WHAT IS NARCOLEPSY & WHY AM I WRITING ABOUT IT... ⋆ spaceycowboy.com

WHAT IS NARCOLEPSY & WHY AM I WRITING ABOUT IT…

HEYHEYHEY!

I hope quarantine hasn’t made everyone go crazy yet! I decided to write a little bit about my experience with narcolepsy. I got the idea as I started writing a bit about my day to day life / routine with Ripley and thought I should start out with a post on narcolepsy so my day makes more sense! hahah … enjoy!!!


WHAT IS NARCOLEPSY?

“A chronic sleep disorder that causes overwhelming daytime drowsiness.”

“The cause of narcolepsy isn’t well understood but may involve genetic factors and abnormal signaling in the brain.

If the brain loses hypocretin, histamine and other naturally occurring chemicals in the brain don’t work well enough, and states of wakefulness and sleep can happen at the wrong time. With low or no hypocretin, the separate states of wakefulness and sleep do not work properly, shifting often from one state to another at the wrong time.

Excessive daytime sleepiness (EDS) can be a daily obstacle. It can affect routine activities such as exercising or cooking. Some may suppress their feelings or skip activities to prevent an attack and avoid embarrassment.

Narcolepsy is a real neurologic condition and an invisible illness that severely impacts the individual diagnosed along with family and friends. — Sharon, 43 years old, living with narcolepsy”

H E R E is the link to the website I got the specific info from!


HOW I FOUND OUT

✰ To be fair, I have to give credit to halle for this one. We were talking in her car one night and I can’t fully remember what triggered this conversation but I was talking about how tired I always was, how hard it had been for me to sleep, how bad my headaches were getting, my sleep paralysis was getting worse, I had missed my 5am shift at work too many times in a row to the point I thought I should just quit … I was not my best self to say the least. On top of all that, I had been known to randomly lash out & get sudden surges of emotions {usually anger}, but have no idea why I acted that way when the emotions I was truly feeling were not near as severe as my outburst made it seem. So I guess Halle put all of that together and mentioned her cousin who had been diagnosed with Narcolepsy saying that I had symptoms that were similar, a few that she recognized from her cousin. I started internally throwing myself a party because I finally found a bit of hope into solving some of my health problems, and being able to fix my sleep would be a HUGE victory for me. I must admit, it was hard for me to believe or think I had any problem of the sort until Halle said something because for the majority of my life I was never one to need a full night of deep sleep, I would sleep 5-6 hours and feel rested enough to conquer the day ahead.

✰ I’m not going to bore you with all of the sleep study details, but since I approached the doctors with an idea in mind that it could be narcolepsy, it was easier for them to inch towards that diagnoses. I think that was because I knew just a little bit of information about it, whereas most people don’t really know what it is since it’s so underdiagnosed. Obviously I didn’t persuade them or try to doctor the doctor, but after a few doctors listened to my story, heard what I had to say, and the information I knew about all the possibilities they decided just to start me out with a in-lab overnight sleep study; aka POLYSOMNOGRAM, which is typical of anyone complaining of constant sleep disruptions. What is not usual is the day portion of testing they do to determine if someone has narcolepsy; the {MSLT} // MULTIPLE SLEEP LATENCY TEST. The MSLT occurs the day after the overnight testing, and consists of 5, 20 minute naps, taken each at the start of the hour, 2 hours apart from each nap.


MY SYMPTOMS // EXPERIENCE

In full honesty, until I started talking to Halle about the issues I had been having, I would have never in a million years gone to the doctor in hopes to discover narcolepsy, or any sleeping disorder for that matter. I just thought there was something I was doing wrong during the day, or in preparing for bed, that was causing my problems. At the time I was living in a sleeping porch {4 of us in one room}, so I was thinking that maybe I was just mentally having a hard time adjusting to sleeping in such a fashion and that was causing my constant tiredness. Well apparently not….hahahha. I also had sleep problems in the past, but they would come and go. I had taken some medication, that never worked, but the narcolepsy symptoms were much different from the prior problems I had!

✰ I mentioned earlier that I would have sudden emotional outbursts, which many times were really panic attacks, { but really i’m just dumb and didn’t realize that those were panic attack I was having until I got diagnosed with narcolepsy}. Other times, however, were just me becoming so angry and then thinking to myself, “wtf did I do that for why am I angry at all?” That was my least favorite character trait by far, I always felt so terrible, and then would get over the situation about a second later while everyone else was still upset … that often left everyone very confused. Thankfully that does not happen anymore!

Hallucinations & Sleep Paralysis — these two symptoms were some I had in the years prior as well, mostly from the sleep complications that developed from my concussions, but they were N E V E R as bad or frequent as they started becoming in 2016/2017. It got to the point where I would have sleep paralysis every morning… it was terrible and it would cause me to be pressed for time almost daily. Now, both still occur, but definitely not as frequent and not as severe either.

✰ Something else I started to notice was my short term memory was practically nonexistent. It was so weird, I would sit there basically zoned out and crossed eyed trying to listen in a conversation or in class… literally miserable. I felt so bad because I thought it was super obvious when it would happen but it wasn’t intentional. Often I would zone out or nod off in class sort of like you do when in you’re in the car and sleeping but kind of awake enough to hear noise in the background. It was bad… 

✰ I also started to avoid going to / doing everything. I just knew in my mind I would not have a good time going out or committing to something if it was after about 7pm; or if it was long, I had to stand, I had to be active … I literally became lazy and boring. This aspect was especially bothering me because I felt I had no excuse for avoiding being social but I physically could hardly keep myself vertical most days.


NOW

Sadly still have not fully figured out what works best for me. I feel beyond accomplished on days where I don’t give in and take a nap when Ripley does … hahaha sounds so sad but it’s true. The worst part about it is that I am home, bored, and have m a j o r seasonal depression, so this past winter I gave into naps…a lot. Which ended up completely screwing me over because now my sleep schedule is beyond fucked up and it’s been impossible to fix. In January there was a series of two weeks where about every other night I wouldn’t be able to sleep at all, naturally causing me to crash hard during the next day. It was a nightmare. Now that the weather has gotten warmer, I switched up my medications a bit, and I found “The Power of When” things have s l o w w l l y y gotten a bit better. Definitely still a work in progress.

✰ One thing that has significantly improved is the understanding my family and friends have started to obtain in regards to how narcolepsy works. To be completely honest it used to {still sometimes does} bother me so much whenever people would complain about being tired but then not try to empathize or understand what I had to go through just to brush my teeth in the morning. Thankfully, everyone has started to get it and care more to know the truths about it, so that makes me really happy.

✰ Sooo in sum, my life still kind of is a struggle, especially when I have to add Ripley into the mix. I am constantly late {I apologize in advance to everyone}, i’m even more of a scatter brain than I was before, I start doing a task then tire out in the middle creating disaster {usually when i’m doing laundry…haha oops}, plus a ton of other little things that will make anyone crazy … especially myself. It has been hard trying not to get mad at myself for being like this knowing that I used to function fine, but I didn’t have these symptoms four years ago… so this is the new normal and it will all work out soon!!! Just happy to have people in my life that understand, make fun of me for it, but deal with me anyways (:

I’m going to post another one on the details of my day with lil ole rip and my new ∼ d o l p h i n ∼ schedule I have been trying to follow the past few days!!!!

→→→→→→→SOME MORE NARCOLEPSY FACTS FOR YA→→→→→→→

“Narcolepsy is a lifelong sleep disorder that makes you feel overwhelmingly tired, and in severe cases, have sudden uncontrollable sleep attacks. Narcolepsy can impact nearly every aspect of your life. It is dangerous because you can have excessive sleepiness or a sleep attack at any time of the day, in the middle of any activity including eating, walking or driving. Operating a vehicle with untreated narcolepsy can be very dangerous and some states even have laws against it.

Many people with narcolepsy do not know they have the sleep disorder. About one in 2,000 people have some form of narcolepsy. Narcolepsy may run in some families, but most cases are not genetic. The disorder is extremely rare in children. The cause of narcolepsy is still unknown, but recent research suggests that many people with narcolepsy with cataplexy have low levels of the neurotransmitter hypocretin, a chemical that regulates arousal, wakefulness and appetite.

When you add up the hours of total sleep time, people with narcolepsy don’t necessarily sleep any more than people who don’t have the sleep disorder. This is especially true when you consider that many people with narcolepsy often have difficulty sleeping through the night because of unwanted awakenings.

Some people assume that because they are consistently tired during the day, that they may have narcolepsy. Other sleep disorders that cause daytime sleepiness are often mistaken for narcolepsy. These include sleep apnea, circadian rhythm sleep disorders and restless legs syndrome. Medical conditions, mental health disorders and use of certain medications or substances can also cause symptoms similar to narcolepsy.

Symptoms of narcolepsy usually begin between the ages of 15 to 25, but it is possible start experiencing symptoms at a much younger or older age. The symptoms usually worsen after the first few years.”

⇒ H E R E is the link to the information above!

This post kind of feels like a lecture or something, but I thought I would write it because 1. I don’t think many people know this about me and 2. Not many people know the truth about Narcolepsy at all, that is why it is so heavily misdiagnosed! As always, feel free to ask me any questions about this or anything else!

☄︎ Blasting off,

T ∾ SPACEYCOWBOY ✰✰

✐ H E R E is my previous post about my current recommended book list! It includes “The Power of When” — I seriously cannot recommend this book enough.

✐ I also wrote a post about my experience with burn out {which had a lot to due with my narcolepsy} & you can check that out H E R E!

LIFE, WELLNESS

WHAT IS NARCOLEPSY & WHY AM I WRITING ABOUT IT…

AUTHOR

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