Narcolepsy

What Is Narcolepsy?
Narcolepsy is a chronic sleep disorder that is characterized by excessive daytime sleepiness and disrupted nighttime sleep. On the other hand, Narcolepsy can also include symptoms like sudden muscle weakness or cataplexy, sleep paralysis, and hallucinations. In addition, it is often caused by a person not getting enough of the brain chemical Hypocretin. Last but not least, it can be managed with a combination of medication and lifestyle adjustments like strategic napping and good sleep hygiene.

I'm not ok, right now.

My husband wants to help me by giving advice on time management, but he either doesn't recognize or accept that I simply don't have the same capabilities that he does.

My "manic" episodes allow me to accomplish almost as much as most people's "normal". My "depressive" episodes leave me a barely functioning shell. My physical health sucks nearly as much as my mental health, and when I finally have the mental and physical capacity to accomplish something, I'm so far behind on everything that "catching up" feels impossible, and I can barely keep up with the minimum that I should be doing daily, without the backlog.

I finally got on a stimulant that seemed to keep me awake, which started off my "high" this fall. I was doing great for a month or two, and then my oldest child started having health issues that were similar to ones I'd had for many years, but had been gaslit and dismissed by doctors to the point of giving up. You have to be relatively well-off to get decent medical care in the U.S., and I didn't have the money or emotional capacity to filter through all the jerks in the medical field to find a decent team. However, my child needed help, so I was going to fight for the both of us, for once. I've been trying to live more healthily, set up doctor appointments for myself and my teen. This has so far included a new PCP and 4+ different specialists for each of us (spread out over the next few months, due to finances) for our multi-faceted issues.

This has required a TON of research, especially finding the pediatric specialists, and already we've discovered one medical group that we won't be returning to. First off, the pediatric cardiologist told my child to stop taking their heart meds, based off 2 individual "normal" readings, without taking into consideration that they regularly have an elevated resting heart rate. Additionally, they not only charge our specialist copay but an additional coins., just because they practice inside a hospital building (Texas Children's). I'm not paying an additional 178% of my copay, just because it’s a convenient location for their providers! 😡

So, in addition to all my regular meds: (1)#Depression & #Fibromyalgia , (2) #Anxiety , (3) #PanicDisorder (which has been almost daily, lately), (4)#Narcolepsy , & (5) #Arrhythmia ; I now also have #DiabetesType2 , so either a new CGM every 2 weeks, or a gazillion test strips, pokey things, and alcohol swabs, a weekly injection (which leaves 14 day+ bruises every time), and MAN! We have incredible prescription insurance, but dang if these things don't STILL break the bank!! That's not even taking into consideration the regimen of quality probiotics, fiber, and OTC *ahem* "relief" medications needed to counteract the dominant side effect of the injection, in ADDITION to a high fiber diet and a FULL GALLON of water each day, or even the healthier grocery list, because you know eating healthy ain't cheap, either, unless you have the time and energy to do a ton of meal prep. My child hasn't even been prescribed any meds, yet, and I have no idea how we're going to afford it all!

Okay, obviously I also have #ADHD because that tangent was on only one aspect of why I'm struggling. 🤦‍♀️

Anyway, as we started trying to get a handle on our health issues, financial and mental health issues (#BorderlinePersonalityDisorder for me, and potential #DissociativeIdentityDisorder for my oldest child) made an appearance, as well as a general "cold/flu" illness.

To avoid truancy charges, we ended up pulling my child from school to homeschool for the remainder of the semester, increasing my responsibilities and stress level, as they are much more challenging to keep on task than their two younger brothers, whom I already homeschool.

Long story wrapped up: it's been a freaking rough semester, and my best plans have gotten derailed so many times and ways and I feel so incredibly defeated, right now. I just want to give up and go back to sleeping most of the day, like I did for the majority of the past 5 years, but I can't do that to my kids, or myself, again. I've already allowed myself to miss too much of their childhood, and I won't go back to that.

All About Sleep Disorders Based Off Of AI
A sleep disorder is a condition that disrupts the normal quality, timing, or amount of sleep, leading to problems with daily functioning and overall health. Common examples include insomnia (difficulty sleeping), obstructive sleep apnea (breathing interruptions during sleep), narcolepsy(excessive daytime sleepiness), restless legs syndrome (an urge to move the legs at night), and parasomnias (unwanted events during sleep, such as sleepwalking.) They can be diagnosed through sleep study and treated with medication, health habits, and psychotherapy. I have been through this process before and it really works.

Hi, my name is usdarejected. I'm here because I have Narcolepsy, Cataplexy, POTS, Mast Cell Activation Syndrome, and OCD. I struggle with food because of allergies, which means my diet is limited and that aggravates the POTS symptoms. Life is a journey and I am just looking for some people who may know how to better manage the ups and downs.

#MightyTogether

I don't like having narcolepsy because today I got really stressed trying to figure out my ride situation for the next week and now I can't sleep because I slept for a good hour or two afterwards and I can't really eat anything before noon because I always poop up a storm every morning.

Just slept for two hours the only problem is I missed my Catholics with physical disabilities meeting. Having narcolepsy is hard. That basically means my sleep wake cycles get messed up whenever I get stressed, have a medical issue, or get overheated.

Hi, my name is KingTiny. I'm here because my wife who I truly love suffers with borderline personality disorder, anxiety,schozoaffective disorder, PTSD and ADHD. And I recently was told I have narcolepsy.

#MightyTogether

Ugh I wish the sleep doctor would have kept my appointment because I keep falling asleep suddenly every time I get overheated, have a medical episode, or get stressed out. It’s been like this for at least 5 years. She said to me awhile back oh it sounds like you have narcolepsy because I also get really strong urges to eat food when I am sleepy. Maybe this just happened because my evening girl called out. I did my advocacy meeting and music stuff earlier though until I fell asleep. Now back to sleep