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I'm sort of on the diagnosis path for Narcolepsy. -Severe-profound obstructive sleep apnea with a normal BMI. -CPAP has 'helped', but not that big of an improvement with daytime sleepiness at least. And yes, my pressure and everything is dialed in spot on to where my AHI every night is like 1-2. -My narcolepsy panel labs were positive for both genetic markers, but that doesn't necessarily mean anything. -I usually have very vivid dreams that basically feel like real life. It can get really scary as sometimes my memories from my dreams carry over to the real world and I end up thinking I had all of these conversations with people or that I did all of these things that never actually happened at least for the first hour or so after waking up. Like, imagine you dreamed of causing a car accident where you hosed up and were responsible for killing 8 little kids then waking up and walking around the house in a panic for 5 minutes until you slowly realize that 'that did not happen'. -No real cataplexy as far as I know, but I do have very occasional balance or clumsiness issues where like my left or right knee will randomly buckle, or an eye will start twitching or something. It's said that this is associated with Narcolepsy, but it doesn't feel any more out of the ordinary frequency-wise than anyone else having random muscle twitches or jerks or whatever. -I've had a couple instances of waking up and being 'frozen' where I couldn't move any of my arms or muscles, but this was mostly when I was younger and would happen at most maybe once a year. I haven't had one of those episodes happen for at least 5 years or so. -Not sure if it matters, but my father got kicked out of pilot school and sent on some assignment for fuckups in Vietnam after falling asleep landing a jet fighter at 180mph or so. Skidded off the runway, flipped the plane, and completely wrecked it. Only reason he didn't die was because it was a rainy day with a lot of soft mud on the side of the runway so when the plane flipped over, the canopy didn't shatter and crush him. He's always had sleep problems. -I've also had a few isolated minor head injuries over the years so that can't be ruled out either as a cause vs. Narcolepsy. -In terms of actual symptoms, I'd say it's fairly minor. I can power through most work or school days without sleep, but I'll take any chance to take a nap I can like during lunch breaks. I'm not passing out in class, or falling asleep at a desk, or anything like that. Just periodic waves of 'sleepiness' that come and go every 2-3 hours or so. Meds: Lots of Adderall. I used to be on Modafinil + Adderall for breakthrough sleepiness which was awesome and could keep me going for the whole day, but insurance changes and fuckery means that neither is covered anymore. $200/month out of pocket for Adderall every month and I can't afford Modafinil so I just don't take it. Really wish I could cut back on the Adderall as it does cause diastolic dysfunction and jacks my blood pressure up where as Modafinil/Armodanfinil + little doses of Adderall do not. I really NEED an MSLT done as it's the defacto-step in really confirming narcolepsy vs something else but it is hard as gently caress to get a referral to a neurologist here as no one takes my insurance or are not also sleep specialists. Recommendations have been made to try and get setup with one of the more world renown university sleep centers in the country, but I haven't really had time lately or the energy to do so or the willpower to fight with insurance. Too much poo poo going on with jobs, school, grad school apps, family stuff, etc. I've tried and tried to get prior auths approved for Modafinil, but insurance always rejects and kicks it back claiming the wrong diagnosis was submitted or "PA denied, TRY CPAP FIRST" even though I've been on a loving CPAP for 3 years (and the medical assistants faxed insurance my entire chart including the loving sleep study), or says poo poo like "The clinical literature standards WE abide by do not support a treatment of this diagnosis with Modafinil." and go on to cite american board of sleep medicine clinical guidelines from 2002. I wish I could get a lawyer involved, but again that's another uphill battle and a cost I can't afford. I really don't tell anyone about it as it's not a confirmed diagnosis and even if it was, no employer is going to understand. It's hard enough to get idiots in the general medical community to understand. Avalanche fucked around with this message at 16:38 on Jul 24, 2018 |
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Jul 24, 2018 16:35
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| # ¿ Apr 24, 2024 04:14 |
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