#mslt

Can't tell if doing well. Hate this lots.

I hurt much. Cannot lay down.

I've been waiting for this test for a long long time. I'm only nervous because like... what if they tell me I'm not narcoleptic? That it's all in my head?

But I don't know what else it would be. I struggle with all the symptoms, even cataplexy.

I made this yesterday but I didn't have enough energy to come on here after all that yesterday.

I was the machine basically. They put glue and then tape over the glue to hold the pegs on the face. Then they glue tf out of the back of my head in my hair ALL over (like 9 different spots) an EKG type monitor on both side of my chest, one on the stomach, and a pulse oximeter on my finger. I had to sleep there while being observed. Then at 5:00 in the morning I was "woken up" for the day by someone with an uber b!tch attitude (like she was the one that just got woke up or something lmao) and then every 2 hours after this point I had to stay up the entire of 2 hours sitting there, doing nothing (the internet wasn't connected so I literally had no TV and I'm going to chair for distances because I fall too much now.. so I couldn't even walk around. I sat there, listened to music, and held idle conversation with my mom on and off, all while being recorded like the good guinea pig that I am. When the two hour, "rest period" is up I'm supposed to go to sleep for 15 to 20 minutes. The first one took me 20 mins to fall asleep, the second took 15, 3rd took 5 mins, 4th took 1 min, and rhe last was instant.

In the mslt they're looking for a few things but basically they're going to get the mean time of when I fall asleep at nap time and if it adds up to a certain number they can determine if I have narcolepsy or something else.. This is one of many fire hoops that I've had to jump through to try to figure out what's wrong with me medically and it just seems like a never-ending guinea pig process. By this point, I don't want to be a Debbie Downer but I'm pretty sure I'm not ever getting help. So, we'll see.. I have a drug test coming up on Monday because apparently it's mandatory at this sleep center after an mslt. After that test, we see the idiot sleep doctor himself who said to me, "everyone's going to call you a faker". Which is pretty interesting considering I have medical proof up the wazoo.. I think it's really funny he stopped one word from saying that he was saying it because he knew I'd sue his ass. So he wrote it down in my file that, "other people will say she's faking" to the point my primary doctor brought it up to my attention without using his name.. and he's the only doctor that said anything stupid like that since my heart's gotten chemically stopped twice and I've been on beta blockers.

(Beta blockers are very serious medication and if you take it without having a heart problem you will 100% gain a heart problem if not reach your mortality.)

So long story short: no machine to get into but lots of things to put on.. then sit and wait. One of the most annoying tests ever. Washing my hair when I got home was nearly impossible.. the first time I had to do this type of test I had to wash my hair 10x with shampoo and conditioner and it still wasn't fully clean I just had to give my hair a break.. I had to have help washing my hair this time again and it still took 6 different washes and I kid you not, it's took like a quarter of the bottle of conditioner and like 20 mins of just letting it set and wash AGAIN.

I'm just happy to be back home 🏡

I dropped under my "unattainable goal weight" today. I guess it's time to move the goal posts? 5 lbs until I hit the weight I'd personally find concerning, which is still 10, maybe 15 over what could be considered healthy and reasonable for my height and frame. Guess I need to work harder at adding calories and eating regular meals.

What's my secret to unintentional weight loss? Stress and drugs. 😅 By drugs, I do mean ADHD meds taken as prescribed under the care of a licensed psychiatrist. I did schedule a follow up with my primary next month. I'm curious to see her reaction.

Could I stop taking the meds? Literally yes. But. They've helped immensely with my hypersomnia and my chances of staying awake a whole day without them is extremely unlikely.

I'm also going to talk to my doctor about getting another sleep study (MSLT), since by symptoms I have narcolepsy without cataplexy (NT2). When I had one in 2010 I was"overqualified" for narcolepsy by sleep latency (my average 6.6 minutes, narcolepsy is 8 or less, normal is over 10) but my SOREMP score (hitting REM within 15 minutes) was only 1 of 5, and 2 of 4 or 5 would have gotten me that diagnosis.

I found a study yesterday that showed that the MSLT (needed for insurance to give a shit and pay for meds) results for NT2 was incorrectly attributed to hypersomnia 26-57% of the time. Frustrating, but it does give me hope that I could have a different score with a second test.

I just want to be awake for a normal human amount of time each day, ideally without needing drugs. 😔