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keeg1010 (@keeg1010)

Seizures/how to dose CBD/medical marijuana

Epilepsy & Seizures | Last Active: 10 hours ago | Replies (63)

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Hi Kerry (@keeg1010)!

It is a pleasure to share my experience with you and others!

I started with Medical Marijuana in August 2020 after trying 5 different AEDs (Lamotrigine, Carbamazepine, Oxcarbazepine, Gabapentin, and Lacosamide) without much success, not very nice experiences, and much frustration in a period of 18 months. Even though some AEDs have controlled my seizures, I got really ill and in bed.

First, I started with artisanal medical marijuana from a local association, one of the very few ones that can produce medical marijuana here in Brazil. At that time, I used full-spectrum medical marijuana with a low dosage of THC. My doctor at that time, increased the dosage little by little, replacing Vimpat (Lacosamide) with this medical marijuana in a very careful way. In 6 months I got rid of Vimpat, which was a poison to me. To speed up Vimpat’s withdrawal, my doctor reintroduced Carbamazepine in a low dosage.

In May this year, I started seeing an epileptologist and he recommended just pure CBD, instead. According to my current doctor, THC is not recommended to people with epilepsy. I am taking the one from Farma USA (Purodiol 200 mg/ml – 0,5 ml 2 x day), that I import from the United States (perhaps the commercial name of Purodiol is different in the States). I still take Carbamazepine in a low dosage (60 mg 2 x day). Little by little, I am feeling better, having more energy, sleeping more, being less anxious, and in a much better mood. I still have seizures (complex seizures), about 4 per month, but they are much milder now. There is still room for CBD increase, but this must be done little by little as CBD leverages AEDs.

Here in Brazil, one needs a special prescription to buy medical marijuana at the pharmacy or association as well as to import it. Options are still not many yet here in Brazil and the ones available are more expensive than imported CBD.

In your message, you have mentioned “the card does my soon no good”. Sorry, I could not understand what you mean by card. Can you explain it to me?

Based on my experience, I recommend seeing an epileptologist when one has epilepsy. If I had done that right from the beginning, I believe my way to getting better treated would have been shorter. In the States, you have excellent epilepsy centers such as Mayo Clinic and others. I know that there is still some prejudice regarding medical marijuana in the States as well as in Brazil. But when you have tried all you could in traditional medicine and you do not get better… Again, my experience with CBD has been very positive so far.

If you have further questions, please feel free to ask me as well as to send me private messages.

Stay strong!!!!

Kind regards,

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Replies to "Hi Kerry (@keeg1010)! It is a pleasure to share my experience with you and others! I..."

I am so glad to hear that the CBD is working well for you. Can you explain what you mean when you say CBD leverages AEDs? I have not heard of Purodiol before. All of this CBD vs. THC for seizures is new to me. Since you tried both, which would you say had the best outcome? I see conflicting stories where some say CBD works best and others say THC is the way to go. I'm glad to hear that you are able to import the Purodiol to Brazil. I did request a referral to Mayo Clinic from my primary care doc but when I first tried to take my son there, the wait list was about 6 months. I did a little more digging on epileptologists…according to the profile of my son's neurologist, she is an epileptologist. I really like her but Mayo clinic has so many options on diagnosing where the seizures are coming from and several different treatments that are not available with my current neurologist. I live in Arizona. When I said "the card would do my son no good", I should have explained further. In Arizona, recreational marijuana use was recently approved. Now, anyone can go to a dispensary and get medical grade THC. Prior to that, the only way you could gain access to medical marijuana is through a doctor. There were certain qualifying conditions (such as seizures, chronic pain, migraines,etc). Once you saw the doctor, they would either approve you for medical marijuana or deny you. If approved, the information was sent to the state department and the state would issue you a medical marijuana approval card (kind of like a license) and then you could go to a dispensary. Without it, you would not be allowed in. But, that changed last year so everyone has access. The card wouldn't do my son any good because he is non-verbal and couldn't go to a dispensary and order anything. I know the dispensary's provide medical grade products but I don't know how pure they are compared to a prescription compound. I'm frustrated that my son's neurologist recommended CBD and THC but has no info on dosing.
Thank you again for sharing your experience with me. I just recently found this forum after I was frantically searching for help the day my son had his 3rd seizure and injured himself when he fell. Talking to people who can help guide us has been amazing and it's so inspiring to see the openness of everyone here.
Hope to talk again soon!