CW: weight loss mention, weight number, exercise, medical neglect

Long description: Photo of Alex sitting on their sofa beside Saffi, a small brown hound. Alex is wearing a black tank top with a mock turtleneck, black pleather leggings, heavy black eyeglasses and dark red lipstick. They are smiling slightly and resting their right hand on their left knee, which is bent up toward their chest. They have their left arm around Saffi who is sitting upright and looking seriously at the camera.

Technically this is about a week late but since I haven’t figured out how to hack my experience of time to work like a normal human’s, it’ll have to do. Also, like basically everything I write, this is fucking long so…be forewarned.

This is the 2 year anniversary of my successful experiment with biohacking my narcolepsy.

In April 2016, I moved back in with my parents after (barely) finishing out a research contract and being unable to find any more work in part because my inability to stay conscious for most of the previous 5 years had kind of fucked up my productivity in a ‘publish or perish’ field, and in part because I was at a point where I needed to commit full-time to accessing diagnosis and care for the chronic illnesses I’d been struggling with since age 4, which had been getting progressively more debilitating.

In June of that year, my fourth sleep specialist threw up his hands after I reported experiencing concerning side effects on dexedrine, and told me that maybe I just needed to accept that this was what my life would be like now. I was sleeping upwards of 16 hours a day at the time and my Epworth Sleepiness Scale score was 22 or 23 (a score of more than 10 is considered pathological; 24 is the maximum). I was not allowed to drive. There was no functional public transit in my rural hometown. I literally could not leave the house unless my parents escorted me. I could slip from consciousness into REM sleep in under 30 seconds, regardless of where I was or what I was doing. Even when I was nominally awake, after sleeping for 16 hours, my brain functioned the way most people’s would after being deprived of sleep for about 72 hours.

In spring of 2017, I was lucky enough to find a new sleep specialist who was experienced in treating both narcolepsy and patients with complex medical histories, including Ehlers Danlos, which I had been diagnosed with a few months earlier. He put me on Vyvanse, which yielded better results with a more tolerable side effect profile than any of the other six drugs I’d been tried on at that point. My ESS score went down to 13 and I began sleeping between 9 and 13 hours a day. I still had no sleep cycle to speak of — some days I’d be awake from morning til evening, some days I’d wake up at midnight and go to sleep around noon. I lost about 40 pounds because it killed my appetite and made me feel nauseated pretty much all the time. There was about one week per month where it paradoxically seemed to make my hypersomnolence and cataplexy worse. But it was better than what I’d been dealing with before and there weren’t really any other medications available to me to try.

In January 2018 I was diagnosed with mast cell activation syndrome, which I’d suspected for a while. I was also starting to suspect that my narcolepsy was secondary to my mast cell disorder, because I remembered that a new narcolepsy drug that had been released while I was living in the UK targeted an unusual histamine receptor in the brain. The medication was proposed to work for a subpopulation of narcolepsy patients who have constitutively decreased histamine production in their brains. This seemed counterintuitive based on the fact that MCAS involves mast cells dumping histamine throughout the body at frequent and erratic intervals, but it seemed like too much of a coincidence.

I developed a hypothesis that what was happening to me was a complete dysregulation of the 24 hour cyclical signalling that normally happens through two different kinds of histamine receptors in the brain — the kind of receptor that’s targeted by the new narcolepsy drug, and the kind that’s targeted by old-fashioned allergy meds like Benadryl. This would explain why I was not only hypersomnolent, but had absolutely no discernible pattern to when my body tended to be awake and when it tended to sleep. I suspected that I needed to artificially re-establish this cyclical signalling by targeting one of these receptors during the night-time, and the other one during the day. Half of this equation was easy to solve — Benadryl is easy to come by. But the new narcolepsy drug hadn’t yet been approved for use anywhere in North America. So I did a lot of reading and eventually got lucky and found a plant that contains a chemical that targets the same histamine receptor in more or less the same way.

I started taking Benadryl at night in early April of 2018, and found that I began waking up feeling more rested and refreshed than I had in a very long time. I discontinued it briefly after my allergist told me I should because “it makes you fall asleep but doesn’t give you good quality sleep” and warned me about studies that had linked chronic use to dementia-like cognitive deficits. After a few days of waking up again feeling like I’d never rested at all, I did some more reading, discovered the studies he had mentioned were exclusively conducted in elderly people (who are more likely to have constitutively decreased cholinergic tone, kind of a significant thing in dementia), who were taking Benadryl during the daytime. I also reflected on the fact that when I asked him about a possible relationship between my narcolepsy and MCAS he dismissively told me he’d never heard of histamine playing a role in sleep-wake regulation. Ultimately, I decided against following the advice of a dude who a) clearly doesn’t know how to read studies critically and b) doesn’t know 101-level stuff about the neuroimmune effects of the condition he purports to be a world-leading expert in. I started taking the Benadryl again, and received my order of the experimental plant a couple weeks later. And within a few days, I was sleeping 7 to 8 hours a night, going to sleep and waking up at the same time every day, and waking up feeling refreshed which was honestly not a feeling I’d ever really experienced.

I kept quiet about it for a few months because I’d had a couple of false starts with other meds that seemed like they were working reasonably well for a few weeks, before the effect gradually faded away or the side effects took over. This time, that didn’t happen. I’ve been on this regimen for two years now. I sleep between 6 and 9 hours a night, depending on what time of year it is, if I had caffeine too late in the afternoon, if I’m having a chronic pain flare, and how stressed I am about other shit. Almost like a person with a normal brain. If I’m not having a flare of one of my other chronic illnesses, I wake up feeling…awake. My ESS score is now 2. I got my driver’s license back last spring. I drove the three hours from my hometown back to my current city over the holidays on my own. I still take a low dose of Vyvanse to help with concentration but now I can take it at doses low enough, and with frequent enough ‘med holidays,’ to minimize the side effect profile.

I’ve also begun hacking my other symptoms and body parts. About six months after starting my narcolepsy regimen, I discovered that mast cells release heparin. This is interesting because the first chronic illness I ever received a “diagnosis” for was idiopathic thrombocytopenic purpura — elevated bleeding and low platelets of unknown etiology — at age 4. I had been told many times by my doctors that my platelet counts were not low enough to cause spontaneous bleeding. When I pointed out that I did experience spontaneous bleeding though, they never seemed to hear me. They never responded, at least. Later, when I’d offer to show them the pictures of spontaneous hematomas I had stored on my phone, they’d decline and end the discussion. As it turns out, heparin not only prevents clotting, long-term exposure to it can also reduce platelet counts. I found a very old, admittedly low quality study that suggested vitamin C may antagonize heparin. So I started taking a moderately high daily dose of vitamin C. My haematologist warned me that she could not endorse my self-medication because “we’ve had patients who take these natural supplements and end up coming in with liver or bone marrow failure.” I agreed that self-medicine carries potential risks and asked what other alternatives she could offer me. She repeated that she could not endorse me self-medicating and ended the appointment.

When I was in the ER for an emergency appendectomy last April, they ordered a PFA test to check my platelet function before taking me into surgery. For the first time that I know of, my PFA came back normal.

Over the past year, I’ve started experimenting with some plants and supplements to improve my muscles’ tolerance of, and recovery to, fatigue and injury, in addition to my daily doses of off-the-shelf mast cell stabilizers and antihistamines. I have literally never been able to exercise without experiencing flu-like symptoms that would linger for days and gradually accumulate until I’d develop a persistent wheeze and muscle pain that would barely let me get out of bed. I’d finally give up, and then a few weeks or months later, hit the gym or the pool and start the whole cycle over again. I’m now wheeling on the paths and bike trails near my building twice a day (wearing a mask and during low-traffic times!), gradually building up the distance that I’m going each day. I’m feeling less pain and fatigue after my workouts each day which is literally not a thing I have ever experienced before. Right now I’m wheeling about 7 kilometers every day.

I think this will probably always be the accomplishment I am most proud of: having found a way to save myself in the face of decades of utter neglect from my healthcare. I am acutely aware of lucky I am to have succeeded in this endeavour; I know there are other chronically ill folks who are dealing with the same neglect and who have not been able to find self-medicine options that work for them. I’m also angry that I had to do it, and even angrier that most of my doctors seem to a) think I did it out of some misguided ideology rather than absolute desperation and b) take its success as evidence that I was making all my symptoms up in the first place. (Credit to my current sleep doctor who remains the one medical professional who fully acknowledges both the risks and necessity of my biohacking practice and does his best to support me in being safe with it.)

Moral of the story: gentrified biohacking is boring and very ten years ago; respect, honour and support the trans and disabled folks who are hacking their bodies in defiance of the systems that have been structured to let them wither and die.

Disability-led design & health justice. Director of Communications for The Disabled List. They / theirs. Tip jar: paypal.me/alexhaagaard

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