Marijuana to Treat Epilepsy?

Do you really want to be put on Charlotte's Web (cannabidiol/CBD), Epidiolex, or medical marijuana and wonder if a doctor with more expertise in epilepsy/seizures might not recommend it?

"Doctor shopping" can be dangerous

I didn't understand why my doctor wouldn't prescribe medical marijuana and was advised by another person with disabilities to see another doctor behind his back. After thinking about what the person said, I came to the conclusion that wasn't a good idea. That doctor would not know every detail about my health and my medical history, and wouldn't have expertise in epilepsy.

Is it safe if a doctor does not know every detail? No. Why? Because without knowing the types of epilepsy, seizures, syndromes, and the potential neurological and psychological effects of medication, it can be dangerous.

Epidiolex is a prescription medicine that is currently used to treat seizures associated with Lennox-Gastaut syndrome, Dravet syndrome, or other types of complex seizures.^{1, 2}

Would Epidiolex be used to treat my seizures?

Last time I was hospitalized in 2019, it was because my Onfi (clobazam) levels rose too high after my prescription increased the amount of milligrams. Many nurses thought Epidiolex was going to be added or Epidiolex would take the place of Onfi for me. But when the care team checked, they said they were a little shocked to learn it can potentially interact with clobazam and other anti-seizure drugs like Depakote and phenobarbital.³

Before speaking to my epileptologist about marijuana (cannabis sativa and cannabis indica), I smoked marijuana recreationally at a few different points of time in life. (It is now legal in New York.)

Smoking marijuana recreationally with epilepsy

One time, I was doing open mic at my favorite location with my favorite group. When the open mic was over I went to a friend's apartment and got stoned. Their marijuana made us get high, and above all, silly. Including, for me, unawareness and being very sedated. So much that I had to sleep over.

Another time, when the marijuana was almost out of my system, a seizure happened. So that was the end of that. Why continue something when it makes things worse instead of better?

Smoking marijuana more regularly

But then a while after that, a good friend (she’s trustable indeed) had some marijuana. It had no other effect other than making me feel very relaxed. No one was able to tell I smoked anything. It did not cause anything to happen, but when I started smoking 3 to 5 puffs a day before work I started to get paranoid, nervous, and agitated. But I would not give in that marijuana was causing it.

The next appointment I had with my epileptologist, I asked him if I could smoke recreational marijuana. His response was, "No." I then asked if I could be part of a study with another hospital in Manhattan having to do with cannabis sativa or cannabis indica, and once again heard, "No, you can not."

If you doctor advises against cannabis

But instead of having anger or not paying attention to the doctor's opinion, find out why you can not try cannabis/marijuana or other medications such as Charlotte's Web or Epidiolex.

I asked, "Why?" His response was, "Taking phenobarbital, the left temporal lobe..." He then began getting too scientific and kindly told me, "This could be a long conversation, let's just say you can't do it. It's not safe. I'll see you in a few months."

I don't mix marijuana and epilepsy now

Since then, I didn't touch it and think of him if I get tempted or asked if I want some. From speaking with my epileptologist, I learned that marijuana can not only interfere with epilepsy but all different brain functions and how certain neurological medications may work. It is always good to have curiosity, but remember, safety comes first.

All together, I smoked 18 times. Until I found out about the potential detrimental effects it could have on my epilepsy.