Why Did I Consider CBD?
I typically switch between multiple auras a week and a different set of complex focal seizures. I have summarized records of these here.
In July of 2019, I discovered that I could reduce or remove Trileptal as a way to answer my big question: Is Trileptal the cause of my mental challenges? Could CBD be a safer Trileptal replacement?
I met with Dr. Jeff Hergenrather to discuss better seizure control and hopefully improve my mental fatigue.
After I spoke to Dr. Allan Frankel, however, proposed a very different protocol. He seemed to have more evidence, as he had treated 600 patients with CBD oil, with a good percentage of those treated showing a reasonable success rate for seizure control.
I decided afterward to just start!
Started to Use CBD
July 2019
I began CBD treatment on July 10th, 2019. I met with a wide range of professionals in the area, learned about measuring CBD potency, the different brands available, and the dosages that I should start with. With the CBD business booming in recent years, I discovered that it is very easy to buy the wrong product!
Here is the certificate of analysis for the specific product called 1000mg Tincture that I chose. The certification explains better the ratios contained by the product
The product I chose allows me to use one bottle for a whole month, which, in contrast, is great—most of the older, reputable vendors only provide enough to last for four days with a single bottle.
Protocol
- Strictly taken at 7 a.m. and again at 7 p.m.
- Dosage:
- I started with 0.25 mg every 12 hours, and then I went up to 0.4 mg, and that worked for three months (between 6/2019 and 9/2019)
- beginning of 10/2019, and after I met with Dr. Sandlin Lowe for a SPECT Scan, he recommended a dosage to move from 0.4 mg to 2 mg every 12 hours (almost 4 times more). Reminder that this is a high dose given that the type I bought is around six times stronger than what’s out there on the market
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Initial Skepticism
I was skeptical when I began, and my reason for starting was driven by having one very bad day where I experienced full fatigue and auras. This was a deciding factor for me, so I decided to “kick it off” and start with my first dose. It was unbelievable. Within 30 minutes of taking my first dose, I found that I was free of auras, and my energy was back until the evening.
Outcome Over Time?
- Day #3: I had one seizure, but it was far milder than usual.
- Day #7: I had one seizure, but it was even milder than the one on day #3
- 21 days later (time of writing): No actual seizures have taken place. However, simple focal seizures were seen twice!
- 3 months. no further changes.
- 4th month forward (after getting the dosage high), I have not had simple focal seizures anymore. (It is only been a few days since I wrote this)
Simple Focal Seizures
October 2019
I am writing about this as this used to take place in the first three months. Starting October, I no longer have simple focal seizures (been only a week since then, at the time I wrote this)
- They last less than 60 seconds. During those 60 seconds, I am able to speak, think, find words, and walk with confidence (reminding me of the days before surgery).
- During those times, I found that I could read but that it was slower than usual. Before CBD, none of the above was possible for me. I typically experience simple focal seizures twice a day when they occur more frequently, while other times it may only be once every three days.
Final Verdict on CBD
CBD is progressively making a significant improvement in my case!
I still believe something else is behind the seizures because I did not experience them at that frequency five years ago, and my MRI shows that my brain is still where it was in 2010. No progression (and that got even proven with the recent SPECT Scan)
Next, I want to begin focusing on reducing my Trileptal intake. I have found that there are many different professional opinions on how to begin reducing its use. Some have mentioned wanting to wait an additional month before starting a plan to reduce my intake, while others believe that I should begin the process now. I can share more details about their advice and reasoning upon request.
Interesting Findings!
It’s clear that my mental clarity improves around 6 PM each day.
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- This is the time when both Trileptal and CBD are depleting the body. My theory is that the depletion of Trileptal brings me further mental clarity, while CBD is not responsible for anything beyond controlling seizures.
- Accordingly, I’m thinking it’s about time to gradually reduce Trileptal from the body gradually (e.g. reduce morning dosage to 300 mg or 450 mg)
Another interesting fact is that the C-Reactive Protein, High Sensitivity went down from 2.4 mg/L to 0.96 mg/L in four weeks! Could it be CBD?
I’ll surely keep updating you here as I progress forward.
Update: Changing Dosage & Company
August 2020
So, it has been a year. Plenty of progress! Most importantly, I quit Trileptal and that I have spoken to new experts in cannabinoid who have an opinion on how to go up with my dosage! So, I listened!
here’s the new brand I switched to and the bottle information
- Offers all therapeutic benefits of the cannabis plant through entourage effect without the need to consume THC
- Contain a range of Cannabinoids, except for THC
- The end product contains terpenes, essential oils, and other cannabinoids, offering additional benefit
- Goes through less processing than isolating
Dosage
Starting in January 2020, I changed the dosage to a much higher one.
I now take 1.25 ML, twice a day. This is far higher dosage than I used to take back in 2019
Outcome
The truth is, seizures are still where I left them back in August 2019. Mild seizures are still taking place between 3 and 7 times a week. Sometimes even twice a day.
I am trying through the day, and I am wondering if my brain challenges (memory, reading) are related to the fact that my EEG is still not clean!
Update: Changing Dosage Again
Feb 2021
I have met Dr. Antonio Russi, a Nepileptologist, with 49 years of experience.
He was happy to see that I am using CBD, but his proposal for the dosage is that the current dose is too small.
He thinks that 1.3mg is too low for my weight! The doctor did the math, and accordingly, he stated that I needed to reach 3mg (more than double the amount I am currently taking).
The doctor then shared with me how I can increase this in the following 5 weeks (gradually increase CBD dose)
I decided to start doing that in reality, but I delayed starting it until I had a dream that explained to me that the dose should have been 2.6 mg from my CBD (3500 mg/30ML, 116.7 mg CBD per ML).