u/AngryDesertPhrog

I have Dx’d type 2, but I was thinking today and I’m curious if it’s something weird enough I should bring it up to my MD.

I can’t express anger physically. If I make a fist really tight (only when angry) I physically can’t make it tight. My fingers “spasm”. I can’t punch, hit, kick, or even scream tbh. When I’m really upset I just kinda sit there. My body does feel really heavy in these moments, but I always attributed it to mental exhaustion/dissociation.

This only happens when I’m really really upset, which is rare but it’s always been annoying because I physically can’t express anger physically, even if in a safe way or environment. Instead I just kinda sit there and cry.

Is this possibly cataplexy? It is technically my strongest emotion but I always thought it was just a psychological block.

So I’m on Xywav, and thank heavens that med doesn’t give me any major side effects - it just makes me really hungry some nights. Unfortunately I still have daytime sleep attacks so I still need a daytime med.

Ritilin - get unbelievably sleepy when it wears off

Modafinil - made me irritable and angry

Armodafinil - lost 10lbs in a month and it destroyed my appetite

And now sunosi… which is giving me insomnia.

Now I have to weigh which side effect is the most reasonable. I’m hoping the sunosi is a timing issue and if I take it earlier it’ll let me sleep… so here’s to hoping.

Edit: spelling, I got 4 hours of sleep last night lol

I did this post a while ago, but I figured it was time for a follow up.

For those first getting EEGs - EEGs are best the longer they are preformed. Studies have found that you need 3 EEGs to get a 90% chance of capturing epilepsy, so here is how to order those EEGs if your doctor doesn’t know how.

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You want to ask for a “One hour sleep deprived EEG, with hyperventilation and photic stimulation”

The exact order in Epic (most large hospitals use this application for ordering) is named “EEG extended 60 to 119 minutes”

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If the hospital does not give you detailed instructions, here are general instructions below.

- Take all meds on schedule unless ordered otherwise by physician
- Shampoo hair prior to test, no gels or sprays.
- No hair extensions, weaves, or oil in hair.
- No napping or caffeine prior to test; but no other dietary restriction.
- Have patient stay awake the night before, or get up very early so that they will be tired enough to rest.
- If diagnosis is r/o seizure disorder, it is best to have patients limit their sleep from midnight to 0500
- Please arrive 15 minutes prior to the appointment

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For the appointment itself

- Wear comfortable clothes, pajamas or sweats are a good choice. Wear clothes you feel comfortable sleeping with
- If you sleep easier with comfort items, please bring those.
- It is easiest if you are able to sleep on your back. If you need to sleep on your side please ask the EEG technologist to give you a head wrap to improve quality.

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For the exercises during the EEG

- PS stands for “Photic Stimulation”, it is usually 3-9 minutes of flashing lights at different frequencies. Seizures during flashing lights for adults are very rare. Photosensitive epilepsy is mostly seen in children. It is normal to see colors and shapes in the lights. For people who have migraines, it might trigger a migraine. Motion sickness and nausea are rare, but possible side effects of the flashing lights.

- HV stands for “hyperventilation”, it is usually 3-5 minutes of deep fast breathing. This test will give the best results if you put in effort. Try to breathe deeply and quickly, the more effort you put in the more likely abnormalities will be seen. It is normal to get tingling and numbness during this test, it is normal to feel lightheaded or dizzy. Possible side effects are nausea, chest tightness, lightheadedness and dizziness.

- Sleep deprivation is the most likely to help show abnormalities. Sleep deprive the night before your EEG as best you can. The more exhausted you are for your EEG, the better the results.

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EEG is the best if you are relaxed. Muscle obscures EEG. Try not to talk, laugh, clench your jaw, move your face, or otherwise use your facial muscles as much as possible.

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Feel free to ask questions! I’m a registered EEG tech and have been doing EEGs since 2022, I’m happy to share my knowledge since I feel education for EEGs will only help the diagnostic process for epilepsy! 💜💜💜

I love tomatoes, especially garden fresh ones. Grocery store ones just aren’t the same.

I’ve seen good ones at the farmers market, but other than that, what are the best places for fresh produce?

Curious if anyone has an overflowing garden/recommendations for good produce!

Thanks!

If I wanted a megaphone to announce that I am lactose intolerant, I would have bought one.

-this post has been written by someone who regrets eating pizza

Well, Nuvigil works, but it also has made me drop weight like crazy.

My MD is upping my Xywav by .5, and then starting me on sunosi.

Sad thing is, I have to switch the Xywav first, but also stop the Nuvigil immediately (I guess the weight loss was significant enough it really worried them)

So for the next week before I start the sunosi, I have no daytime meds (minus my lil 15mg focalin)

May the sleep attacks be few, and the naps be refreshing 🫠

Just a general question.

I have a 2yo BP who is very used to being handled. Normally I’ll drape him around my neck/arm daily (excluding around feeding, shed, and poop days)

He’s currently asleep around my neck and has been snuggling happily for about 3 hours.

Normally I’ll put him down as soon as he gets squirmy, but he regularly falls asleep or just relaxes on my shoulders. Sometimes he’ll dig into my hair but that’s about it.

Is it safe to handle him for long periods as long as he is content?

Just wondering if I’m the only person who experiences this.

I’ve had several of these throughout my life, and had one last night which made me think of it.

I sometimes wake up out of dreams due to hyper realistic sudden head trauma. Last night’s was because a building exploded in my face.

I’ve never been knocked out, but it feels like the time I got my head slammed in a car door when I was a kid.

Usually I wake up very startled, I feel like I should be in extreme pain, but I’m always fine. It’s terrifying though, and the closest in my dreams I get to experiencing dying (aside from night terrors but we don’t talk about those)

Wondering if anyone else experiences these or if it’s just another narcolepsy thing lol.

I even ate Taco Bell last week (two spicy potato soft tacos and a cheesy bean and rice burrito)

Would anyone be interested in a boards prep subreddit?

I’ve found that resources online aren’t great for boards prep, and often paid. I was already planning to publish my R. EEG T. and CLTM study notes for free online, but would an actual subreddit be something people would find useful?

Ideas/critiques are appreciated!

Hi all!

I started scanning on Natus, and loved my hot keys and rarely used the mouse while scanning.

Now I’m on Nihon Kohden, and I haven’t figured out the hot key configuration.

Does anyone have any tips to use the mouse less/speed up scanning ability. I cannot for the life of me find a faster way to use the notepad function instead of the comment function (character limit is too small in most cases)

Any help would be great!

The title of this post is an opinion and not a truth.

This hasn’t been discussed as a benefit for narcolepsy, but the possibility that we could get the benefits of slow wave sleep without the need for GHB would be life changing.

For background I’ve been working since I was 16, and am now 26 working as a EEG tech at a hospital.

I’ve always relied on the stress of “oh shit I’m going to be late” to get me out the door, but it always meant I was scrambling to get up. I’ve been lucky enough to make it to work, but my entire work and school career I’ve been consistently 1-15 minutes late.

My managers have been gracious since I’ve been diagnosed, and I always stay 1-15 minutes late at end of shift to make up time, but it still hurts my employee ratings/reviews.

For the first time *ever* I made it to work 5 mins early all week. I finally got the mix of perfect timing on my Xywav dose, timing of my nuvigil, and a shock alarm to finally get me up.

I know making it to work on time is bare minimum for most jobs, but I feel especially in the narcolepsy community we know more than most just how impossible it feels to get to work on time.

Just wanted to share this little win. I’m hoping it continues working for a while! 🖤

I ate pizza in my sleep while on Xywav, and now I have heartburn 🥲

Not only am I narcoleptic, I’m getting old.

Semi poetic rant.

Narcolepsy to me feels like an addiction to sleep.

I wake up in the morning, and usually the first thought through my head is that I want to go back to bed.

I stay awake during the day using meds and caffeine to curb the desire to sleep. Still most days it creeps in and I find myself wishing I could go to bed or sneaking in naps on my breaks.

I get home, eat, and try to keep myself occupied the 4 hours before bedtime. Most days I still give into the cravings and take a nap.

Then at 10, I go to bed, and repeat it again.

I get irritated when I can’t sleep, or don’t sleep enough. But even if I sleep 10-15 hours, I still want more.

If I have a hard day, an argument, or feel emotionally exhausted, I want to sleep to destress.

I escape into my dreams; real life sucks, and even my nightmares aren’t as scary as reality sometimes.

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I’ve had addictions before. To alcohol and caffeine. The feelings I have towards sleep are almost identical.

After a long day I’d crave the relief of alcohol, the way I crave the relief of sleep. When I had an argument with a boyfriend, or family issues, I’d drink. It feels the same when I take a nap after emotional stress.

I get irritable and have a headache when I stop caffeine, the same as when I don’t take a nap. I’d choose coffee over food, the same way I sleep even if I’m almost starving.

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When I say I have narcolepsy, everyone assumes it must be nice to sleep all the time. They always say “I wish I could sleep like you, but my body won’t let me”

The problem is with narcolepsy, as nice as sleeping is, to my body no amount of sleep is ever enough.

My parents told me that they were too bloated after thanksgiving dinner to make me… so they did it the day after.