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Keeping Monkey Neurons On Their Toes: An Interview with Allison Jackson

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Allison Jackson is thirty years old and lives on the border between Washington and Idaho. Allison has epilepsy and has used cannabis to control her seizures for several years. She is currently doing repairs and warranties for a river supply company. Born in Colorado, she moved around a lot as a child but ended up finishing high school in Hawaii. She spent many summers as a teenager on the Salmon River in Idaho, the largest wilderness area in the contiguous United States. Being and working on the river, including leading tours into the wilderness, is what she loves best. I interviewed Allison on the phone the other day and was immediately struck by her infectious enthusiasm for this outdoor life. If I wasn’t such a city girl, I’d be tempted to hop on a plane and let her lead me right into the beautiful country she describes.

 

INTERVIEWER

 

I’m so excited to finally be talking to you! I’ve read your fine blog for years and have to admit that hearing you write about your experiences with epilepsy is something I’ve always looked forward to, even though I hate that you’ve had to struggle so much. My own daughter with epilepsy is severely disabled and can’t talk, so I really never know what she feels, and your words help me to understand what she might be going through. I also really love the music you listen to and post on the blog and have made some discoveries through you!

 

ALLISON

 

I’m actually terrible with dates and time and planning and haven’t written regularly on my blog for years, but I’ve loved our connection, too.

 

INTERVIEWER

 

Let’s get started. Tell me a little bit about your childhood, how you became so involved with the river and working on it.

 

ALLISON

 

Well, when I was a kid all I wanted was to be a pilot. Then I decided that I’d be a marine biologist. I fell in love with wilderness things when I was really young, though, and river psychology — well –it just happened. When I was sixteen years old, I called the outfitter in Idaho that we had worked for as a family for many summers, and that was it. Every summer after that I worked on the Salmon River. Basically, all of our trips start at one end of the wilderness where the road ends and then five or six days later pick up where the road starts up again.

 

MF14UncleDano

Allison and her beloved uncle

 

INTERVIEWER

 

When did you first start having seizures?

 

ALLISON

 

I had my first generalized tonic-clonic seizure when I was fourteen years old, but I’d probably been having smaller simple partial seizures for some time before that. I wasn’t put on medications right away because we just thought it was a fluke. We were basically in denial. I was a competitive swimmer at the time, though, and when I had a second big seizure at school, I had the full gamut of testing to see what was up.

 

INTERVIEWER

 

For our readers who might not know, a tonic-clonic seizure used to be called a grand mal seizure and is pretty scary. The simple partial seizures that you might have been having for a while are sometimes so small that people mistake them for spaciness. What happened when they finally diagnosed you? Were you able to keep swimming on the team?

 

ALLISON

 

Well, I was put on my first drug, Trileptal. That was what I now call the “beginning of the end.” From that point, I was on “the six-month train,” meaning I had a big seizure every six months or so. They let me stay on the swim team the first two years, but then the six-month train became the four-month train, and I they wouldn’t let me swim anymore. I was the captain of the swim team at the time, and it was a huge part of my identity. We were state champions, and I was planning on swimming in college.

 

INTERVIEWER

 

Oh, how awful for you. Were you still on Trileptal? How did that big change in who you were and what you did affect you?

 

ALLISON

 

Fortunately, the canoe paddling team took me, and I got to do that my senior year in high school which helped me to stay occupied and not fall into some deep depression. At that time, I was still on just Trileptal, but it wasn’t working as well. I started taking all different drugs, but nothing worked. I was having seizures every other month or so and then every two weeks. Finally, the drug Lamictal worked for me and gave me a semblance of normalcy for a good many years.

 

INTERVIEWER

 

You had what people in the epilepsy world call a “honeymoon period,” when the drugs control the seizures for a period of time before the body gets habituated, right, and they return?

 

ALLISON

 

Exactly. The Lamictal began to not be so effective, and on top of that my kidneys started showing the effects of processing the chemical. The docs were concerned enough about the numbers that they urged me to try something different. I was on the maximum dose of Lamictal, though, and as it lost its effectiveness, I was in the ER all the time. It was awful. I’d go into status and then be pumped up with benzos, and every time they sent me out the door, I’d start seizing again.

 

INTERVIEWER

 

Just to clarify for those who might not be familiar with the terms, “status” is when a seizure doesn’t stop and is often life-threatening. You were having so many status episodes that you were continuously in the ER. In order to stop those seizures, the standard remedy is a powerful narcotic. Those are the benzos, and while sedating, they’re also highly addictive.

 

ALLISON

 

Yes, and I don’t know if I was rebounding off of the benzos or what, but in the hospital setting you get loaded up on them. I had been taking them already in order to try to control the seizures I was having, and I’d built up a tolerance, I guess. Somewhere in there I got the vagal nerve stimulator which really didn’t work and even had a second surgical workup.

 

INTERVIEWER

 

Wow. So you were a surgical candidate?

 

ALLISON

 

Actually and unfortunately, no. They found out that I had multifocal seizures, which basically means that I was seizing in two different areas of the brain, so they couldn’t operate. I was just a mess.

 

INTERVIEWER

 

I’m assuming that this was about the time that you decided to try cannabis?

 

ALLISON

 

Actually, I was just out of the ICU again and learned that while I’d been in that time, my family had been warned that I might die. The hospital people had actually asked them what “my wishes” were in preparation for dying. That just about killed me, to tell you the truth. I felt complete despair that I was putting my family through so much anguish and had nowhere to turn. I was seeing really great epileptologists, and they were at a loss. What else could I do?

 

INTERVIEWER

 

What did you do?

 

ALLISON

 

Well, I had gone to school in Colorado, and one of my best friends was still there. I called her that week and told her what was happening and how afraid I was, how I didn’t feel equipped to fight anymore or to get better. My friend told me about her friends in Colorado who had just opened a dispensary. That was when I heard about CBD. I was able to start taking it, and it was basically the only variable that changed in my life at the time so the results were going to be clear.

 

INTERVIEWER

 

I guess this will be what the docs call “anecdotal.” Right? What happened?

 

ALLISON

 

Well, first of all, the effects weren’t immediate. Gradually, though, after starting the CBD, the seizures were less severe and then fewer and farther between. I had started with a tincture and used only ½ a dropper. The dispensary had given me their highest concentration, so I started and stuck with that. I knew there were higher strengths out there, but it was important for me to just stick with one thing, start slow and see how it went. Things definitely began to improve, so I left it there, used that same regimen for at least an hour and a half. Every once in awhile, I added some THCa or CBDa when it was available. I had no more status seizures after that.

 

INTERVIEWER

 

Wow! I almost feel like I should repeat that! You had no more episodes of status after beginning CBD. That’s some significant improvement given what you told me about being near death such a short time before.

 

ALLISON

 

Yes. Prior to beginning CBD, I had been in the hospital ICU twice. I was in once overnight and then for almost a week for the prolonged and recurrent seizures that I told you about. At the time, I was considered the most “frequent flier” at our local emergency room. This was all about four years ago, and after one year on CBD I basically went from having at least two or three tonic-clonic seizures a week to one every few months.

 

INTERVIEWER

 

What was happening with the other drugs you were on? And what did your doctors think?

 

ALLISON

 

I kept everything the same as far as pharmaceuticals go, but we began to wean them after I’d been literally seizure-free for as long as a year. I never quite halved the doses of the anti-epileptic drugs, but I nearly did so, and since I’m on the same drug that my kidneys won’t tolerate at high doses, it inspires an extra level of security, if only psychologically. I was seizure-free for over a year and a half when I had a breakthrough. Then I went nine months or so and had another one.

 

INTERVIEWER

 

Incredible. What did your neurologist say? Was he involved?

 

ALLISON

 

The neurologist directed me to cut the drugs by one-half when I was about two years into treatment. Initially, I didn’t consult with him whatsoever as far as the cannabis. My doctor is in Washington, and while he doesn’t do a lot of consulting or dosing about cannabis, he’s open-minded to it. He takes a lot of notes and isn’t disregarding it.

 

INTERVIEWER

 

It’s been really great hearing your story, Allison. Do you have anything else that you’d like to add? I’d love to hear a testimonial to what cannabis is doing and has done for you. Something tells me that your history, even, as a botanist and wilderness lover, comes into play.

 

ALLISON

 

Exactly! My school training is botany. I’m a plant scientist. That’s the thing now. I couldn’t believe that I was able to go so long on the exact same routine without a seizure breakthrough. With pharmaceuticals, I’d do well for a bit and then came the seizure breakthroughs. It got so bad that my family and I thought I might not make it and that another trip to the ICU was going to be the one where I died. What happened with cannabis is that I basically picked a tincture and used the same one with the same formulation. Anything that you can become habituated to can only be good for so long. Whole plant medicine has been integral in my ability to control breakthrough seizures, as I’ve been lucky enough to sense ahead of time when things are starting to feel wonky. Adding THC and/or THCa with CBD seems to be far more effective than just adding more CBD to my routine. Having it available, along with the spectrum of other cannabinoids, on a PRN basis has proven to be helpful so far in prolonging the time between breakthroughs. During the day, I can take CBD and still be fully functioning, and at night, I can take THC to sleep. 

 

INTERVIEWER

It’s been my experience as well in treating my daughter’s epilepsy that we shake things up every now and then for optimal benefits. It’s frustrating to read all the time about these states that are passing way too restrictive CBD-only laws because it’s the whole plant medicine that works the most effectively.

ALLISON

 

CBD is a solid right jab in the boxing match with epilepsy, but as with any formidable opponent, you need to throw a left hook now and then to keep them honest. THC and THCa are the ‘left hooks’ in my arsenal. They’re more effective than just adding more CBD to the routine and most effective with a full spectrum of cannabinoids rather than as THC or THCa alone.  Sorry for such a pugilistic analogy, but it does feel like fighting doesn’t it? Whole plant medicine keeps the monkey neurons on their toes!

 

INTERVIEWER

 

I love the idea of mindfulness inherent in that statement about monkey neurons. And yes, even, to all the fighting analogies. It’s great information, Allison, and I’m certain someone reading this interview will find it helpful. I can’t wait to one day visit the Salmon River and have you guide me down it in a kayak! Thank you so much for sharing your story. What’s next for you?

 

ALLISON

 

You know what? Cannabis has changed my life. It’s given me my life back. I’ve started kayaking again. When I hit nine months being seizure-free, I started kayaking again. I never dreamed this would happen. I was at the end of my literal rope four years ago. Something came along and put a bunch of slack in it. The timing was awesome.

 

TrailerParkBoysandGirl13Dec2015 033

 

 

 

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