Are things going to be any better this time? Not being so sure, I decided I will put it on hold. Here is more information about the recommendation that a Neurologist I met in 2019 in Atlanta told me.

What Dr. Datis Reminded Me Of?

In one of his sessions, Dr. Datis reiterated the fact that more seizures (of the type I have) and chronic epilepsy lead to impaired memory and cognitive function.

That was easily found in the research article, Cognitive impairment in Epilepsy: The Role of Network Abnormalities.

Could this be what’s been going on with me during 2017, 2018 and 2019? Does this apply only to Grand mal (which I only had three episodes with during my life), or is it the case with other seizures (partial complex seizures and simple complex seizures) which I have had many of at the frequencies I described here?