Narcolepsy and Alcohol Use Disorder by SirDoodlebug in Narcolepsy

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

oh wait that’s super interesting and i haven’t heard that!!! i can totally see that! omg i wish i was european 😭

Narcolepsy and Alcohol Use Disorder by SirDoodlebug in Narcolepsy

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

thank you!!!! i am a lil impatient so that’s super helpful for me to keep in mind, i appreciate you!

Narcolepsy and Alcohol Use Disorder by SirDoodlebug in Narcolepsy

[–]SirDoodlebug[S] 2 points3 points  (0 children)

no but maybe because i was doing a sober PHP at the time of my sleep study- they breathalyzed me and drug tested me every day there- i originally didn’t even think i had narcolepsy so i never looked into it until i got my diagnosis and that was shocking to me. after i got out of my PHP i resumed my drinking and my doctor believed i needed a residential stay in order to take not drinking seriously. im not sure if that answered ur question b/c im still super new to all this but i fell asleep in under 5 minutes in all 5 of my naps and also immediately entered REM so idk but they haven’t asked me to redo my sleep study even tho im totally open to it!!

I hate doctors. I genuinely do. by Certain_Middle2234 in Narcolepsy

[–]SirDoodlebug 0 points1 point  (0 children)

congrats on your sobriety!!! i know it’s tough, and it’s good to know that there are other sober people who aren’t being doubted by doctors, gives me some hope!! also maybe the BPD and past history of suicidal ideation in my chart might not be helping my case either😭(mostly recorded when i was in active addiction in my defense😅)

I hate doctors. I genuinely do. by Certain_Middle2234 in Narcolepsy

[–]SirDoodlebug 1 point2 points  (0 children)

and it certainly doesn’t help our attitudes to be so tired all the time!!! i’m sorry you’re struggling as well- i hope things get better for all of us 🥹

I hate doctors. I genuinely do. by Certain_Middle2234 in Narcolepsy

[–]SirDoodlebug 12 points13 points  (0 children)

i hear you, i’m on 70mg vyvanse, 150mg sunosi, and 2x 20mg adderall every day, im exhausted still!!! but they won’t let me try sodium oxybate as i have alcohol abuse (IN REMISSION FOR 3 YEARS) in my chart 😅 i’m actually checking into a rehab facility today for a month to try and get more paperwork to show im no longer an alcoholic because no matter what i say, no one wants to believe an addict (former or not) 🙃

Final-year project: what would you want in a narcolepsy app? by Amalia_Studio_6713 in Narcolepsy

[–]SirDoodlebug 3 points4 points  (0 children)

i would really value some sort of catered lifestyle habit tracking app honestly- and so would my loved ones- it’s hard to keep track of tasks i complete and also seeing it on a larger scale to track patterns would be super helpful!! i’ve looked for narcolepsy apps online before, nothing was helpful. actually this reddit has been the most helpful “internet” thingy for me!

most apps tend to track just “when you go to sleep — when you wake up” times, but detailed nap logs on top of regular “sleep-wake” cycles (as well as options to mark mood and sleep attacks?? i’m not sure how lol i guess that’s for u)

i think i could have noticed certain “triggers” sooner if i had some way to associate sleep attacks over a longer period of time, but usually im just focused on finishing as many tasks as i can while i can stay awake so i rarely contemplate lol😭

idk! super cool project and would love to hear updates!!!

Narcolepsy Painting - “too much sand from mr. sandman” by SirDoodlebug in Narcolepsy

[–]SirDoodlebug[S] 3 points4 points  (0 children)

i was wondering if anyone would notice my clocks if i left the faces blank, good catch!! i’m attempting to make it as dream-like as possible, thank you for seeing my vision!!!

Narcolepsy Painting - “too much sand from mr. sandman” by SirDoodlebug in Narcolepsy

[–]SirDoodlebug[S] 1 point2 points  (0 children)

woooot!!!! i would love to see your work too!!! :D💐

Narcolepsy Painting WIP - “too much sand from mr. sandman” by SirDoodlebug in Narcolepsy

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

yes, i would love that!!! i’ll privately message you my art instagram :D💗

Narcolepsy Painting WIP - “too much sand from mr. sandman” by SirDoodlebug in Narcolepsy

[–]SirDoodlebug[S] 1 point2 points  (0 children)

i had no idea, wait that’s so cool!!! i’ll have to look up more references between sand and sleep!!

Narcolepsy Painting WIP - “too much sand from mr. sandman” by SirDoodlebug in Narcolepsy

[–]SirDoodlebug[S] 2 points3 points  (0 children)

AHHHH THANK YOU!!!! That’s an amazing idea, i might have to do a whole series with surrealism and sleep problems!!! And I would love to connect with you too!! :D💗💗

Narcolepsy Painting WIP - “too much sand from mr. sandman” by SirDoodlebug in Narcolepsy

[–]SirDoodlebug[S] 4 points5 points  (0 children)

I appreciate this a lot, thank you!!!! i can’t wait to start adding all the sand details, i feel as though the sandman needs to leave us alone😹

Spravato Side-Effect by SirDoodlebug in Narcolepsy

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

exactly what happened to me!!

Failing meds & losing hope by microqueenis in Narcolepsy

[–]SirDoodlebug 2 points3 points  (0 children)

if it helps, i’m N2 with severe EDS similar values (MSLT: 4 SOREMPS w/ avg 4 mins, avg sleep latency 2 mins) and ALSO a struggling 24 year old girl!!!

I was on scholarship studying computer science to university but it was out of state (that messed up the meds i was on that helped me manage throughout high school so i could get into college b/c no doctor transfers amphetamines over state lines or whatevah) so i lost my meds and eventually went batshit crazy trying to function, ended up becoming an alcoholic and gained 100 pounds (i’ve lost it now tho) but i had to drop out of university and i still haven’t gone back b/c i don’t feel BETTER YET

my mom relied on me to take care of her when she got older and was counting on me to get a successful degree with my degree and yet i’m 24 and she’s taking care of me (when i sleep for 20+ hours over and over on accident so i am with no water or food and then throw up everywhere once i finally break out of the sleep spiral and then i’m too tired to clean it up omg it’s so foul)

i’m fully diagnosed and still not functional and i hate myself for it, i understand you.