Thursday, August 16, 2012


"In narcolepsy, sleep episodes can occur at any time. People may unwillingly fall asleep while at work or at school, when having a conversation, playing a game, eating a meal, or, most dangerously, when driving an automobile or operating other types of machinery."

I don't have it this severe I don't think, maybe just a little? Or maybe I'm in denial. I sometimes have a strong want or urge to fall asleep because I'm tired, and it IS all hours of the day and night. I've only fallen asleep at school once and not MEANT to and I was pregnant. I've fallen asleep in class on PURPOSE though. I've never fallen asleep at work (the only jobs I've had (3) were all standing). I've fallen asleep on the phone but seriously, who hasn't stayed up all night talking to their boyfriend/girlfriend at least once in their life? I'm always sleepy. And usually I'm awake on the phone but not talkative. I've fallen asleep playing on the computer, again, who hasn't? I have insomnia, I play on my phone/tablet/computer until I'm tired so I can sleep. It's not like I'm sitting up clacking away at the keyboard and suddenly zzzzzzzzz... Never while driving (though passenger is a different story, that's snooze city). The eating thing, there's been times Big Daddy woke me up to eat and I've gone back to sleep when he left without moving but I don't consider that the same thing. I was asleep and still tired and wasn't woke up completely so I fell back asleep. Not the same in my opinion. So yes, I fall asleep doing several things and have for as long as I can remember but it's because I'm ALWAYS tired. What kid doesn't fight school wake ups, or upon those wake ups, fall asleep in the warm soft cocoon of a hot bath. Is that not normal? You're tired, you fall asleep? Also, frequently, if you wake me up, I can and WILL talk to you, but I will not remember it. At all. That's lasted for as far back as I can remember. There's a running rule here. If I don't remember, it didn't happen. Because I'm not conscious, at least not fully. I can't remember the conversation. When I was a child, mom would whip me or ground me (lots of parents do, it's just setting the story) however I guess it made her feel bad so at night, after I was asleep, she would wake me up, tell me she loved me and that she was sorry, and I'd go back to sleep. I would wake up still mad, not having ANY recollection of the conversation, at all. Big Daddy told the NP today that I have a blank expression when this happens. They think I'm partially awake and partially in REM. ALTHOUGH, Big Daddy never told me about this blank expression, he's always played it up like I was bright eyed, bushy tailed and fully in the conversation. Nice try, my words while like this still don't count in my mind since I can't remember.

"In addition to daytime sleepiness, other major symptoms include cataplexy (a sudden loss of voluntary muscle tone that may be triggered by strong emotions), vivid dream-like images or hallucinations during sleep onset or when waking, and brief episodes of total paralysis, also during sleep onset or when waking. The loss of muscle tone in cataplexy and sleep paralysis involves the simultaneous loss of both extensor reflexes (such as a knee tap and resulting leg jerk) and flexor reflexes (such as lifting the foot and/or leg following a foot prick or stepping on a sharp object). Normally, this kind of reflex loss exists only during REM sleep."

Overall, I have none of this. The day time sleepiness was covered in the first part. I do not have cataplexy and have never experienced it. The hypnagogic hallucinations/dream like images, no. I've had hyper awareness and visual/hearing disturbances brought on by extreme sleep deprivation by in general I don't have any of that. I've had very few sleep paralysis episodes (can count on 1 hand with left over digits). So on the whole, none of this in general.

"Contrary to common beliefs, people with narcolepsy do not spend a substantially greater proportion of their time asleep during a 24-hour period than do normal sleepers. In addition to daytime drowsiness and uncontrollable sleep episodes, most individuals also experience poor sleep quality that can involve frequent awakenings during nighttime sleep, and other sleep disorders. For these reasons, narcolepsy is considered to be a disorder involving the loss of control of the normal boundaries between the sleeping and waking states."

Well that makes complete sense, that part pretty much fits me to a T.

"For normal sleepers a typical sleep cycle is about 100 to 110 minutes long, beginning with NREM sleep and transitioning to REM sleep after 80 to 100 minutes. People with narcolepsy frequently enter REM sleep within a few minutes of falling asleep. In cases without cataplexy, the disorder may be caused by a lack of hypocretin or by various other causes."

I didnt include the part about narcolepsy with cataplexy since that's not me. Skipping to part 2 of that paragraph: Remember my post on the naps during my MSLT, how it APPEARED as if I took forever to fall asleep. Yeah, not so much. And how it felt like I didn't sleep during nap 1 but did the other 4, again, not so much. In fact, the COUNT was right, sleep was recorded in 4 of the 5 naps, but nap #2 was the one it didn't record sleep in. As for feeling like I layed there forever before falling asleep, nap 1 took 12 minutes, nap 3 took 5 (yea, FIVE) minutes, nap 4 took 5 (five) and nap 5 took 3 (three) minutes to fall asleep. And I experienced REM sleep in 2 of the 4 naps. That alone is abnormal, pairing that with my symptoms and another tidbit, I've been diagnosed with narcolepsy. That tidbit being, people who sleep all night and achieve REM sleep (I experience all 4 stages of sleep, 2 of those being DEEP sleep) should not NEED more than a cat nap, if anything, and should not be ABLE to experience day time REM (after sufficient night time REM/sleep). Especially not that quickly or that much.

"Narcolepsy affects both males and female equally and appears throughout the world. It most often starts in childhood or adolescence, and is lifelong."

Again, refer to the paragraph waaaay up there, about the sleep conversations as a child with my mom.

"What are the Symptoms?

People with narcolepsy experience various types of day and night time sleep problems that are associated with REM sleep disturbances that tend to begin subtly and may change dramatically over time. The most common major symptom, other than excessive daytime sleepiness (EDS ***author note: Anyone else read EDS as Ehlers-Danlos), is cataplexy, which occurs in about 70 percent of all people with narcolepsy. Sleep paralysis and hallucinations are somewhat less common. Only 10 to 25 percent of affected individuals, however, display all four of these major symptoms during the course of their illness."

Excessive daytime sleepiness (EDS) - YES
Cataplexy - No
Sleep paralysis - In general, no. Verrrrrrrrry rarely.
Hallucinations - No
Disrupted nocturnal sleep - YES
Obesity - I am over weight, I gained a lot in 2010-2011, mostly during pregnancy and have not lost any but roughly 20 pounds I lost after delivery.

You can read descriptions on the actual site, linked at the top.

"The MSLT is performed during the day to measure a person's tendency to fall asleep and to determine whether isolated elements of REM sleep intrude at inappropriate times during the waking hours. The sleep latency test measures the amount of time it takes for a person to fall asleep. As part of the test, an individual is asked to take four or five short naps usually scheduled 2 hours apart over the course of a day. Because sleep latency periods are normally 12 minutes or longer, a latency period of 8 minutes or less suggests narcolepsy. The MSLT also measures heart and respiratory rates, records nerve activity in muscles, and pinpoints the occurrence of abnormally timed REM episodes through EEG recordings. If a person enters REM sleep either at the beginning or within a few minutes of sleep onset during at least two of the scheduled naps, this is also considered a positive indication of narcolepsy."

Remember my sleep latency was 12, n/a, 5, 5 and 3. That's 3 under the "8" and one at 12. The heart and respiratory rates and nerve activity were normal, and like I said above, REM was seen in 2 of the naps. So my MSLT was "positive". That with my symptoms and history, well, there's my diagnosis.

As for treatments, they said had I been a regular patient, they would prescribe a stimulant to keep me awake during the day/give me energy but a stimulant would raise my heart rate. SO, I have to talk to my neuro AND my EP. Technically I could probably just talk to my EP since he's the one managing my issues AND does sleep studies so he'd be my main person to listen to but I'll still discuss it with my neuro and get her opinion since I already have an appointment with her 4 days before my EP and she's the one who ordered the test that "found" it.

No comments:

Post a Comment