💤 Narcolepsy | Diagnosis Discussion ⚕🗣
29
September

By Adem Lewis / in , , , , , , , , , , , , , , , /


(calm music) – Hi, y’all, I’m Jaquie
from Chronically Jaquie and this is another video in
my Diagnosis Discussion series. In this video, I’m
going to further discuss my narcolepsy with cataplexy diagnosis but before I continue, please keep in mind that everybody’s journey with
chronic illness will vary and I’m gonna be sharing
my personal experiences which may differ from
yours or someone you know. Also, be sure to check out the description for the other videos in my
Diagnosis Discussion series and helpful links. So narcolepsy is a
neurological sleep disorder in which the brain
cannot properly regulate sleep-wake cycles resulting
in a fractured sleep cycle. This causes a slew of symptoms and the main symptoms of narcolepsy are excessive daytime
sleepiness, cataplexy, sleep paralysis, hallucinations
and automatic behaviors. Excessive daytime
sleepiness goes far beyond just being tired. It’s like a heavy blanket
that constantly weighs on you, a sleepiness that’s
nearly impossible to fight and sometimes even
results in sleep attacks which is where you fall asleep regardless of what you’re doing, sitting, having a
conversation, even walking. You suddenly become so sleepy, you can’t fight it no
matter how hard you try. Not every sleep attack is the same. They can vary in severity. For me personally, they
typically last a few minutes to a few hours and I could wake
up feeling better or worse. The same goes for napping. I don’t know how I’m
gonna feel when I wake up because it differs each time. Basically, it’s very unpredictable. There are actually two
different types of narcolepsy. Type 1 is with cataplexy and
Type 2 is without cataplexy and what is cataplexy? It’s a symptom of narcolepsy in which you have sudden but
temporary muscle paralyzation. You see, while you’re asleep, your brain releases a hormone
to keep your body still so you don’t act out your dreams. This is meant to happen but
in about 70% of narcoleptics, this mechanism goes off
inappropriately while awake resulting in cataplexy. Cataplexy can happen at random but it’s usually triggered
by strong emotions. My biggest triggers are laughter,
surprise and excitement. Cataplexy attacks can vary in severity from knees buckling to a jaw going slack to full body collapses. They generally last a few
seconds to a few minutes and rarely last a few hours or longer which would be something
called status cataplecticus. During a cataplexy attack, the person can hear and is fully coherent. They just cannot move
the affected body parts. So depending on severity,
it can be very unsettling to know what’s happening around you but not be able to move or communicate. Sleep paralysis is similar to cataplexy in which you’re awake and
lucid but you’re unable to move except it only occurs
when you’re falling asleep or waking up. It generally lasts a few
seconds to a few minutes and rarely much longer. Like cataplexy, sleep
paralysis will pass on its own and it has to do with that
same hormone mechanism. Sleep paralysis is actually
a very common thing that many people deal
with, not just narcoleptics and it can be scary but it’s not harmful. Hallucinations are a neurological
symptom of narcolepsy and they often occur
during sleep paralysis but they can happen during other periods of wakefulness as well. This is where dreams enter
states of wakefulness because narcoleptics
cannot properly regulate sleep-wake cycles. My narcoleptic hallucinations
are mainly auditory such as hearing knocking
on my bedroom door or incoherent conversations or music that aren’t really there. I did once see a horse in my bedroom and white birds on people’s shoulders. So they can definitely vary and they tend to act up for me personally as I become sleepier. Automatic behaviors
occur when a narcoleptic momentarily slips into a sleep state but continues on with what
they were originally doing just not very well. For example, if I enter
an automatic behavior while taking notes, the
writing will become scribbles or if I’m cleaning up the kitchen, I’ll start putting things
away in weird places such as mayonnaise in the microwave and automatic behaviors
generally only occur for me when I’m also very sleepy. I’ve struggled with narcolepsy
symptoms since middle school. Mainly excessive daytime sleepiness where I couldn’t stay awake during class and even during fun
activities with my friends. It wasn’t until high school
that I developed cataplexy when I hit puberty at
age 15 and at that point, my narcolepsy was untreated
and extremely severe. Right before my diagnosis, I was sleeping up to 18 hours a day. I couldn’t hold a coherent conversation. I couldn’t attend school regularly. I was having frequent sleep attacks while I was eating and walking
and doing other activities where a sleep attack could pose a danger. As far as cataplexy went, I was having more than 20
full body collapses a day sustaining injuries. I was having very frequent sleep paralysis and hallucinations and
automatic behaviors. I had absolutely no quality of life. I was diagnosed through
an overnight sleep study and an MSLT or multiple sleep latency test which is a daytime nap study. They are not invasive and not painful but it can be a little weird
to fall asleep in a new place with many leads stuck to your body and many electrodes glued to your head to measure sleep waves. My testing showed a fast sleep onset and other abnormalities
confirming narcolepsy and cataplexy is actually
a clinical diagnosis meaning there’s no specific test for it and it’s based on a doctor’s observations, a patient’s symptoms and ruling out all other possible causes. So between my overnight
sleep study, my MSLT and the clinical diagnosis, I was officially diagnosed
with narcolepsy with cataplexy at age 15 by a sleep specialist. Narcolepsy does affect
everyone differently and not every warrior will have
every symptom of narcolepsy and symptoms can definitely
vary in severity. So treatment plans are
tailored to the individual. Many narcoleptics do take
stimulants during the day to help them stay awake but
I personally can’t do that because it increases my tachycardia, making my dysautonomia worse. Instead, I take a medication at night that is specifically for narcolepsy to help regulate my fractured sleep cycle. It’s not a cure but I’ve
made noticeable improvements. My excessive daytime sleepiness,
much more manageable. My cataplexy is now considered mild where I’ll mainly have buckling knees or weak legs for a moment although I do sometimes have breakthrough larger scale cataplexy attacks and my sleep paralysis, hallucinations and automatic behavior are very minimal. So one of my most
disabling chronic illnesses became one of my most
manageable with proper treatment because currently, there
is no cure for narcolepsy. Things aren’t perfect but
I definitely found a way to keep moving forward. I hope this video on my
narcolepsy was helpful and thank you so much for joining in on my Diagnosis Discussion series. (calm music)


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