Our Journey With Narcolepsy

I wasn’t sure whether to write about this, since it’s not so much about me, but I talked to Sam about it and she told me I should. She reminded me that it’s as much a part of my story as it is a part of hers. It’s definitely a major part of what brought me to herbal medicine. Had it not been for her narcolepsy, I probably wouldn’t be where I am. Buckle up, kiddies…this is a long one.

We’ll begin at the beginning… Well, not the exact beginning, as that’s a very long and convoluted story for another time, but the “official” beginning. We got together in August of 2010, as we were both going through divorce proceedings from our previous spouses. We moved in together that following February (on Valentine’s Day, no less). When things fell through on our first place, we quickly found and fell in love with the house we live in today. On August 25th, 2011, we got married in our back yard, next to the water feature. It was just the wedding officiant (a dear friend of ours), a witness (Sam’s cousin) and us.
Shortly after the wedding, she found a job that was perfect for her. It started as a temporary painting and light construction job on a haunted attraction that was being done in a late 19th century mansion and some how turned into a job working as an Applied Bahavioral Analysis (ABA) Therapist for kids with severe autism. The haunt was a fundraiser for the school.
Initially, she was thriving in this job. She loved it. Gradually, though, she started struggling. She’d get sleepy at random times throughout the day. Not like, “Oh, I’m a little drowsy…maybe I’ll just drink a cup of coffee…” More like, “Holy shit! I don’t remember what just happened, I think I just blacked out for a few seconds!” She started pounding energy drinks on top of all of the coffee that we were drinking at that time. We thought that maybe we weren’t getting enough sleep, so we tried going to bed earlier, drinking more coffee, more energy drinks, etc. Nothing was helping. In fact, things started getting worse. She had always occasionally dropped things, or had her knees buckle, but never thought anything about it, but the longer she was working at this job, the more frequent these occurrence were becoming. I’d occasionally have to catch her when she’d either get upset, or when she’d laugh too hard about something funny. I’m not sure how many glasses and coffee cups were broken, where she’s just lose them. The look of total surprise and confusion on her face when this would happen was likely echoed on mine, as I was beginning to really get worried about her. After a few weeks of this, we decided something was definitely not right, and we started researching (as you do). Once we’d ruled out everything that said, “YOU’RE GONNA DIE!!” We came to the conclusion that this might be narcolepsy – more specifically, “narcolepsy with cataplexy.”
We made an appointment with our family doctor and told him what had been going on and that we were wondering if it wasn’t narcolepsy. He said he wasn’t an expert in neurology, but that he thought we might be right and referred us to a neurologist. In fact, he grabbed a directory of specialist, scanned through it and landed on a particular name, then proclaimed, “Yeah! This guy! He’s REALLY smart!”
So, off we went to the neurologist. They checked her out, explained what they knew about narcolepsy and said it was pretty likely that this was what was going on, but said they would need to do a sleep study in order to get a definitive diagnosis. They also explained that there were some medications that they could prescribe, but that they’d definitely have to have a diagnosis, first, before they could prescribe any of them, because they could only be prescribed for narcolepsy and they were very controlled…and very expensive.
They scheduled the sleep study for as soon as they could. It would involve her spending the night in the sleep lab with an assortment of wires attached to her to monitor all of her vitals. The following morning, they would keep her for a few hours and have her take a series of short naps. They’d monitor her to see how she progressed through the various stages of sleep, as well as monitor what was going on while she was awake.
I remember how nervous she was going in. She sometimes had trouble falling asleep at night, so she was worried about what would happen if she didn’t fall asleep, since it wasn’t our bed and I wasn’t going to be there. She was also worried that maybe it wasn’t narcolepsy at all. “What if I have a tumor or something!” “It’s not a tumor!” I said in my best Arnold impersonation (c’mon…you knew that was coming!).
Sure enough, an hour or two into the test, she called me in tears, “I’ve been here two hours and I still haven’t been able to fall asleep! How are they going to get any results if I can’t sleep!” A few minutes later, the sleep tech came in and assured her that everything would be OK. In fact, they’d registered her falling asleep six different times just in the short period of time that they had been monitoring her. Later, we learned that these are called “micro-sleeps,” and they are very specific to narcolepsy. The brain just shuts down and goes to sleep for a second or two, and if the person with narcolepsy notices at all, they usually register it as sort of “spacing out” for a few seconds.
Long story short, the diagnosis came back positive for narcolepsy with cataplexy. This is the piece of narcolepsy that is typically poked fun at in movies and on TV, and that everyone thinks is so funny…everyone, that is, with the exception of people with narcolepsy and their loved ones that have to watch it happening in real life. The impression given is that the person with narcolepsy has just randomly fallen asleep in their soup or whatever. The reality is that their body has shut down, but their mind is still active. When you are asleep and dreaming, your brain basically shuts down your motor control, so that you don’t act out your dream with your body. This is a good thing, so that when you are dreaming about giving a beat down to the giant evil squirrel who’s trying to steal your girlfriend to sacrifice her to the Acorn King, you aren’t actually giving your sleeping girlfriend a beat down, instead. Normally, this only happens when your are sleeping and dreaming. When someone has narcolepsy with cataplexy, the control mechanism for this “feature” is a bit wonky, almost like there are some crossed wires. Instead of firing off at the appropriate time, it will do it during moments of heightened emotion – anger, laughter, surprise, joy, etc. Cataplexy will happen in varying degrees, from a slight sensation of muscle weakness, all the way up to total body collapse. For Sam, it usually manifests as her knees giving out from under her or losing control of her hand, so she drops whatever she is holding. Fortunately, that doesn’t happen very often these days.

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The first thing the neurologist did, once the diagnosis came through was to prescribe a stimulant. As stimulants go, it was pretty bad-ass. It’s called Modafinil. According to one story we read, it was supposedly developed for test pilots who were flying extended missions where they would be in the air for something like thirty-six hours straight. Modafinil is now very popular among the over-achiever set, because it makes your brain go 90 miles a minute, like all of your synapses are firing at 110 percent. You’ll have brilliant ideas, brilliant conversations and you’ll do this into the wee hours of the morning…until you eventually crash.
 According to the literature, while you are taking Modafinil, you will be able to stay awake for an extended period of time, but should you want to go to sleep, you should still be able to do so. What they don’t tell you is that it has a half-life of about 15 hours and it should be cycled – one day on, one day off, three days on, 2 days off, etc. If you don’t cycle it, it stops working at the normal dose. If you have narcolepsy, that means…it stops working and you go from, “Hey! I’m awake all day, this is fantastic!” To “This shit is useless! It doesn’t work at all, anymore!” We found this out, not from a doctor or from reading sanctioned medical literature, but rather from reading posts on “druggy” forums, written by the aforementioned over-achievers, who’d gotten it illegally, or “legally” by way of some unscrupulous medical practitioner.
So, when the inevitable happened, they decided she needed another stimulant in addition to the Modafinil. What did they give her? Ritalin. Which is, essentially, a pharmaceutical grade methamphetamine. Imagine this scene, if you will: We walk into the pharmacy with prescriptions in hand. Hand over one prescription. Pharmacist looks at it. “OK.” Hand over the other prescription. Pharmacist looks at it…gets a puzzled look…looks up at us. Looks back at the two prescriptions, again. Looks back at us and says, “Which one do you want to fill?” Us: “Both.” Troubled pharmacist: “Okayyy…you just…umm…you want to make sure you don’t take both of these at the same time, because they’re both REALLY powerful stimulants. Are you sure you’re supposed to take both of these?!” Sam: “Yes…I have narcolepsy…” Pharmacist: “Ohhhhh. Gotcha.” Poor guy…
Once they got her settled with the stimulants, things seemed to be going fine, for a while. She continued working. The stimulants were helping a little, but she was still struggling. Finally, she had to make a decision that was in the best interest of both herself and the kids she worked with. She had to quit. It was heartbreaking. She’d finally found a job that she loved doing and was really good at, and her body was betraying her. To say she was devastated would be an understatement.
We were both pretty bummed by the whole situation and to compensate, we employed a combination of “shopping therapy” and “partying therapy”… Interesting fact about Ritalin: One of it’s (many) side-effects is that it can cause “impulsive behavior…” Another interesting fact: Ritalin has a chemical structure similar to that of cocaine. When Ritalin and booze meet in your tummy, they have a crazy party in there, which increases the cocaine-like effects. She was off the hook. And, due to both of our very empathic nature, I was along for the ride and doing my level best to keep up (I was definitely doing my part to keep the energy drink industry in business…). That was a crazy summer…took us a couple of years to recover, to be honest. We learned a lot about ourselves that summer, though…mostly about what we don’t want.
Ritalin on the left, cocaine on the right.
Alongside that process, they prescribed her Xyrem. Xyrem is the trade name of what’s was strategically renamed as “sodium oxybate.” Before it was strategically renamed, it was (and still is) known as Gamma-Hydroxybutyrate, aka, “GHB”…aka, “date rape drug” (more correctly, “one of the date rape drugs” There are many out there…).
GHB used to be available at your local health food and supplement stores. It was (and still is) commonly used by body builders, due to it’s ability to release a small amount of growth hormone, which helps weight lifters get a “bigger pump,” or “more gains,” or some other such nonsense. From what I’ve read, it’s success is limited, at best. However, it was pulled from the shelves some years ago and placed on DEA’s Schedule I, after it was found to have been connected to several date rape cases.
As much as I’ve read that these claims were unfounded, from what I’ve personally experienced, second hand, I can definitely see it’s potential for that kind of misuse. At the doses she was required to take, Xyrem essentially would put her into a near comatose state. If we were to have had any kind of emergency while she was medicated, I’d have had to carry her out, as there would have been no chance of waking her. And most of the time, it worked very fast. When she first started taking it, we would frequently misjudge how quickly it was going to work. It’s fairly common for people with narcolepsy to have a relatively slow digestive system. When Sam takes medicines or herbs, it often takes nearly twice as long for her to start feeling the effects than it does for me. So, although the instructions said to take the Xyrem and get right into bed, we did otherwise. She would take it, then we would sit down on the couch, have a snack, talk for a bit, and when she’d start to feel it working, then we’d head off to bed. The problem with this approach is that, more often than not, she’d start to feel it, get a little loopy, get hungry, start to fix herself a snack, then…out like a light. The first time this happened, we were sitting on our back porch. She passed out in a chair and was slumped in what looked like a very awkward and uncomfortable position. I started trying to wake her up enough to get her upstairs and into bed. NOPE. When I started to pick her up, she came to, a little…then freaked out and started fighting me. I tried to calmly explain that she’d fallen asleep in the chair and we needed to get her into bed. She’d hear nothing of it. She was “fine.” Finally, after much pushing, pulling and arguing, I got her up the stairs, but then she needed to use the bathroom…and promptly passed out on the toilet. After a little coaxing, she got up from there and proceeded to lie down on the floor. So, I picked her up from the floor and got her onto the bed. Then made the mistake of trying to undress her. Cue the PTSD flashback… She started screaming while flailing her arms and legs. I freaked out and started worrying that she was going to hurt herself…or me…or both… So, without considering the nature of the trauma that was causing her to lose her shit, I decided it would be a good idea to restrain her. This obviously did not improve the situation. She continued struggling, while using the full range of her considerable knowledge of swears. I think she was using words that even I didn’t know and I spent eight years in the infantry. I eventually realized my mistake and let go of her. I can’t recall if she calmed down, or if she just passed out, but I remember being so freaked out by the whole incident that I ended up staying awake just watching her for a couple of hours, terrified that something bad was going to happen. She was not conscious through any of this. Afterward, she had very vague recollections of what happened, but wasn’t seeing me as “my husband who’s trying to help me,” but as a threat that needed to be eliminated.
I think this first major incident set off a huge sense of anxiety, for me, around Xyrem. Every time she’d pass out, downstairs, I’d kill myself trying to get her upstairs and into bed. Even if she’d pass out on the couch. Rather than just covering her up and putting a pillow under her head, I’d either prop her up on her feet and struggle with her to get her up the stairs, or just pick her up and carry her.
Sometimes, that worked out OK. More often, though, she’d start have flashbacks and would fight me the whole way. Sometimes it was funny. She’d go from dead asleep and snoring to eyes wide open as soon as I tried to lift her. “I’m fine! Let me go!” After which she would either flop back onto the couch and go back to sleep, or open her computer and start absently looking at…well…pretty much nothing, because her eyes would usually close while she was scrolling with her mouse, or she would get up and wander into the kitchen and just start swaying back and forth, occasionally opening the fridge, opening and closing cabinets. Finally, I’d either convince her to go up the stairs, or end up dragging her up, usually one step at a time, as she would try to hold on to the railing. Usually, by the time I got her to the landing, she’d stop fighting and take the rest of the stairs on her own, then dive onto the bed. Then I just had to shuffle her around until she was laying mostly in the right spot. I can’t tell you how many nights we spent sleeping the wrong way on the bed.
Finally, we had a talk about it all. All of the worry was starting to get to me. I spent several nights in tears from trying to get her into bed. She was feeling terrible for how she treated me during these occurrences, but also frustrated with me, for not just letting her sleep it off on the couch. We started getting better about getting into bed right as she was taking the medicine. When we didn’t and I’d notice her starting to nod off, I’d suggest we head upstairs and she’d immediately get up and jump in bed, instead of telling me she was fine. On the rare occasion that we’d misjudge things, and she fell asleep on the couch, I’d just make sure she was as comfortable as I could get her, and then I’d lay down on the couch with her. I still couldn’t bring myself to leave her there, alone. I’m not exactly sure what I thought might happen in our living room, but I’d worry. I think part of it was also the fact that I am so hopelessly in love with this woman that it felt “wrong” not to be sleeping in the same room with her.

When “that summer” (how we refer to it, to this day) ended, we went into winter hibernation.  This has become a yearly tradition, ever since that year. We pretty much avoided everyone, stopped socializing, stopped drinking alcohol, and just holed ourselves up in the house. We threw ourselves, full force, into researching, reading and studying. As we do everything together, we held each other’s hand and jumped into a deep dark pit of doom and despair. We even ended up falling down a few rabbit holes and ended up in the land of conspiracy theories. At one point, that winter, we started “prepping.” By the time we stopped, we had several months worth of non-perishable food stashed away in our cellar. This was a very dark period for us, but we both feel like it was necessary. Fortunately, it didn’t go on for years, as by the following summer, we finally came to the conclusion that, although the world definitely sucks, it really doesn’t suck any more now, than it ever has, and that worrying about and hiding from it isn’t going to make it any better. Had it not been for that brief journey down the conspiracy rabbit hole, we might never have found our way to Gordon White and the Rune Soup crowd, which, honestly, played a big part in bringing us back out into the light of day.
As our descent into our mutual “Dark Night of the Soul” began, Sam decided she wanted to be done with the stimulant drugs. So I started researching herbs that might be able to replace them. I’d had a passing interest in herbs for years, so I knew about a few things, so one rabbit hole, lead to another, and another and so on.
I knew that stimulants could potentially increase anxiety, so I had to pay close attention to all of various effects, to make sure I wasn’t treating one issue and exacerbating another. I was ordering shit-tons of different herbs and trying them all on myself first, then on her. We eventually decided to try Yerba Mate in place of our beloved coffee, since the coffee was causing us both to be jittery and to have an acid stomach. We found that the mate produced the same wake-up energy as the coffee, without the jitters or the upset stomach.
One by one, I added herbs to our morning “tea,” constantly tweaking and adjusting, adding and omitting different herbs until I had just the right combination. Eventually, I settled on a combination of Yerba Mate, Horny Goat Weed, Damiana and White Willow Bark. That was a start. From there, I found a few more herbs – some as whole herbs, some as extracts, which I made into capsules. Some of the herbs were to combat the day-time sleepiness, and some were specific to the anxiety and depression. Other things were added for general health and well-being – tonics, essentially. Still more herbs and supplements were added to control pain, improve joint health, aid in nutrient absorption, etc.
Various things were tried and dropped, then brought back. Sometimes I would forget to order something that we were taking regularly, and then just not reorder it for months, then we’d suddenly realize that something that seemed to have gone away was coming back. We’d look back at when it stopped and when it came back and realized that the thing I’d dropped was actually helping, even though we didn’t really notice it was doing anything.
Through trial and error, we eventually got to where we are now. What follows is now our daily regimen. It also includes the herbs we’ve added from the Buhner Protocol for Lyme Disease (I’ll note those, so they don’t get confused with the ones specifically for narcolepsy). I take all the same stuff, as they benefit me, as well, just on a different level.
Each morning, I lay out six half-pint Mason jars and four two ounce medicine bottles. I fill each jar and bottle about two thirds full of water, then add the following…
 
In the mason jars:
One scoop of 10 Blend Mushroom Extract Powder (General health tonic, but also helps with Lyme issues.)
About a quarter teaspoon of Guarana Seed Powder (…’cause, caffeine… Sometimes more, depending on the day…in addition to being a stimulant, this also potentiates other herbs and helps to prevent “kratom headaches”…which is occasionally happens for some people with certain strains, and is awful. Happened once. Caffeine fixed it. Will not happen again.)
2600mg. Of L-Arganine Alpha-Ketoglutarate powder (Excellent source of energy. Also boosts the immune system and encourages the production of collagen for tissue repair. Primarily added for repairing damage done by Lyme bacteria, but also useful for Sam’s issues. It also increases blood flow.)
500 mg. Mucuna Pruriens Extract (Dopamine support. Helps with anxiety and depression.)
Approximately 500 mg. L-Theanine (To the first to jars and the two medicine bottles, mentioned below. Helps with concentration and focus. Very calming. Typically included in commercially available sleep aides for its calming effects, but we find it more helpful in the wake-up blends.)
500-1000mg. Horny Goat Weed Extract (Again, depending on the day… In addition to being one of the few clinically proven natural aphrodisiacs, this is a CNS stimulant. Not only does this herb help to fight fatigue, it improves blood flow, and supports both the heart and the liver.)
1000mg. Taurine (MORE ENERGY.)
1000mg. Eleuthero Extract or Panax Ginseng Leaf Extract (Depending on which I’ve decided to order that week. This is added primarily to support the immune system, but also helps with managing stress.)
100mg. Ginkgo Extract (Improves blood flow, pariticularly in the brain. Supports brain health, memory, and the CNS. Primarily added for brain and CNS-related Lyme issues.)
500mg. Cat’s Claw Extract (Part of the Buhner Protocol for Lyme Disease. Potent anti-inflammatory and supports the immune system.)
500mg. Japanese Knotweed Extract. (Buhner Protocol. Included for endothelial protection.)
One full teaspoon of Andrographis powder (aka – kalmegh, aka – “King of Bitters”…aptly named… Buhner Protocol. Included primarily as an “antispirochetal”, but also helps to boost cognitive function, fights off other infections and supports the liver, amongst a host of other benefits.)
1/2 teaspoon of Burdock Root extract (More liver protection. Gotta protect the liver!)
1/2 teaspoon Red Vein Kratom Powder (see my Pharmacopoeia article on this herb)
1/2 teaspoon Green Vein Kratom Powder
1/2 teaspoon Gold Vein Kratom Powder
1/2 teaspoon Kratom Stem and Vein Powder
About 1/8 teaspoon of citric acid (supposed to help break down the kratom, mostly it just cuts the bitterness of everything else and makes it easier to stomach the taste).
 
To two of the medicine bottles:
Everything listed above, with the exception of the mushroom extract, the Cat’s Claw, Knotweed, Andrographis and Burdock (we’ll get to the last two medicine bottles in a bit…).
The first two jars are usually held over for the first thing in the morning when we roll out of bed, usually 5am, hence the two medicine bottles. The two medicine bottles are sort of the “mid morning booster.  For me, that’s right around four hours later, shortly after I get to work. For Sam, it’s a little later, on most days.
The remaining jars are usually taken in four hour increments, throughout the day, and manage to keep us both going, most days. On bad days, or days that we might be up earlier, due to pain or weird acting gig schedules for Sam, we will occasionally throw in a booster dose or two.
These usually just contain some Guarana, Horny Goat Weed, L-Theanine, Taurine and a low dose of green and gold Kratom. And that’s how you keep a person with narcolepsy and a person with Lyme Disease awake for a day.
Initially, we were both OK with Sam just ditching the stimulants and staying on the Xyrem. However, there was an elephant in the room that we’d both kept ignoring. Those that know Sam, know her as a very vivacious, talented and creative individual. She loves to paint, draw, write, act, sing and play music. In fact, she’s about as close as I’ve ever come to a musical genius.
When we got together, there was rarely a day that I would come home from work and not find her with either her hands in the dirt, or covered in paint or some other substance, depending on her creative medium of choice for the given day. When she started taking Xyrem, this slowly began to happen less and less, until finally, it stopped all together. She no longer had the urge to create.
Not coincidentally, she also stopped telling me about all of the fantastical dreams she was having. In fact, she eventually told me that she rarely remembered having any dreams at all, anymore. I had grown used to hearing her joyful laughter as she dreamt in the mornings, or having her “narrate” parts of her dreams, as she continued to sleep and dream while I was trying to wake her. All of that had stopped.
At first, she tried to mitigate this by only taking one small dose, each night, instead of the recommended one dose at bed time, and one more dose four hours later. That helped some, but often resulted in her waking up after only four hours of sleep and not being able to get back to sleep. I’d often wake up to find her in frustrated tears, because she was so tired, but couldn’t get back to sleep.
Finally, she decided to give it up completely. It was rough, to begin with. She had many nights of very little sleep. Initially, I tried a combination of sleep-inducing herbs, brewed into a tea. I tried Jamaican Dogwood Bark, Lavender, Hops, California Poppy, Wild Dagga, St. John’s Wort, Passion Flower, and Skullcap.
I tried all of these herbs on their own, in various combinations, and then all together. I’d be drooling and nodding off after one cup (which was tough, cause that shit was nasty bitter), and she would be feeling a little relaxed, but that was about it.
In addition to the tea, I was combining a few herbal extracts (mixed up in those final two bottles, mentioned above) that we had on hand, that I knew were known to be sleep-inducing – notably, Kava Kava, Magnolia Bark and 5-htp (incidentally, all three of these are great for controlling anxiety, as well). At the time, I had suggested that we add some red vein Kratom, but she wanted to try everything else on their own, before adding that in, to ensure that there weren’t any residual effects from the Xyrem that might cause problems.
This combination seemed to help a little bit, but she was only getting a short period of actual sleep, then she’d end up laying awake for hours. We eventually added the Kratom, while I continued to research. In so doing, I stumbled upon GABA (Gamma-Aminobutyric Acid).
 
GABA is an amino acid that is made in the brain. As a supplement, it’s often used for treating anxiety, improving mood, reducing PMS symptoms, treating ADHD, and also for promoting lean muscle growth, burning fat, stabilizing blood pressure, and releiving pain. Additionally, it helps with sleep issues. As it turns out, Xyrem is a GABA receptor agonist.
Needless to say, when I found that info, I perked up and quickly ordered a bottle of GABA powder. I researched more on what it does, how it should be taken, when it should be taken, etc. I found that, although the recommended dose is 1/4 teaspoon, most people who were using it to treat sleep disorders were taking up to 1/2 teaspoon.
They also warned to start with a lower dose and titrate up, as the physical effects that occur as the GABA enters the blood stream can be a bit…disturbing… Unfortunately, I didn’t learn about these “disturbing” physical effects or the suggestion to titrate up to the 1/2 teaspoon dose until after we’d tried it and I was scrambling to search the interwebs to determine whether or not we were dying…
Picture this, if you will: I hand my lovely Sam her newly formulated nightly sleep potion. She drinks it. All appears to be fine. I drink my own, of the exact same formula. I start feeling something first, because, my digestive system works faster.
Huh….weird. My face, arms and legs are starting to feel all “pins and needles”….and ::GASP:: ::YAWN:: That was weird. Meh. Probably nothing… I continue reading.
All of sudden…Sam: “I feel weird…I don’t feel good…I DON’T FEEL GOOD AT ALL! OH MY GAWD! I CAN’T BREATH RIGHT! WHAT IS THIS TINGLING! HOLY SHIT I’M DYING! WHAT THE FUCK IS GOING ON?!”
Now we’re both panicking. She, because her husband has surely accidentally poisoned her, and me, because I’ve clearly murdered my favorite human. So, I breathe and calm down and do my best to calm her down, while I research side effects of GABA.
Ohhhh…I probably shouldn’t have started us off on a 1/2 teaspoon, right off the bat. “Uh…sorry, babe… Please don’t kill me…”
Once we’d determined that this was “normal” and that we weren’t going to die, we both calmed down and relaxed. The weird tingling and the gasping for breath eventually subsided. This calming may have also been partially the result of the GABA itself, as we also both began to feel very sleepy. We crawled up into bed and both of us were asleep in minutes. This was a good sign. The down side was that Sam awoke about 4 hours later and was unable to get back to sleep. After about a week of this, we went ahead and added the red vein kratom. This seems to have been the final missing piece, as she then began sleeping through the night.
And that brings us closer to the present day. Taking Xyrem out of the equation brought on so many realizations. The main one, for Sam was that narcolepsy is part of who she is as a person. That said, it does not define her, but rather it’s a part of the big picture. It also doesn’t detract from her life, but rather bestows a number of “gifts” upon her. One of her considerable talents comes from having one foot in the waking world and one in the “dream world.” Because of this, she has a particular mastery of non-ordinary reality. In addition to having a natural ability for lucid dreaming, she can easily slip into a trance state without the use of any sonic drivers (drumming, chanting, etc.) and without the aid of any plant allies.
After we dropped Xyrem, Sam’s creativity came back with a vengeance. Once we got the sleep blend worked out, she immediately started dreaming again. With the dreams, came writing, then drawing, painting, acting, music… This process was further accelerated after she had a shamanic healing with the wonderful Langston Kahn of Occupy Your Heart (I’ll write more about this process, later, once I receive the feedback from my own work with Langston).
For me, narcolepsy marks the place where I began to seriously focus on becoming and being a healer. This is the point in our timeline where I began to understand how terribly bad pharma medicines can be (some are still indispensable, but most are garbage, at best, and dangerous, at worst). This is where I began to realize just how amazing the natural world can be. The planet is covered with living medicines! Chances are, the medicine you need is growing just outside your back door.