Narcolepsy part the first

So while I was away...I mean not really away but not here on the bloggosphere I trained for another marathon. I ran said marathon (horribly I might add) and then like a dumbarse I went off and thought I could run an ultra...so I did. A small ultra, a 50k, but never-the-less an ultra. While all this training and life was going on I was in the process of hitting what I think might have been rock bottom, not sure we will find out.

There were tons of things happening, Thing 1 started middle school, which changed my schedule more than I realized it would. Hunter dislocated his shoulder 3 times in 1 week and needed surgery which changed my schedule (he was always the morning person and I could squeeze in an extra 30 minutes to an hour of sleep) as I took over the morning routine stuff while still keeping the evening routine stuff. I stopped working to find the time to workout. I also got really really lazy about forcing myself to do my weekly training runs and might get one or two in plus the long run so that probably didn't help with that whole crappy marathon time thing. I stopped trying to make time with friends. I stopped being me. Why you ask (maybe you aren't asking but Imma tell you anyway)...fatigue. Overwhelming soul crushing, can barely breath fatigue. It wasn't new, it just got so I couldn't compensate any more. I think partially my change in schedule is what made it so bad or maybe I just reached my tipping point with it, but the past year of my life I think I just gave up. I didn't want to be around anyone, I was embarrassed about how I looked, how I felt, and the idea of putting on clothes and trying to pretend I wanted to have conversations when all I wanted to do was just sleep was just too much to handle. If we lost touch over the past year...its me not you and I'd like to tell you I'll be better but I'm not making any promises yet to anyone about anything. I've talked on here about going to the doc about this fatigue/weight gain thing. It isn't new. Sometime in the spring I had decided there was something wrong with me for real no matter what the last doc had told me (getting old, it happens no lie that's what he said) so this time I sucked it up and made an appointment with a real GP, which took SIX MONTHS to get into. When I went to the appointment, I cried telling this man all of my little weird symptoms. I admitted that they could be nothing, I could be crazy but more than anything I was JUST SO TIRED and I couldn't any more. I talked to this man about my poop, about my hypermobility but no genetic marker for EDS, about how sometimes I have insomnia and sometimes I could sleep for years, how I always wake up 3 or 4 times a night. I told him I had my DNA checked for rare diseases and nothing came up. I talked to him about my apple watch data on my heart rate, how my hands swell up to sausages when I run, and my arms go numb, and how they sometimes go numb when I'm just laying in the bed. That both Hunter and my mother have both noticed I have hand tremors. I told him about my PTSD, my family's history of osteoporosis, depression, ADHD, addiction, autism, muscular dystrophy, and any other thing I could thing of. But most of all I told him there was no way this was normal tired, there was no way people function all of the time feeling like this and I couldn't last much longer feeling this way or I would go nuts. He gave me a tissue (I wasn't kidding about the crying part, I'm lucky he didn't commit me). He ran a blood panel and gave me a referral for a neurologist and sent me on my way. The panel came back normal (not entirely my triglycerides were high for the first time in my life but oh well). My thyroid was fine my iron was fine, or at least within normal ranges even if not optimal. I fully expected that I have some hypochondriac note in my file. About a month after that visit I finally got a call from the neurologist. Took about a month to get in there. I actually fell asleep in the waiting room, I did the classic wake myself up when my held tilted forward. Again telling another doctor all the slightly weird but nothing testable symptoms also again explaining the big issue is I'M SO DAMN TIRED. Again crying, again ashamed and ready to give up because how is "I'm tired" a major medical problem and everyone is tired right? Except I really am that tired like don't want to live but I have people that need me tired. He starts asking a question or two...or twenty, checks my reflexes and recommends a sleep study, and MSLT, and an MRI. The MRI was to check for nerve damage in my spine because I have hyper-reactive reflexes. The sleep study was to rule out sleep apnea and restless leg syndrome, and the MLST was to rule out narcolepsy. He was ready to diagnose Idiopathic Hypersomnia basically acknowledging I really did have excessive daytime sleepiness without a cause but wanted to run the diagnostics. He didn't think it was sleep apnea because I lack most of the markers. I don't snore often, I'm not technically obese, and my airway is "a little far back but not alarming" whatever that means. He didn't think it was restless leg because...well because I don't have the uncontrollable urge to move my legs. He didn't think it was narcolepsy because I don't have cataplexy (sudden loss of muscle tone usually cause from sudden strong emotions) or at least I don't think I do. I walked out the door feeling grateful that I had just had two doctors in two months acknowledge that I wasn't "totally batshit crazy" which is my personal favorite way of describing my mental health issues and that even if I didn't have a diagnosis and had a low chance of a test giving me one, at least I was being taken seriously.

It took about another month (this month thing feels like a theme here) before the MRI. No nerve damage, found I had some arthritis and bulging disks but "nothing surgical" according to the neurologist, personally I think he was trying to avoid saying "normal as you age" to me after I told him how it felt to hear that before I turned 40 with the prior doctor. He's added an EMG (still waiting on the scheduling office for that one) to the list of tests as he's still looking in to the numbness and hyper reflexivity paired with the family connection to muscular dystrophy. I told Hunter I almost fell asleep in the MRI and the only thing that kept me from totally falling asleep was when the pattern changed, he said he definitely fell asleep in his. My sleep study was 3 weeks later, aka about a month. Word of advice, don't wear a hoodie footie because it will be impossible to pee when you wake up and it will also be really awkward when you you have to turn your back and unzip your hoodie footie to drop the leg leads down. There's no option to take a shower and if you have an MSLT the next day you'll be in those same hoodie footies allllllll day. I thought there would be some sort of sleep cap thing on my noggin. Nope. Just leads stuck to my face, to my head, to my chest, to my legs...I seriously wondered how the F I was supposed to fall asleep. I went in at 8 was in bed by 9, was asleep by my calculations at 9:15. Definitely woke up a few times at night but was able to go back to sleep, my internal alarm had been going off at 3 am and not letting me go back to sleep but this time I got to stay asleep until 5 am. With that much sleep I knew my first attempt at napping for the MSLT was going to be a joke.

If you don't know what an MSLT is (I sure didn't) you have to try to nap every 2 hours. They turn off the lights and will wake you up 15 minutes after you fall asleep. If you don't fall asleep in 20 minutes that nap trial ends and they try again in 2 hours. I don't think I slept the first one, I did on all the others. By my best guess I fell asleep with in 5 or 10 minutes. I dreamed for most of them. Did you know that dreaming during a power/short nap is a sign of sleep deprivation...cause I didn't. I got home at 4:30 that Monday. Wednesday at 12:30 my neurologist called. He said my sleep study was "normal, but probably not the best night of sleep". Jokes on him cause seriously that was probably the best night sleep I had in...weeks? months? Don't know a really long time. He next statement rocked my world. My MSLT showed that I hit REM sleep within 2 minutes of falling asleep during multiple trials. Under normal circumstances, we don't hit REM until we've been asleep for 90 minutes.

In the most matter-of-fact clinical voice ever my neurologist said "so. You have narcolepsy".

This post has truly gotten much longer than I planned so I'm going to end it here with the promise that I am going to write a part 2 tomorrow (or at least this week). But today is my first day on my medication...and I feel so not tired...so very much alert and okay without jitters or anything negative that I could sob with relief.