Narcolepsy?

[pearjas]

Hi everyone. I am not familiar with Narcolepsy or sleep disorders in general but my sleep has always been different.  Typically, I fight daytime sleepiness with caffeine.  In prior years, the caffeine has been a lot but I’ve lowered it significantly.  I guess I am not sure what all I need to say… I work 8-5, and by 5:00 I’m exhausted and go home and sleep anywhere from 2-5 hours typically, waking up at night (usually) and staying up until anywhere from 2-4 am before getting another few hours of sleep.  I’ve found this cycle works the best as far as getting me through the day and getting the most done.  

Generally one day a week, I will just come home and crash and sleep (of course not non-stop, but I’ll stay in bed) until the following morning when I have to get up for work.  These are the nights I typically have the most dramatic dreams and can generally recall several.  I often start dreaming before I even completely fall asleep as I’ve found I often can tell a story about what I was dreaming about when being disturbed in light sleep.  

In early August I developed an eyelid twitch that has not gone away.  I’ve seen two eye doctors and my doctor twice.  This week, I lowered my caffeine to nearly nothing for five straight days and experienced even more interesting symptoms.  My dreams became even more widespread and tiring (very vivid, intense) and I woke up and even acted out a couple of times while still sleeping this week.  I’ve felt okay during the day, and of course been hit with intense drowsiness suddenly as well, which seemed to be worse with less caffeine.  

The main reason I’m writing is because the symptom that’s gotten the most worse this week is a loss of sensation in my legs while walking.  This happens very briefly – like for a split second, and it only happens while I’m walking.  I will be talking, and suddenly it feels like I have no legs or perhaps a “jello-like feeling.  Just as my legs would buckle, lock, or I’d fall, I gain feeling again.  It’s literally a split second loss of sensation/feeling.  It seems like it starts around the knee.  Could this be possibly related to narcolepsy, or is this maybe something else I’m dealing with?  

Obviously, I’m worried about a brain tumor because of the twitch combined with this problem.  I haven’t had an MRI or anything to verify yet, but obviously a brain tumor isn’t the most common problem that would cause something like this.  I guess you could call it a 'loss of balance'.  I’m 31, male, about 145 pounds, active… No other major health problems.  Does anyone have any input?  :  (

[2017mary]

This sounds exactly like narcolepsy to me.  A sleep study should be able to to diagnose it.  Talk to a neurologist.  Narcoleptics take stimulants to treat the disorder.  The caffeine you were taking was probably alleviating things somewhat.  

I know a guy who has narcolepsy.  He wasn't diagnosed until he was in his 40s.  His wife thought he was lazy.  Your symptoms sound just like his.

[AIMandroman]

Narcolepsy must have catoplexy in order to qualify as narcolepsy.  Sleep studies are worthless.  Doctors are worthless, clueless idiots that think spending enough money to put their children through medical school is the answer to every patient's problem, so you should just go get better insurance so they can keep charging more and more.  

[2017mary]

The essential features of sleepiness in narcolepsy is irresistible attacks of refreshing sleep that occur almost daily (at least 3x per week) over at least 3 months. Narcolepsy generally produces cataplexy, which most commonly presents as brief episodes (seconds to minutes) of sudden, bilateral loss of muscle tone precipitated by emotions, typically laughing and joking. Muscles affected may include those of the neck, jaw, arms, legs, or whole body, resulting in head bobbing, jaw dropping, or complete falls. Individuals are awake and aware during cataplexy.

From https://************.com/disorders/narcolepsy-symptoms/

[2017mary]

The *** is ************

[2017mary]

Wow, it's blocking that....  Psych central.

[rochesternydrowsy1]

Cataplexy is not required to be diagnosed with narcolepsy as there are Two types of narcolepsy:
Type 1:  narcolepsy with cataplexy
Type2: narcolepsy without cataplexy

[AIMandroman]

I just slept 15 hours with a CPAP and still feel like ****.  I cannot function.  The day before, I probably only worked a total of 3 or 4 hours, so it's not like I should be exhausted.  I hate this life.  I won't be living it long if someone doesn't help me.  

[pearjas]

I would not be too hard on yourself concerning the CPAP. They put me on that earlier this year, and I could not handle it either..  

[RandomBanana]

"I guess I am not sure what all I need to say… I work 8-5, and by 5:00 I’m exhausted and go home and sleep anywhere from 2-5 hours typically, waking up at night (usually) and staying up until anywhere from 2-4 am before getting another few hours of sleep.  I’ve found this cycle works the best as far as getting me through the day and getting the most done."

Pearjas, do a search for "circadian rhythm disorder" or "circadian rhythm sleep disorder" and see if anything resonates with you once you've read a bit on them.