Honokiol, Cannabis Oil, and My Brother Kamil
My brother Kamil has Lennox-Gastaut syndrome, or LGS. It’s a rare and severe kind of epilepsy that starts in childhood, often mentioned alongside Dravet syndrome. If you haven’t lived with it, the short version is that the seizures don’t really stop. Some days they come in clusters, one after another.
I’m writing this because a supplement called honokiol has helped Kamil more than anything we’ve tried in years, and I wish someone had told us about it sooner. I’m not a doctor. This is just what happened in our family.
One of New Jersey’s first medical marijuana patients
Kamil was one of the first medical marijuana patients in New Jersey, so I saw the program when it was brand new. Back then every patient really was a medical patient. Nobody in that waiting room was there to take the edge off a stressful week. People were sick.
Getting product was tough, and high-CBD strains were the hardest thing to find. I’d drive over an hour each way to the dispensary in Egg Harbor Township because that’s where I could get the highest CBD to THC ratios. We bought the state limit of 2 ounces every time, and every time it cost hundreds of dollars.
These days there’s an FDA-approved CBD medicine, Epidiolex, for both LGS and Dravet. Kamil tried it a few times. I know it helps some people, but it didn’t help him, and he was sensitive to it.
Making Rick Simpson Oil in my parents’ kitchen
I started making Rick Simpson Oil (RSO) in my parents’ kitchen. My mom took it over pretty quickly, and she’s the one who really perfected the evaporation and recovery process.
First I had to learn about decarboxylation. Raw cannabis is mostly THCA and CBDA, and it takes heat to turn them into THC and CBD. Knowing that and actually putting expensive flower in the oven are two different things, though. I remember feeling uneasy about it. Kamil needed something to stop the seizures that kept landing him in the hospital, and in my head, if I baked it wrong I’d be ruining the one thing that was helping him. With the price we were paying, there wasn’t much room for mistakes.
Eventually we got a Magical Butter machine, which made the whole thing a lot easier. Our process looked like this:
- Decarb 2 ounces of flower in the oven.
- Put it in the Magical Butter machine with a few cups of food-grade rectified spirit (Everclear).
- Run the machine. What comes out is a bright green alcohol carrying the cannabinoids Kamil needed.
- Strain it, then slowly evaporate the alcohol off.
- What’s left is a thick, black resin. That’s RSO, and it’s very potent.
If you ever try this yourself, be careful with the evaporating. Alcohol fumes catch fire easily, so do it somewhere with lots of air moving and nowhere near an open flame or a gas stove.
It kept him out of the hospital
Before cannabis, Kamil ended up in the hospital once or twice a year. At one point he even developed problems with his lungs from having so many seizures. Once he was on the oil, the hospital trips stopped.
It still wasn’t enough to get his seizures under control, though. He was doing better, but he was still having a lot of them.
How I found honokiol
Then my mom got sick with ovarian cancer. I did what I always do and went deep into research, reading everything I could find about compounds that fight cancer. She passed away very quickly, and she never got to try most of the things I found for her.
After we lost her, my dad was worn out by everything that had happened. He really needed something to go right.
Honokiol was one of the compounds I’d come across in all that reading. It comes from magnolia bark, and what caught my eye was how it acts in the brain. The only pharmaceutical Kamil used for his seizure clusters was diazepam, the drug sold as Valium. It always worked, but it’s not something you can take every day. Honokiol works on the same GABA-A receptors in the brain that diazepam does. That was enough for me to look into it seriously.
We started Kamil on Honopure, a honokiol supplement. He went from 100 to 200 seizures a month down to 10 to 20, and he has much better control over the ones he still has. The only other thing he takes is diazepam, for when he’s having a really bad moment.
Research is starting to move this way
In late 2024, researchers published a study in the journal Epilepsia on compounds from non-cannabis plants that are structurally similar to cannabinoids. Two of them were honokiol and magnolol, which both come from magnolia bark. They tested them in mouse models of Dravet syndrome and LGS. Magnolol reduced seizures in both. Honokiol got into the brain better than anything else they tested, but it didn’t make a significant difference in the one Dravet test they ran it through.
It’s mouse research, not a human trial, and it doesn’t prove anything about Kamil. Still, after all these years, it’s good to see the science start to catch up with what we’ve seen at home.
Two weeks with Kamil
Recently my dad went to Poland and Kamil stayed with me at my house for two weeks. Being with him all day, I noticed he was more likely to have a seizure when he got really excited and happy. That’s a frustrating thing to see. Being happy gets him worked up, and getting worked up can set off a seizure.
So when I saw him getting too excited, I tried something. In one browser tab I put on a YouTube video of moving shapes made for people with autism. In another tab I played binaural audio, which other people said helps keep their seizures away.
With both of them going, Kamil would lock onto the screen and his anxiety went away very quickly.
I know these are anecdotes. But there’s nothing wrong with anecdotes unless someone is using them to sell you something, and I’m not.
The video
Juggling two tabs got old very quickly, so I put the shapes and the binaural audio together into one video and put it on YouTube for anyone who wants it. You can also download it from this page if you’d rather play it on repeat. I recommend VLC. It’s free and its repeat option works well.
Binaural audio works best with headphones, since each ear needs to hear a slightly different tone. And one important thing: some people with epilepsy are photosensitive, meaning flashing light or strong patterns can trigger a seizure. If that’s true for the person you care for, check with their neurologist first, and watch closely the first time they see it.
If you’re in the same spot
If you’re caring for someone with LGS, Dravet or any epilepsy that won’t settle down, I hope some of this helps. Please talk to their neurologist before adding anything, honokiol included. It works on the same part of the brain as benzodiazepines like diazepam, so combining them is something to plan with a doctor, not on your own. For what it’s worth, Kamil has taken diazepam alongside honokiol with no interactions, but everyone is different.
If you want to ask me about anything we tried, use my contact page. I’m happy to share what I know.