Stories of a Narcoleptic

A personal blog and stories about my life as a Narcoleptic.

[violet-the-twitching-nothing]

PSA: Narcolepsy is not a Mental Illness

It is a neurological disorder caused by autoimmune dysfunction.  It is not a psycho-somatic disorder. It is not caused by stress. It is not the same as being tired from depression. It is not the same as nodding off after a night of studying.  It is not made better with your happy-thought bullshit. It can not be accurately diagnosed by a psychiatrist. It is a complex neurological sleep disorder diagnosed with comprehensive studies to see how the brain goes into REM sleep.

[needlenightnemesis]

Narcolepsy is everything but a uncomplicated illness.

[catnipcrime]

Sleepy all the time? You might have a sleep disorder.

I know Rare Disease Day is for illnesses people don’t know much about, but sleep disorders can often be misunderstood even if the names are well-known.

I have a sleep disorder called narcolepsy, also known as “excessive uncontrollable daytime sleepiness.” And that’s basically what it is. You’re extremely sleepy during the day, and you can’t really control it by how much you sleep.

Important: YOU DO NOT HAVE TO FALL ASLEEP DURING ACTIVITIES TO HAVE NARCOLEPSY. One book actually said this rarely occurs in people with narcolepsy. You need to have a sleep study to be properly diagnosed, but here are some defining symptoms (these can go along with a lot of sleep disorders).

Main symptoms (everyone experiences narcolepsy differently, so not everyone has every one of these symptoms):

-excessive daytime sleepiness (again, you do not have to fall asleep during activities)

-cataplexy. this basically means you experience muscle weakness during strong emotions. you could be shocked, crying, laughing, etc. it can affect any or all muscles. some people may collapse (this mostly happens for me during shock or laughter). 

-nightmares, especially realistic ones.

-sleep paralysis. this occurs during asleep to awake/awake to sleep transitions. when someone gets sleep paralysis, they are unable to move for often a few seconds to a few minutes.

-hypnogogic hallucinations. these are described as dream-like experiences that occur when someone is awake. they often take place during awake to sleep/sleep to awake transitions and can go along with sleep paralysis.

(Keep in mind we all have different symptoms. Daytime sleepiness is the main symptom shared by narcoleptics.)

Other/correlating symptoms:

-depression.

-disassociation

-issues with alertness and concentration.

-dreaming instantly after falling asleep

I could be missing other symptoms, but those are some main ones. If you’re extremely sleepy during the day for no known reason, that isn’t supposed to be “normal,” and you might want to get a sleep study. It might help you rule out a number of sleep disorders. Plus, if you have diagnosis, you can get treatment, which might make life much easier. 

Narcolepsy is known as a neurological disorder. Basically, narcoleptic brains don’t know how to regulate sleep. This leads us to enter REM (rapid eye movement) sleep soon after we fall asleep when we’re supposed to enter it much later in the sleep cycle. For those who don’t know, the REM sleep period is when most dreaming occurs. The brain also seems to crave REM sleep, leaving us on the verge of REM throughout the day. 

[disabilityuserboxes]

This user has narcolepsy

[onerousdreamer-blog]

Introduction

Hello!

I’m 22 years old and you can simply call me Dreamer, which is kind of generic, but I want this to be a diary so let’s be weird, generic, and anonymous.

I’m just doing an introduction and just talking about myself a bit before it becomes story time.

I’ve lived all over the USA but was born in Germany. When I was younger, I never had the problems I did now.

Erm, I should explain, that I’m using this blog as a diary to talk about my Narcolepsy as it progresses. Because it does progress, from what I’ve been understanding.

It sounds terrible, I’m not ready.

Narcolepsy, despite what people think, is not just simply falling asleep. It’s not like you lean over and snore away.

Well kind of, you do, but not like it is in the movies. Also, before any “AHAHA I WISH I HAD IT” you don’t. No matter how much sleep I get, we get, I’m always tired. I can easily sleep up to 20 hours in one day and still wake up exhausted and irritable.

I’m on medication for it, provigil/modinafil, but it’s not really working at the dosage I got.

I’m rambling, let’s go back.

Narcolepsy is labeled as a chronic sleep disorder. I suppose it’s a neurological disorder but some doctors will label it as an autoimmune disorder.

Either way, it sucks.

According to Sleepfoundation.org “ Narcolepsy is a sleep disorder characterized by excessive sleepiness, sleep paralysis, hallucinations, and in some cases episodes of cataplexy (partial or total loss of muscle control, often triggered by a strong emotion such as laughter). “. 

I don’t have cataplexy, at least I don’t think. Sometimes when I laugh or get too excited, I do feel lightheaded and weak. My grip on stuff isn’t as tight and I do tend to drop things. I also feel like I’m going to fall.

But I don’t.

I also don’t want to have cataplexy. I’m afraid of my driver’s licenses being taken away. I was afraid in general when first being diagnosed with it. 

Let’s talk about the hallucinations though, because I do have that.

Not just visual, which I do have, but olfactory hallucinations as well. A weird burning smell, something I do smell time to time. For the longest time I was scared, I thought I had a tumor in my brain. Smelling a burning smell, having hallucinations that affect the smell senses, is NOT GOOD.

However, in a Narcolepsy Group I’m in on FB, a lot of people admitted to having the same thing so the panic and worry did lessen. I’m glad. I’m so glad for that group, except when I’m not, but in general I am.

I was diagnosed only this past May of 2017. Doesn’t seem long, but I’ve had this for so long that it seems like forever.

It’s such an underdiagnosed disease. Such a rare one. It gets overlooked a lot.

Especially since I’m chubby, doctors thought it was apnea and I needed to lose weight despite me having this problem for decades, even when I was thin.

At least they found out it wasn’t me being fat, but just me really having a problem. 

If I had to label my Narcolepsy as a severity, I believe I’m at a 4-5/10. I’m not terrible, it doesn’t affect my life much, I do need to stop and sleep and sometimes I’m late to things due to needing sleep. Sometimes I’m asleep in class, writing notes. 

Once I fell asleep while driving.

I cried, I was scared, but that’s a story for another day.

I am tired a lot, all day, every day. I like to sleep. It’s my hobby.

The best sleep I get is when I can curl beside my boyfriend of 5 years, he’s warm but the room is cold, and I can just snooze as he pets my head occasionally and does what he need to do. However, we only see each other once a year so we are LDR.

I guess my second best sleep is when I can curl up in my own bed with my cats snoozing beside me. My room is the optimal nap room for every feline in this house of mine. 

My dream in life is to become a large animal Veterinarian. I’m almost done with my degree and get to apply to vet school even. However, I’m scared. As this illness progress, would I be able to keep with it? Will I have to stop at 40 due to needing sleep too much? Will the cataplexy, that is so mild right now, become more severe to the point that if I get excited while doing a surgery I’ll fall?

Large animal vet is a dangerous career, having this disease is going to inhibit me... I won’t let it stop me though. Not yet.

I do have depression also, severe to the point of being inpatient but since I’m passively suicidal we’re not doing anything about that yet. I took that depression test and got a 94 out of 100 on it. 94 is definitely a need for inclinic care. I don’t want it though, I’m too busy to stop for a week or two to get the help I most likely need. I don’t have the time or money to just not do work and school. 

I feel like this post is carrying a bit, but you know a bit about me now. You can just follow me on this weird and rambling journey of me trying to discover myself and how to live with this.

I want a reminder that my narcolepsy at best is mild-moderate. Please don’t try to compare yourself to me if you have narcolepsy because our severity could be different. Our life is different. Also, to those who don’t have it, don’t compare others to me and vice versa. Everyone is affected by it differently. 

Anyway, I guess that’s it for this post. 

[newhologram]

Me: I have narcolepsy.

Dude I worked with that day: Oh! I have narcolepsy too! *obnoxiously pretends to pass out*

Me: *internally, looking at camera a la The Office*

No, really though, this is why we need better education and awareness about chronic/invisible illnesses and the fact that they are legitimate disabilities. This is why I do what I do.

I didn’t have the energy that day to try to make him aware of how, erm… not so sensitive it is to make fun of a serious, debilitating illness to someone’s face when they were just brave enough to tell you they have it (would you do that to someone with epilepsy, especially considering epilepsy and narcolepsy are kinda considered brain illness cousins? according to my docs and everything I’ve researched the past several years since my diagnosis).

But I was in a good mood still so I just laughed, lightly tapped his knee to get his attention, and said, “Oh, stop that. Actually, it’s a huge misconception and a bit of a stereotype, the idea that all narcoleptics just fall asleep randomly and that’s all the disorder is. It’s a legitimate neurological illness and unfortunately narcoleptics are at a higher risk for suicide because of how hard it is to live with. I mean, can you imagine if your brain lacked the tools necessary to get restorative, regenerative sleep, and it messed up the rest of your body and life as a result?”

I spent some time explaining to him the different kinds of narcolepsy and what my specific symptoms are, and how because of this lack of awareness I lived with the more intense symptoms undiagnosed from age 12-23 and he was blown away! He had no idea, because again thanks to lack of education and poor media representation, he just thought narcolepsy “is when you fall asleep randomly.”

I’m glad I was able to use that opportunity to teach another person. He was super supportive after and wowed by my story.

Support your narcoleptic buddies, yo!

[sheikzeldatetra]

Me as sleeping beauty

*sleeps for 100 years*

*Prince kisses me and I awaken*

Me: ….

Me: nope still tired g'night

[onerousdreamer-blog]

Welcome.

If you see this post, I’d like to simply just say hello.

In light of my newly diagnosed Narcolepsy, despite me having this problem for decades, I decided to start a blog to tell stories about my day as one. There’ll be older ones at first to play catch up, but I really just wanted to have somewhere to talk about these problems.

If you do wish to follow me just to read, I’m happy. If not, that’s fine as well I understand that.

I guess in general this is my personal diary? I just happen to have an audience.

Not quite sure how to end this first post. So, see-ya next time.