Zombie Research Institute
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Zombie Research Institute
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My Story
Edited from my original website October 16, 2007
I got my BS in biology in 1985, back then I wanted to study neuroscience. I found school difficult though, had problems falling asleep in class- if I had only known then what I know now. I graduated and fell asleep at various jobs instead. Ten years ago I went to library school, spent some time as a contract researcher doing search engine studies, then worked for a while as a librarian at a pharmaceutical firm. For the last few years I have been unemployed and remodeling my house. I have always studied the brain as a hobby though.
My problems really started last year around November. I finished off a bunch of house projects and was going to sit inside for the winter and write a thesis on depression. I got all my books and articles together and never could get any further than that. I slept and surfed the web. For months. At first I thought it was withdrawal- I had been taking phentermine for a while before that, and knew I'd be tired at first. After 2 months I figured I was physically depressed. But I wasn't emotionally distressed. I was happy, I wanted to do stuff, I just couldn't do any of it. So I figured it was seasonal affective disorder, our winter was so harsh last year. It gets really dark here in Seattle, and we had record breaking rain and storms. When March rolled around, the sun came out, and I still couldn't do anything, I looked for a psychiatrist. I knew I really was sick because I didn't go to the thrift store and shop for junk even once all winter!
After 30 phone calls I got an appointment with the only available doctor in May. Waited 6 more weeks. When I finally got there I told him what was happening, he offered me Xanax. I told him I wasn't depressed or anxious, I had been depressed before and this was different, I have no stress and a wonderful life now, just needed some medication so I could have more energy. He rolled his eyes and insinuated I was in denial and defiant and made notes of that. He strung me along for 2 months, adding all kinds of things to my possible diagnosis- OCD, bipolar, whatever- but wouldn't give me any drugs because he needed the "correct differential". (Funny, he offered me Xanax in the first session!) By this time my cognitive skills were noticeably declining. I was having a hard time driving. Anyhow, I was searching the internet and came across the definition of Idiopathic Hypersomnia. It's similar to narcolepsy without cataplexy. I took it to him, told him I had been like that all my life, and that it must have something to do with my current problems. He looked me straight in the eye and said "How exactly does this differ from plain everyday laziness?" I was speechless. I left his office and made an appointment with a sleep specialist.
A couple weeks later I went to the sleep clinic. In the meantime I did some research and decided that since I snored and IH is rare, I probably had apnea and my problems were caused by a cumulative lack of oxygen. I told the doctor all about the sleepiness throughout my life, and he mentioned narcolepsy as a possibility, and scheduled a sleep study. I got in the next day because of a cancelled appointment. I called back about the follow up for CPAP and they said I didn't need it. So I got busy researching narcolepsy.
In the meantime, my cognitive skills were declining rapidly. It started by just feeling kind of stoned when driving, not being able to concentrate on the other cars. Then I couldn't listen to the radio and drive at the same time. That was strange. My ability to sequence things went next. I couldn't plan a project, or remember to bring up the clothes from the basement after I took down the garbage, stuff like that. I would start something and then find myself doing something else. Then I had a real hard time with word recall. Long pauses when speaking. After a while I couldn't do simple math. I wanted to build a railing for my porch stairs, but couldn't figure out the angle or how many rails I would need. Later, my sister bought a farm and I couldn't figure out what her 10% down payment would be. Eventually I had no short term memory. Seriously. None. I would feed my dog, she would eat the food, and I would come back, see the empty bowl, and not know if I fed her. I couldn't tell you the day or date. Driving was out of the question. Taking a shower was a major undertaking- soap, shampoo, conditioner and rinsing was three steps too many, I just stood under the water and spaced out. I was becoming a danger to myself. I could have easily walked away from my stove and burned the house down.
The frustrating thing was I was completely aware of what was happening. I took notes. I kept a diagnostic list: impaired geospatial skills, divided attention, working memory etc. When I told my sleep doctor, he told me it was excessive sleepiness. I told him I've been falling asleep in public for 40 years, I could always think before, and this was different. He ignored me and gave me ritalin. The ritalin didn't help and made my handwriting very small. Now I've learned that's a symptom of Parkinson's, but when I told him about it he said nothing, just gave me a scrip for dexedrine. Those were even worse. I sat immobile for hours, and then couldn't sleep, or even close my eyes all night. By the time I figured out what was happening I was literally a zombie.
I just started doing random keyword combinations and following the threads. Like I said, I didn't have much memory, and I kept forgetting what I wanted to look up next. I even lost track between cutting and pasting info into my documents! It was an ironic version of hell for me, not being able to do internet research. When I looked up the gene for narcolepsy I found it was also associated with gluten sensitivity. I put it together with the fact that I had been mostly free of narcoleptic symptoms since following the Atkins diet and immediately started a gluten-free diet instead.
After three days I managed to get through a shower without missing one of the steps. Within 3 weeks of starting the gluten-free diet the sleepiness, cognitive, and motivational problems reversed almost completely. I could drive safely and started working around the house again.
Then I found the antigliadin-synapsin study and thought I really might be on to something. I was amazed to have found a connection between gluten antibodies and a protein involved with neurotransmitter release. My hypothesis had a possible mechanism. I researched the metabolic pathways, found more evidence, and started writing a whole new thesis.
I notice these things now that they are improving: My face has relaxed. Some of my deep wrinkles are gone. My hands and feet and neck have relaxed and are pain free. I can lift my toes now, I haven't been able to do that in a couple years. My hips and legs don't hurt anymore. Whatever I thought was sciatica is gone. I sleep better at night. I always have been a night owl, it was my most alert time. I did most of my internet contract work in the middle of the night. Now I go to bed at a decent hour and stay there all night. My sinuses have cleared too. The nasal membranes have shrunk. I've stopped snoring and grinding my teeth in my sleep. My skin is better. More elastic. And the pigmentation is changing- The age spots on my hands are fading. I like that a lot.
But best of all- I sent a copy of my hypothesis to that psychiatrist with a note attached: "Dear Dr. X- I believe this paper illustrates exactly how Hypersomnia is different than plain everyday laziness."
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