Unfiltered Story #272537

I’m the author of <a href=”https://notalwaysright.com/just-go-and-sleep-it-off/159809/“>this story</a>. Since leaving the doctor who wouldn’t listen to me in July, the following things have happened:

<b>1. I got referred to a neurologist by another doctor.</b>

This took some arm twisting of my new doctor, but I finally got it. Going in and describing my symptoms to my new doctor, I learned of a number of things I had that I failed to realize were symptoms: lapses in memory, failing to realize how and when I got somewhere/did something, my notes turning into scribbles without me realizing it, thinking I’d done something only to realize I hadn’t started it, getting sleepy after strong emotions, seeing spiders on my sheets while I’m trying to fall asleep, hyper-realistic dreams, waking up in the middle of the night, and being physically unable to drag myself out of bed in the morning. I had just dealt with them for so much of my life that I didn’t realize they weren’t normal.

<b>2. I took the at-home sleep study</b>

My neurologist immediately got me an at-home sleep test (insurance wouldn’t pay for a full one at first) after hearing my laundry list of problems, which came back negative for everything it tested. I also was awake until three in the morning trying to sleep with it. Thankfully, this allowed my neurologist the leverage she needed to order a full sleep study. This leads me to the next medical adventure.

<b>3. I got the in-lab sleep study scheduled.</b>

My neurologist ordered a traditional sleep study as well as a multiple sleep latency test (MSLT), which takes place the day following the overnight sleep study. The process was about as painful as getting scheduled for any other specialist, and it took two weeks to even schedule a slot, which was another four weeks out. I was told to wean myself off all my medications, as these can interfere with the results of the study, and be off of them entirely for at least two weeks before the study. I take an antidepressant, an anti-anxiety medication, and caffeine pills just so I can get through the day, so I know going in this is going to be tough. This is also where things get interesting.

<b>4. I spent two weeks completely off my medications.</b>

Even before I was completely weaned off my medicine, I knew it wasn’t going to end well. Without my caffeine pills, I fell asleep more often, and the day after Thanksgiving (one day before I had to be completely off my medicine), I fell asleep standing up with my one-year-old niece in my arms. Thankfully I didn’t fall over or drop her, but I don’t hold her the rest of her visit for fear of hurting her.

The first day back at work after the holiday, I informed my boss of my upcoming sleep study and lack of medication. He’s known about my sleep problems for almost a year at this point and is very understanding, and he suggested I take the day before the sleep study off so I don’t hurt myself or anyone else trying to work. I’m actually pretty embarrassed about this but accepted because I knew I needed it. Over the next two weeks I managed to fall asleep in the following situations:

-after someone told me a really funny joke
-when my two-year-old niece did a somersault for the first time and I was in the middle of telling her how proud I was of her
-while cooking on the stove with a cast iron skillet, which burned my hand because I was holding the handle
-stuck in traffic
-at my desk (repeatedly)

The worst situation, however, I had to be informed of what all happened after I woke up, because I had no memory of it. In my world, I was sitting with a coworker talking to them, and the next, I was across the building, on the ground, having my blood pressure taken by an EMT. My other coworkers told me I came in after talking with the first coworker, spoke with them for a little bit, then collapsed.

I was taken to the hospital for overnight observation, but aside from slightly elevated blood pressure (which I still hold was from being scared and not knowing what was going on), they couldn’t find anything wrong with me. Thankfully, my sleep study was two days later, so I was given the extra day off work and stayed with my parents.

<b>5. I finally got my sleep study</b>

The night of the sleep study, I went to the lab and was hooked up to all their machines, and as expected, I couldn’t fall asleep for about three or so hours, and l woke up twice. In the morning, I was told by the technician that the test didn’t show moderate or severe sleep apnea, so I was cleared to take the MSLT.

I was informed that the test would work as follows: five times over the day, I would be allowed to take five scheduled naps. Otherwise, I was required to stay awake, in a room by myself with basically just a bed and a TV. I was barely able to stay awake and started to drift off a few times, but the technician woke me up each time. When the naps came, I was given 20 minutes to fall asleep, and if I did, I was allowed to sleep for 15 minutes each time. Each time after I woke up, I was asked if I thought I fell asleep and/or dreamed. Three of the times, I stated that I fell asleep, and didn’t think I dreamed for any of them.

When the test was done, I drove back to my parents’ place, got cleaned up, and slept there for the night, as it was closer than my place.

<b>6. I got the results</b>

Two or three weeks after the test (and going back on all my medications), I had an appointment with my neurologist to go over the results of my sleep study. First, she diagnosed me with mild sleep apnea, which made it hard for me to drop into REM sleep. Despite this, I went into REM sleep almost immediately each time I fell asleep, even though I jerked out of it quickly due to the sleep apnea. The two times I thought I hadn’t fallen asleep and was just twiddling my thumbs the entire time? More hyper-realistic dreams.

She diagnosed me with narcolepsy, a condition where my brain is unable to regulate my REM cycle. Every time I’d lost time or done something without realizing it or not done something despite having memories of it, I’d been asleep and dreaming. The time I collapsed at work, I’d started dreaming before I fell asleep and effectively sleepwalked from my coworker’s office to where I collapsed before my body caught up. Without the caffeine pills, my symptoms had become more pronounced and I was unable to force myself to stay awake against what my brain was trying to do.

She immediately put me on a stimulant for the morning and sleeping pill for nighttime to try to regulate my REM cycle, and I’ve gotten ADA permission to take naps at work when I need to, as that can help improve alertness in people with narcolepsy. For the sleep apnea, I’ve been given a CPAP which I’m still getting used to. Overall, I’m still adjusting to my new normal, but a month into my diagnosis, I’m already feeling significantly better than I did before.