Neurologists Opinion

Dec 2019: Two Neurologist Opinions

Note that I already stopped using Trilateral gradually between 6/2019 and 12/2019. More can be seen here.

That pushed me to see Marina Hadidi, MD on Dec 22nd, 2019 (Neurologist ) who checked my EEG and she said that it shows good progress in comparison to what’s shown in 2011. She did mention that I should be on a medication, and that it is possible that my cognitive challenges are related to what the EEG is showing.

She did mention that the EEG is showing an improvement in comparison to what’s shown in 2011. However, not significant enough to celebrate that I don’t need a medication.

So, she thinks I should be on Lamictal, just like Dr. Julian suggested in July 2019 (mentioned the section below this one) .

Why I hate Lamictal? because back in 2012, I tried it and I don’t remember anything of benefit. However, I can’t honestly go fully against it because back then I was taking it along with Trileptal.

On the 28th of Dec, I met with another doctor, Layan Akijian, MD, a neurologist with good reputation of helping patients with epilepsy in Jordan relocated recently from London.

Her thoughts were:

• EEG shows you have to take some action. She liked the fact that I took the step of taking one.
• She said that statistically, it is know that someone who had brain surgery will most likely continue to have seizures.
  • When we have an abnormality in the brain, our EEG will always shows an epileptogenic focus. Some studies shows that scarring tissue post surgery will probably develop epileptogenic focus in new areas after ten to fifteen years.
    • She wondered if a neurosurgeon will want to do further surgery to reduce seizures. (I don’t think I have enough the option anyways)
• She mentioned that memory can be affected just by having seizures, speech, reading, writing, …etc.
• You are too young to link age to memory challenges at this stage
• She recommended I take the same medication: Lamictal, at the same dosage that Dr. Julian (below) recommended.
• She said that it is best to consider whether or not the medication is working by checking your symptoms and not the EEG because someone with my condition will continue to show instability on EEG tests.

July 2019: Second Opinion in Atlanta

I met with Julian A. Bragg M.D., Ph.D at MIDTOWN Neurology.  

His point of view was that I should try Lamictal as possible ways to either:

• Reduce seizures
• Possibly start reducing Trileptal (starting 2 to 6 months after starting Lamictal).
• The dosage he suggested were
  • Week 1 and 2
    Morning: 1 tablet
  • Week 3 and 4
    Morning: 1 tablet. Night: 1 tablet
  • Week 5 and 6
    Morning: 2 tablet. Night: 1 tablet
  • Week 7 and 8
    Morning: 2 tablet. Night: 2 tablet
  • Week 9 and 10
    Morning: 3 tablet. Night: 3 tablet
  • After Week 10
    Morning: 4 tablet. Night: 4 tablet
    He said to consider an EEG to see if there is any ongoing seizure activity after Week 10 to start reducing Trileptal gradually

I was considering that in the past. However, since I was very reluctant to add yet another medication, I was considering the path of seeing if CBD would work instead.

I was very pleased that I chose to wait, as it turned out that going for CBD was an excellent decision.

Worth noting: I had an aura during my meeting with Dr. Bragg, so he did some basic tests during that time and they returned normal.

2010-2019: Ziad Mahadeen, MD

I first met Dr. Ziad while I was trying to find ways to reduce seizures. He spent a good amount of time listening and considering what might be done.

• He first gave me Trileptal 300 mg x 2. That worked alright but kept me “overly calmed” and made me less responsive. I was told to wait a few weeks before giving a final verdict.
• 6 months down the road, we had to try another medication: Keppra.
• Within a month, Keppra made me depressed with suicidal thoughts, so I returned to Trileptal.

Three Grand mal Seizures (2014 to 2018)

Two years after my first Trileptal prescription, I began to feel as though I wanted to stop taking it since I wanted to gain back my focus and mental clarity.

Over the course of a month, I reduced my doses and stopped taking it without a doctor’s permission. Back then, I did not understand how complex these medications were or how complex the whole medical industry was all together—it was immature of me, and I learned from my mistake.

For the first two weeks after I cut out Trileptal I was very happy. I saw a drastic improvement in my focus and clarity. I did not have the tools yet to measure my own progress, nor did I really know the full extent of my challenges at the time.

What I do know was that cutting out Trileptal made me feel like myself again—but only for those first two weeks.

As soon as those two weeks were over, I went to see a movie, which had lots of lights and high-pitched, loud voices. It was during this movie that I had my very first grand mal seizure.

That experience made me run back to Trileptal, and I have not given it up since. I had no idea about the other hidden diseases and challenges that I had not yet discovered.