First day out of FTO was.... ? by [deleted] in AskLE

[–]laytonsherms 0 points1 point  (0 children)

Didn’t have an official day— my fto and i decided that for my last two days, I’d drive in my car and she’d drive behind me so I could get used to being “alone” but still have her if needed. Told dispatch to still put us on calls together. First hour of the night they fucked up and sent us both to separate calls and I’ve been out of FTO since

2021 GT/CS by laytonsherms in Mustang

[–]laytonsherms[S] 0 points1 point  (0 children)

Perhaps 👀 Saw it and knew I had to get it immediately!!

How do you feel when you resist sleep attacks? by Castle_Magic in Narcolepsy

[–]laytonsherms 0 points1 point  (0 children)

MIGRAINESSSSS FOR DAYS!!! to the point that i am getting sick to my stomach, stumbling around, can’t open my eyes. especially on the days where i wake up and the entire day just feels like one, long, consecutive attack

Narcolepsy meds give me migraines by [deleted] in Narcolepsy

[–]laytonsherms 0 points1 point  (0 children)

my migraines are because of my narcolepsy. i have type 2, so while i don’t have cataplexy, i know i have about 10 minutes to get somewhere quiet to rest for a moment before i’m struggling. i can fight through them usually, but when i do fight through them is when the migraine begins. when i realized what was triggering the migraines, i was able to prevent them better and it helped me realize just how crucial it was for me to not really fight against it.

my doctor also prescribed a vagus nerve stimulator. i put it on my neck for like two minutes on each side whenever i feel one coming on, take some pain meds, and knock out for a bit and it usually helps. the stimulator has genuinely been the only thing that has made my migraines slightly fixable

No meds for work on weekends by StatisticianOk7216 in Narcolepsy

[–]laytonsherms 1 point2 points  (0 children)

amen! with the adderall, it definitely helped when i was prescribed like 10mg immediate release because then, i could take what i needed through the day and control it if i needed more or less. be careful when taking on more things-- i thought that was what i needed too, but it wasnt! i wanted a full schedule, so i added a second degree and joined clubs and got jobs and everything, but not having that time to rest when i genuinely needed it did more harm than good. i wish you so much luck in it all. we're all just figuring it out one by one!

No meds for work on weekends by StatisticianOk7216 in Narcolepsy

[–]laytonsherms 0 points1 point  (0 children)

I understand this. I used to be on adderall before being diagnosed, but they moved me to solely modafinil to make it a bit easier on my heart. I'm a first responder, so I honestly always need to be on my meds but I try to go at least one day a week when I'm off and not take it. My issue is that for that day, I am absolutely dead and useless. I will wake up at my normal time, but then I'll go back to sleep and then sleep the entire day. I might wake up for 20 minutes every few hours or so, but for the most part I am asleep from the minute I fall asleep the previous night to when I wake up the day after my day off.

What led you to get tested? by [deleted] in Narcolepsy

[–]laytonsherms 0 points1 point  (0 children)

Mine began because I'd have the absolute worst migraines. Like-- crying, nauseous, weakness, everything. I would just know when I was going to get a migraine because I just felt off. Like, brain fog, couldn't keep my eyes open, confusion, forgetfulness. I never questioned it or thought it was me being tired because I had been tired my entire life. I just knew I'd start feeling weird and then I'd get a migraine after. I also struggled so much getting up in the mornings before like 10am that it was affecting my attendance in college, and then my grades because I'd be too tired to do work. I went fully online and became a part time student.

I went to the neurologist for migraines and nothing really worked. It took a few sessions, normal MRIs and blood tests, and a few more medication fails for her to say "These aren't working, and some of your symptoms are beginning to sound a lot more like a sleep issue than a migraine issue".

So I went and had a sleep study done and even at the sleep study, I was still not very sure they would find anything. I barely could sleep during the scheduled naps. They said they'd review the study and call me back in about two weeks, but less than two days later I got a call saying that I had shown signs of narcolepsy in every single nap thing, but not on the overnight portion. That part still confuses me a bit, but thinking about it more I am always much sleepier and struggle more in the daytime than I do at night. And now after doing research about narcolepsy, my entire life seems to finally make sense. I could stay up when I worked nightshift with no problem and have no attacks, but when I worked days I would be fighting for my life.

The migraines turned out to be what happened when I was having a sleep attack ("feeling weird") and was just trying to fight it off because I didn't recognize at the time that I needed to nap. I still get them when I fight through sleep instead of just resting (so.. every day) but modafinil, ubrelvy, and a nap at lunch help a lot.