About 2006, when I was in 6th-7th grade, I came down with mono. I don't remember when I first got it, because I was asleep almost all day, every day for a month, but I remember the months after I had to use a roller backpack because the doctors said my spleen was enlarged.
From that point forward I was always sleepy and nothing I did helped. I slept in class, though I was an A/B student, and just about any time I could sleep I did.
We always figured it was just the mononucleosis and that I, unlike most, could never shake it.
More recently, however, I got tested for Epstein Barr virus, because I wanted to know what the deal was, and if it was still active.
Turns out, I never had Epstein Barr, which is what causes mononucleosis.
So, I dug up my records from my old pediatrician and, sure enough, I wasn't ever diagnosed with Epstein Barr. They only did a monospot test and when it came back positive they just assumed I had it.
Even more, I looked through my online records for vaccinations, and in 2006 I got the Menactra/Menveo meningitis vaccine at school.
That was about the exact time I got sick.
I actually remember that day. All these partitions were set up in the middle school's small gym and everyone was getting several vaccines at a time, going from one partition to another.
Anyway, I read up online and found out Menactra/Menveo was sued for all the vaccine side effects, GB and Bels Palsy, you know. On top of that, some also claimed it gave them POTS and some even say narcolepsy. Since Pandemrix, an H1N1 vaccine, causes narcolepsy, I'm guessing it's a safe bet that the meningitis vaccines gave it to me.
Right now I'm on vyvanse, which is an extended release amphetamine to keep me awake.
For sleep, I'm on sodium oxybate. It costs $5,700 a month, and $2,400 would be coming out of my pocket if it weren't for the fact the pharmacy that runs a monopoly on the drug (it's the date rape drug GHB, btw) and they scam insurance companies by presenting people like me a magic waiver that means I only have to pay $35 while they tell the insurance company I paid the $2,400.
It works well, but there are some side effects. How it works is that it prevents my body from going into the REM cycle too fast and too often and lets me actually get Stage 2 deep sleep.
It's like this. Most people only fill up on gas when their tank is getting empty, right?
Well, my body is like if you were to fill up on gas EVERY TIME you pass a gas station. Imagine doing that, and you'll have some idea how often I randomly go into REM sleep. Keep in mind, with narcolepsy, you can go into REM even when you're awake, which means I occasionally feel like I'm dreaming when I'm awake.
If I don't take the vyvanse and the sodium oxybate cataplexy kicks in and when I get strong urges or feelings of nostalgia my knees buckle as my body very, very briefly turns on the switch in the brain that says "you're asleep, don't move, you'll fall out of bed."
People who sleep walk have the opposite problem of cataplexy, where that function to paralyze the body doesn't kick in and that's what causes them to act out their dreams.
Anyway, that's about it for my story. I'm trying to get of the sodium oxybate right now, namely because I don't think the pharmaceutical company is gonna make it and I need to find an alternative while I still can. I've been skipping some doses of the sodium oxybate so I have some in reserve on the off chance shit hits the fan, so I got about 2 months of supply if I reduce my dose to just barely working.
About 2006, when I was in 6th-7th grade, I came down with mono. I don't remember when I first got it, because I was asleep almost all day, every day for a month, but I remember the months after I had to use a roller backpack because the doctors said my spleen was enlarged.
From that point forward I was always sleepy and nothing I did helped. I slept in class, though I was an A/B student, and just about any time I could sleep I did.
We always figured it was just the mononucleosis and that I, unlike most, could never shake it.
More recently, however, I got tested for Epstein Barr virus, because I wanted to know what the deal was, and if it was still active.
Turns out, I never had Epstein Barr, which is what causes mononucleosis.
So, I dug up my records from my old pediatrician and, sure enough, I wasn't ever diagnosed with Epstein Barr. They only did a monospot test and when it came back positive they just assumed I had it.
Even more, I looked through my online records for vaccinations, and in 2006 I got the Menactra/Menveo meningitis vaccine at school.
That was about the exact time I got sick.
I actually remember that day. All these partitions were set up in the middle school's small gym and everyone was getting several vaccines at a time, going from one partition to another.
Anyway, I read up online and found out Menactra/Menveo was sued for all the vaccine side effects, GB and Bels Palsy, you know. On top of that, some also claimed it gave them POTS and some even say narcolepsy. Since Pandemrix, an H1N1 vaccine, causes narcolepsy, I'm guessing it's a safe bet that the meningitis vaccines gave it to me.
Right now I'm on vyvanse, which is an extended release amphetamine to keep me awake.
For sleep, I'm on sodium oxybate. It costs $5,700 a month, and $2,400 would be coming out of my pocket if it weren't for the fact the pharmacy that runs a monopoly on the drug (it's the date rape drug GHB, btw) and they scam insurance companies by presenting people like me a magic waiver that means I only have to pay $35 while they tell the insurance company I paid the $2,400.
It works well, but there are some side effects. How it works is that it prevents my body from going into the REM cycle too fast and too often and lets me actually get Stage 2 deep sleep.
It's like this. Most people only fill up on gas when their tank is getting empty, right?
Well, my body is like if you were to fill up on gas EVERY TIME you pass a gas station. Imagine doing that, and you'll have some idea how often I randomly go into REM sleep. Keep in mind, with narcolepsy, you can go into REM even when you're awake, which means I occasionally feel like I'm dreaming when I'm awake.
If I don't take the vyvanse and the sodium oxybate cataplexy kicks in and when I get strong urges or feelings of nostalgia my knees buckle as my body very, very briefly turns on the switch in the brain that says "you're asleep, don't move, you'll fall out of bed."
People who sleep walk have the opposite problem of cataplexy, where that function to paralyze the body doesn't kick in and that's what causes them to act out their dreams.
Anyway, that's about it for my story. I'm trying to get of the sodium oxybate right now, namely because I don't think the pharmaceutical company is gonna make it and I need to find an alternative while I still can. I've been skipping some doses of the sodium oxybate so I have some in reserve on the off chance shit hits the fan, so I got about 2 months of supply if I reduce my dose to just barely working.