#narcolepsy help

[obsidianflow]

Could someone diagnosed professionally tell me about the diagnostic criteria as well as symptoms (non prof diagnosees pwease answer w your symptoms and experience as well)

[puppetmaster13u]

Prompt 290

Ghosts have the habit of taking names of those they’ve defeated. Not in spars or play-fights of course, and one has to actually be an adult for the instinct to hit, but it happens. It happens far more often than one would think. 

Jason? Actually has no clue when he comes back to the living why he stole one of the Joker’s older names, nor why the Pit goes so angry when he thinks about Robin- HisTitleHisFraidNameFromFamily- 

Now the Pit? Not a baby semi-near the cusp of adulthood, in fact is Very Old even if it’s more hivemind-esque then a full on realms entity. Very offended for the Baby it was gifted, because who takes that from a literal infant?! 

Oh! Oh that’s another baby! Hm, change of plans, obviously the baby is also its. Because while adult ghosts trying to forcefully take a Name is a direct challenge? A ghostling- or in this case liminal- doing it is an open invitation for adoption. 

[otterish]

A weird favor please...

I'm in a weird sort of bind... You see, I'm autistic, and along with that, I have narcolepsy and misophonia. What does this fucked up collection of weirdness mean? It means I am very sensitive to sound (The misophonia and the autism), and I have seizures that are triggered by stress and the tension headaches I get because of my spinal fusion.

Why all this info? You see, I have a lovely little MP3 player loaded with the most perfect white noise that is guaranteed to calm me down. It takes corded headphones, which is great because I can never find any bluetooth buds that fit in my ears. I have a birth defect that makes it nigh impossible to find any that fit. I did find some amazing corded earbuds though! They are the JVC Gummy in ear earbuds, and I've been using them for over 10 years. They only last about a year or two, but they are like 9 bucks and fit perfectly. Here is an amazon link so you can see what I mean: https://a.co/d/0drGMzDN

The thing is... I can barely afford food (We were on SNAP but they fucked everything up. AGAIN!), let alone the earbuds I need. One of my main misophonia triggers is anyone snoring, mouth breathing, and even sometimes just breathing normally. My husband snores really loud, and tends to have a stuffy nose a lot, so I cannot sleep in the same room with him if I don't have my headphones. If I had to, I would find something sharp and puncture my ear drums. It causes that much anxiety that I sincerely want to lose my hearing.

I'm down to my last pair of headphones, and when I couldn't find them at first I had a severe melt down. I wear them to bed due to my husband snoring, and I want to stay near him. I sometimes rest my hand on his back to feel him breathe, and when I wake up screaming due to nightmares, he always wakes up and holds me until I stop crying.

I know this is a long post just to ask for earbuds, but they work best for me and my sanity depends on them. If you can, I'd love it if you were able to slide one or two my way. I'm not picky on color, so my amazon wish list link is here: https://www.amazon.com/hz/wishlist/ls/GTTJGT54GKDN

If you want another way, my cashtag is $JustAddOtter.

THANK YOU SO MUCH IN ADVANCE! My disability case is still going slowly through the pipes, plus when it goes through I'm going to have to pay $85 out of pocket for some blue lenses which will help with the seizures.

Also, may the assholes who removed headphone jacks from phones always have angry wasps land in their ears.

TL;DR: I need new headphones to help with my disability.

BTW, no guilt in not donating or even not reblogging but I would appreciate a sage nod of understanding when you read this.

EDIT: Thank you to those pointing out that my wishlist wasn't working properly, it's all fixed!

[naffeclipse]

Instead of a raging insomniac, what about Sun and Moon handling a Y/N who is a furious narcoleptic? It would involve Sun coaxing Y/N to stay awake because yikes, even Moon agrees that it's a problem to sit down for one second at the security desk and immediately slump over into a dead sleep.

[tmgstudios]

[long post, sorry, theres a tldr at the end but i really recommend reading the full thing if you can]

i really wish there was more like. narcolepsy awareness stuff in the world. that teaches people the actual symptoms and not just the stereotype. the amount of people i have talked to both online and in person about my experiences with narcolepsy who have been shocked at how much they related to my experiences is staggering. 

narcolepsy is so under-diagnosed and also very often misdiagnosed as something else because so many people, even within the medical field, don’t know the actual symptoms of narcolepsy (i am not pulling this out of my ass, my sleep specialist has told me this several times. its a real issue that sleep specialists continue to battle to this day). up until relatively recently, the past 5-10 years or so, narcolepsy and other similar sleep disorders weren’t even considered real by a lot of the medical field!!

narcolepsy is not “falls asleep at random” disorder. narcolepsy is a disorder of sleep cycles, causing the brain to enter rem sleep much quicker and more frequently then it should. 

this causes things like excessive daytime tiredness/chronic fatigue, extremely vivid dreams, sleep paralysis, hallucinations while waking up/falling asleep, and in the case of those with narcolepsy type-1, cataplexy (aka, while feeling intense emotions the brain will enter rem sleep while awake, causing muscles to lock up. this is where the “falls asleep at random” stereotype comes from, but the person experiencing it is not actually asleep, just unable to move their muscles. i can’t really speak more on this specific part of narcolepsy, since i have type-2, aka narcolepsy without cataplexy, this is just the basics i was told by my sleep doctors. EDIT: someone who experiences cataplexy has added their experiences in a reblog, if youd like to learn more please go take a look!!) [note: these are not the only symptoms of narcolepsy. not all people with narcolepsy will experience all of these symptoms, and everyone will experience them at different frequencies. for example, i only get sleep paralysis once every month or so, and my hallucinations tend to be limited to auditory] according to my sleep doctor, narcolepsy also has links to both adhd and chronic strep throat as a child (i have no idea how that last one works. but. thats what my doctor said and hey. she was right. i had chronic strep throat as a child and look at me now.) EDIT because i forgot to add: narcolepsy can not only co-exist with insomnia, but cause insomnia as well! excessive daytime tiredness --> more naps during the day --> harder time falling asleep at night

so yeah. i guess this is me doing awareness. if you relate to any of these symptoms, please talk to a sleep specialist if you’re able to. it might not be narcolepsy, but chances are it’s something, since none of these things are normal (to repeat, excessive daytime tiredness is not normal. that means there is something wrong). theres nothing wrong with asking a sleep specialist about narcolepsy and getting tested for it, even if you come back negative. 

my dms and askbox are open anytime for any kind of questions about narcolepsy, the diagnostic process, treatments, etc. while i am not a doctor, i have learned a lot through my own experiences, talking with my sleep specialist, and also my own research, since i’m currently studying to hopefully make narcolepsy research my career! whether you are questioning having narcolepsy or not, you are not bothering me with questions, i promise, you asking will probably make my day

TLDR; narcolepsy is a very misunderstood and underdiagnosed sleep disorder, and i highly recommend everyone learn about what it actually is and what the symptoms actually are, and if you relate to any of them, talk to a sleep specialist

[other narcoleptics feel free to add on to this post with your own experiences(and also to message me i always want to talk to other narcoleptics ASJDKHJ), and non-narcoleptics please please feel free to reblog! i really want to start spreading awareness for this disorder, since again, severally under/misdiagnosed and most of the world is still under the impression that the narcolepsy stereotype is true]

[rosesandthorns44]

Idiopathic Hypersomnia Life Hacks I Am Currently Field Testing:

Putting my shoes on and not taking them off so I can't get back in bed or lie down on the couch. (Roommate's genius suggestion I wish I had thought of. I don't like wearing my street shoes in the home, so perhaps I need separate indoor anti-sleepytime shoes. I'm not a crocs kind of gal, but perhaps just for at home)

Washing my bedding on my days off from work so my blankets cannot beckon me with their siren song (also, I get horrible night sweats. I wake up DRENCHED, so my bedding needs the extra washing anyway. Anyone else with IH or Narcolepsy have this???)

Not sitting down to watch TV or play video games unless I have finished my to-do list first.

Post-it notes everywhere. For everything. I wouldn't even remember to brush my own teeth if I hadn't put a post-it note on my bathroom mirror

Other Hypersomniacs of any breed, please feel free to add your tips and tricks.

[omgcatboi]

Last night I got door dash and my Dasher only spoke Spanish. It took a while to get my food because door dash sucks and pings the wrong location for my address.

This guy was extremely devoted to delivering my food despite the language barrier. So I gave him a full star review 🤷‍♂️ it's not his fault that door dash fucked up the GPS location.

I also got offered a fist bump which I absolutely took the offer on lol.

Anyways door dash fix your GPS and stop stressing your employees out challenge: POSSIBLE BUT YOU REFUSE TO.

[adelle-ein]

i keep going "let's solve this health problem!" and then it turns out to just be fibromyalgia again

[arcane-clown]

Why is getting ready in the morning so difficult does anyone know anything about excessive daytime sleepiness / narcolepsy and have like tips and tricks for forcing the body to move when it literally cant but ive got stuff to do like literally just walk down the hall to go to the bathroom (and like i have more than just that to do but mornings suck so much)

[athetos]

Also you know it’s bad when on the first session of therapy you’re describing your insomnia/nightmares and how nothing is working that you’ve tried and they say “yeah I’m gonna be real with you I think medication should never be a first choice in these situations but it seems that you’ve exhausted every avenue over the past 2 months I think you should strongly consider prescription sleep aids”

[oldtvandcomics]

To get some positivity in this tag: Let me tell you about my recent bustrip to Prague! While narcoleptic. It was really great, and a bit tricky, and I think we can use some stories of disabled people doing fun things.

Background story: I was visiting my grandmother, and took the bus both there and back, because it's different, and because I really wanted to actually see some more of the Europe I spent my life running there and back through (we live in the West, my Grandmother in the East). On the way back, I spent two nights in Prague. It was a highly anticipated part of the trip, as I still kind of miss the city after my one year there. It was also the most tricky part of the whole thing to manage.

You see, my bus arrived at 6.00h, and check-in at the hotel was at 15.00h. Which is a good nine hours between the two.

I am pretty much guaranteed to fall asleep every three to four hours.

Rest of the story under the cut.

For those not aware of the weather right now in Eastern Europe: It's COLD. And SNOWY! So when I arrived at the bus station, my first reaction was pretty much "Nope!", and I went into the bathroom to put on an extra layer of clothes. I was fine after that.

You can walk from UÁN Florenc bus station to the Old Town pretty easily, which I knew because as I said, I've been there before. So I walked there, and stopped to buy myself some breakfast in a big supermarket at a metro station. After that, I went the usual way down to Old Town Square and the clock, and continued on to Charles Bridge.

At that point, it was still only between 7.00h and 8.00h, so of course there was close to nobody on the streets, only the people who had to be there. And snow. Lots of snow. Charles Bridge. People. Charles Bridge, normally black with age and full of tourists, was WHITE! And almost completely empty. I was there at sunrise. It was impossible to describe beautiful.

Pictures don't do it justice, but here are some. The river. People. The river was damping!

And yeah, this is Old Town Square.

I usually don't get this magic-place-feeling from Prague, because the people cover it up. Which is actually one of the reasons I like it, they cover up some of the useless noise in my brain, too. I'm more functional in a big city.

Anyway. This was clearly an exception. It really felt like walking in a wintery fairy tale. The only thing missing was a ghost.

After that, I went to the hotel, and dropped off my backpack. I like to travel with a light luggage, which made moving around earlier possible. And hotels are fine keeping luggages locked up in some room before check-in and after check-out.

I then took the tram number 22 direction Nádraží Hostivař. This was planned. One, I know the line, and know that it passes by two big shopping centres. Two, I know that I always fall asleep on any moving vehicle, and public transportation is a reasonably safe place to sleep.

Which is exactly what happened, I woke only when I was at the second shopping centre. So I went and looked at some shops, and bought myself a gift of three ice bear figurines. I sometimes like to take pictures of these plastic figurines, and the snow triggered that. I'm very sorry that I didn't have my actual collection with me. But the bears did a wonderful job, too.

This was behind a random tank station, where there was a table with benches where the snow was still completely untouched. So I played a little around there.

Then I took the tram to the other shopping centre, fell asleep again on the way there, looked a bit more at shops, had lunch in the KFC on the top floor and finished my book, then it was already time to take the tram back to the hotel. I fell asleep during that trip again, then I went to the hotel, checked in and got my room. All in all, I had managed to survive those 9+ hours without any greater discomfort, which is, honestly, better than I'd expected.

The end. Here are some more bears from the next day.

City wildlife. <3

[nightinghoul]

Well, after weeks of evaluation, today I got my OFFICIAL official narcolepsy diagnosis, and something new: AUTISM!

Well, I'm not surprised in the least. I used to be nonverbal in school and public spaces. I'm very high masking now, because I was bullied.

My psych said something that struck me as, "were going to treat your autism..."

I told her just want to to be myself without feeling inferior.

Because last time someone yelled at me, "WHY DON'T YOU LOOK ME IN THE EYE WHEN I'M TALKING!?" I answered, "Oh, sorry, I'm just... I have something wrong with me." 😑

[mooneln0ne]

hey idk if it's sensitive to ask, but how did you exactly almost die? (you can ignore this question)

It's ok Anon, I don't mind answering!! This week was my exam week and I'd been studying, sleeping, and drawing and I think it tired out my body to the point where I accidentally dropped to the ground and started twitching. I think it was because of my anemia? idk I'm fine now, that's really what matters to me My little brother told me that I looked like I died because I stopped moving after the twitching, so there's that

[welcome-to-latveria]

POV: you have narcolepsy and you went on the narcolepsy tag again

[alighted-willow]

Hi, hi, hi, pause for a moment.

If you take Adderall and its effects are completely undependable, try taking it on an empty stomach. Don’t eat for the two hours before nor the hour after; empty stomach.

I take extended release Adderall for parasomnias caused by Long-Covid (which basically translates to “My brain doesn’t sleep when I do, I'm exhausted during the day, and I feel physical pain in my dreams). I'm also an ADHDer and autistic, so when the Long-Covid acts up everything else does too.

I kept asking professionals about how to get my meds to work regularly and with some degree of dependability. None of the people I asked really knew, which meant I had to figure it out via trial and error and my own research. To save any others the hassle, we're running through the list of highlights:

If you have digestive problems, your gut's probably pretty acidic; Adderall cannot absorb in an acidic system so drink a ton of water, don't eat anything processed (breads, cheeses, etcetera), and preferably take the meds on an empty stomach.

Don't eat fruit nor vegetables around when you take your meds. Nearly everything has vitamin C (citric acid) in it.

Don't eat dairy products other than milk around when you take your meds; a kind of acid (normally from the stomach) is added to culture the milk into butter, cheese, and all else.

If you have a menstrual cycle, your hormones will effect absorption. Not much you can do there. It might not adsorb at all during blood week, it absorb ten times more strongly during ovulation, you might want to keep track of that sort of thing.

Caffeine can exacerbate the effects of Adderall, meaning that if it doesn’t absorb on a day when you really meed it to… you can consume something caffeinated to try and bring it up as needed. Not suggested but sometimes helpful.

Others please add on.

[dont-read-this-im-dead]

I have a friend who has narcolepsy. She also has ADHD, but she didn't KNOW she had ADHD until she started taking her narcolepsy meds. But she could tell there was a difference, so she went to the doctor, and they were like, "yeah, the meds also help with your ADHD," and she was like, "THIS EXPLAINS SO MUCH.