I am not diagnosed but my doctor has recently ordered a sleep study to see if I have some kind of parasomnia involving sleep paralysis and cataplexy and narcolepsy may be on the table. I've been researching narcolepsy a lot in the past few days and realizing how little I actually knew about it and how poor media representation is of it. Up until starting to read up on narcolepsy last year, I genuinely thought it was just a condition that makes you pass out randomly and sleep for extended amounts of time. I gathered most of this from how I'd seen it presented in films, books, etc. I didn't realize that it's so much more complicated than that so I never considered that my symptoms could be narcolepsy and just beat myself up over being lazy and unable to fix my own sleep schedule enough to stay awake during the day. I'd really like to hear if anyone has more thoughts on narcolepsy rep?

Hi Hi! Some of you may remember my post a couple months back about my MSLT results resulting in a vague sorta diagnosis. I had a sleep latency of 9 minutes and 0 SOREMPS and I had cataplexy confirmed in office. I had left my appointment with an action item of seeing psych to get stimulants instead of a Type 1 narcolepsy diagnosis. All of you who commented really helped me and gave me that push to continue.

The good news is that I got a chance to see a new sleep doctor. This time it was a night and day difference. Their office took the time to listen to my symptoms and reviewed the extensive testing I've had done. Despite my MSLT results they have gone ahead with "yeah you got type 1 narcolepsy and we are going to treat you for it". I asked if I needed to repeat the MSLT and they said they are gonna do what they can with insurance for now. If insurance crys too many rivers they will make me retest. They also talked about getting me on track to take Orzeyful when its available! (Which will most likely need a retest, I'm aware)

So for those with borderline test results. A diagnosis is possible. If the voice in your head is telling you that your doctor might not be the best fit for you, then listen to it. This office seems like they will work me to really find a medication treatment that works with me and my lifestyle so that itself if worth its weight. Try to keep hope and always advocate for yourself.

I was (finally) diagnosed N1 with Cataplexy. I’ve had a lot of moments looking back like, “Oh yeah, that makes sense now.” But a couple of nights ago I had the funniest “aha” moment ever.

In elementary school, there was a boy that I had a huge crush on. I mean massive. A girl’s first crush is no joke, so I was shaking in my boots around him constantly. One day I was at my locker and his was next to mine, and he briefly touched my right hand/arm. My entire arm got tingles and flopped to my side and I sat there feeling weak and tingly. I always looked back at it like, “Yeah, I just really liked that kid.” But a couple of nights ago it occurred to me that I was so excited about the physical contact that I lost muscle control in my arms and my entire body weakened because of cataplexy. Whenever I told people in the past they laughed it off and said nothing like that had ever happened to them. There are little sprinkles of that all over my life where I think of something now and a little lightbulb illuminates over my head.

When I’m excited or scared it’s the worst. If I’m scared my legs give out and shake and my arms start tingling. If I’m excited it’s just my arms. Sometimes it’s random stuff. My roommate did a really good job backing into a parking spot a week or so ago and watching the lines on the screen match up evenly made my arms flop because it was so satisfying. Stuff like that has happened for years and years and years and it just never registered to me that it was abnormal. Also I should’ve known a long time ago that something was a little strange after I kept falling asleep at loud parties and gatherings. You learn something new every day I guess lmao

I just got rejected for Disability, and really wondering if I'll be able to survive this. I can't afford my narcolepsy medication ($300 a month is insane, I only get $330 a month), and I just received my ODSP rejection letter tonight. So much for getting my own apartment, or being able to afford clothes and groceries.

I can't stay awake long enough to hold a job, I had to drop out of school because I couldn't even stay awake for a full class. I'm planning to go in for the internal review and appeal tomorrow but I think I've hit my all-time low. I don't know what to do.

Everyone around me I reach out to is just telling me to get a job. If it were that easy, I'd have one already.

Everyone talks about insomnia and sleep deficiency, but no one really talks about how difficult it is when you have hypersomnia. I don't wanna sleep, but my body is too tired to function. And when I listen to my body and go to sleep, I sleep for 4-5 hours straight(even in the afternoon), and when I wake up, I'm still tired and exhausted. That means I can't focus, and I will forget stuff easily. And then my parents come and literally blame ME for having hypersomnia. And when I tell them I really didn't mean to sleep, they'll scold me for backtalk. It's not like I wanted to have hypersomnia.

Hi. This is my first post. Joined yesterday for help with Xyrem. Ive been on it for 22 nights and my sleep has been awful. I am giving it time for titrating, but the tremors, hands, legs and voice shaking are awful. I was on xyrem ten years ago, but stopped because I had cancer and it was too much at the time. I called the tremors panic then, but its not panic, bc my mind is calm, but my body sure makes me look like I am nervous, anxious, etc. I saw yesterday that someone recommended (thank you) eating bananas, drinking electrolytes, taking magnesium. I did that yesterday and today and it takes the edge off, but my hands are still shaking. It goes away by evening. Does this go away after adjusting to it? Any other suggestions to lower it? can someone explain what the gaba-dopamine rebound is and if this is a terrible thing for my body to go through daily? thank you!!!

I’m 26F and was diagnosed with hypersomnia back in March. My sleep doctor also suspects I have narcolepsy, but I’ll need to be tested again, possibly in a year.
I was first put on modafinil 100 mg, which barely did anything, so he bumped me up to 200 mg once a day in the morning. That helped a little, but not a ton. He then added Adderall IR 10 mg twice a day. That actually helped quite a bit, aside from the afternoon crash. However, as soon as I took my second dose, I felt fine again.

That combination made me feel about 50% better. Not 100% better, but still a huge improvement compared to being on no medication at all. I stayed on that combination for about four months because my doctor wanted to give it six months before making any more changes.

Then, out of the blue, I got sick with a really bad cold that lasted an entire month. Toward the end of it, my medications completely stopped working, and my symptoms became significantly worse. I was NOT doing well. I could barely function. It got so bad that I couldn’t work or drive.

After doing some research, I found that being sick can sometimes affect how well medications work. My doctor ended up taking me off both medications and switching me to Ritalin IR 10 mg three times a day.

I’ve been on Ritalin for about a month now, and initially, I felt like it was helping a little compared to the previous combination. My doctor told me I could take two or three tablets in the morning if needed. However, I feel like even three tablets barely make a difference, and the effects only last about two hours. Obviously, I can’t keep taking three tablets every two hours throughout the day.

Even this week I’m at a major company meeting where it’s a work session all day. I survived the morning and started crashing. Took another dose and felt no different. On a major crash and feel like I want to punch someone hahah. And feel like I’m going to pass out during presentations!!

I tried calling my doctor’s office, but his next available appointment isn’t for another month and a half. To make matters worse, he’s not even in the office this week, so they told me he might be able to call me next week.
I’m really just looking for advice from anyone who’s been through something similar or has experienced medications suddenly becoming less effective.

Like I said, I was only diagnosed nine months ago, so I’m still pretty new to this whole journey, but man, it’s been a roller coaster!

I’d love to hear from people who have finally found something that works for them, what their experiences have been like, or even just hear some rants from others dealing with similar struggles.

Ugh, what a pain it is to deal with hypersomnia and possible narcolepsy. And on top of all that, just trying to get a dang doctor’s appointment! 😩

I’ve been dealing with narcolepsy and cataplexy for more than a decade… why didn’t i go after proper treatment?! My parents, my parents always said that there’s nothing wrong with me and didn’t help me with getting tested and diagnosed… now in my mid twenties, my only problem is that I can’t afford the tests!!! Because of economic inflation, the whole pharmaceutical and healthcare industry is a mess in Iran, especially for people with certain medical issues!!! My parents can afford the tests, but they simply see it to be unnecessary, the amount of ignorance toward my issue is destroying me!!!
I have consulted with a neurologists, they had no doubt about me having narcolepsy, yet they don’t have the permission to put me on drugs without the tests!!!
Until this day I cry out of rage because my middle eastern mom wakes me up by force, or scolds me for being apparently lazy!!! And since I had enough, I have to sell jewelry to afford the tests!!!
And one more thing, yesterday I heard my mom talking to my aunt and nagging about my sleep problems, and my aunts said "when does she want to grow up and stop bringing up excuses!!!" That had me crying in bed!!!
Just wanted to say it, I’m pretty sure that there are a lot of people dealing with this as well, what did you do, please tell me something to calm me down!!!

I like to describe it as molasses 😜 There was a short period of time where I had to stop taking my Adderall in preparation for the tilt table test, so when I'd go to work & my assistants would ask me how I was, I'd just say "the molasses is extra thick today" 😅

hi everyone,

i was recently dx with narcolepsy type 2, and I am struggling. I’m 24, applying to medical school and it feels like my symptoms are just getting worse.

im sleeping 12+ hours multiple times per week and am getting into work late regularly. its not that im not trying to wake up, its just so difficult to get out of bed. I’ve tried alarmy (& memory/math problems to turn of alarms), sunrise clock, & recently a physical alarm clock that runs away from you. No matter what after I turn off the alarm I IMMEDIATELY fall back asleep, like my limbs are so heavy I can’t move.

just got a warning from my job about the tardiness, and am freaking out a little. My surpervisor knows about my diagnosis, but there’s been no official meeting/accommodations talk. I asked a few weeks ago about potentially having multiple breaks a day if it’s slow (using PTO/staying late until I hit that 8 hr mark) but haven’t heard anything back. feel like I have a good, casual relationship with my supervisors so am hesitant to call a formal meeting. Plus just generally anxious about it (& everything). I work in healthcare so you’d think they’d be understanding, but I’m getting the sense from this subreddit that isn’t usually the case.

im currently on armodafinil, after moving up from modafinil. helps a little (i yawn less) but aside from that doesn’t do much but prompt horrific dizziness spells. I know there are more options but worried about other meds/conditions conflicting with their use. @ next appt going to discuss potential ADHD meds since I know that’s the next line of treatment.

I need (1) advice about how to get to work on time. landlord doesn’t allow animals, but considering reaching out to them about getting a service animal that will wake me up in the morning. would prefer cat (more independent if I’m gone at work/school) but can get dog if necessary.

(2) not to be overdramatic, but does it get better? My symptoms seemed to just be getting worse and I don’t know how I’m supposed to work or go to school or eventually be a doctor. being awake just hurts so fucking bad. i keep mourning the person I would be if I could function on 8 hours of sleep like everybody else.

xoxo,

a very sad and sleepy girl

I got dignosed with NT2 back in Febuary of this year and started Lumryz a few months ago and have totally loved getting to take it every night and knock out, but maybe a little too much. When I got my NT2 dignosis I kind of thought that this whole time my depression was just misdignosed NT2 but recently even with all the daytime (IR Adderal and Sunosi) and nightime meds, when I wake up I still want to go back to sleep. Some of it is lingering sleepiness and some of it is just the Lumryz is amazing, I have just so enjoyed the uncomplicatness of taking it and knocking out. I just have recently found myself waking up and the first though I have is I cant wait to take it again to go back to sleep, which honestly has been a bit scary for me. I would love to just be able to wake up and want to continue with my day.

Has anyone else had a similar experience? I have seen some people get worse depression/anxiety because of oxybates so could that be a part of that? Or is my dose maybe too low (7.5 mg) and a higher dose might make me less sleepy? I appreciate any advice! I am just a bit nervous to talk to my sleep doc about it because I am worried they will say its a depression thing. And side note: does anyone else have a hard time juggling a prescriber for mental health meds and sleep? With all the overlap its been so frustrating feeling jerked around by changes with both meds especially when one changes one med that interacts with another.

Here are some things that I’ve noticed:
- greasy/oily hair and face
- incredibly strong fingernails that grow very quickly
- weight loss
- feeling well rested for the first time
- having a normal appetite for the first time
- developed debilitating (likely already underlying) anxiety and depression and started lexapro
- toenail fungus present for years finally disappeared

What are some things y’all have noticed on your sodium oxybate journey?

I've been having a issue lately (a few months) where any time I am stressed I fall asleep. This happens when I'm doing homework at the table, during state testing, whenever I'm anxious ext.

Whenever I'm trying to accomplish any task that takes mental energy while I'm sitting down, I'll either feel myself falling asleep and not be able to stop myself or I'll just wake up a few minutes later confused.

Sometimes I'll have 'stress naps' where I'll sleep for 6+ hours midday by accident because every time I wake up, I'm stressed again (and usually even more than beforehand because I've wasted so much time being asleep on accident) and I just fall back asleep... over and over.

It's becoming a huge burden on my life and I'm not sure what to do. I don't think this is narcolepsy as far as I know, but I just want to know if anyone else has this experience, and how these sleep attacks can be managed if possible.

(Just to be clear I'm not seeking a diagnosis of any sort, I guess this is kind of just a vent and I don't know anyone else who would understand.)

I suffer pretty severe symptoms and struggle to do tasks to take care of myself(hygiene, errands, cooking, etc.) I really have to rely heavily on my support system. I’m so blessed to have people who care about me, but I just feel so massively, anxious and guilty and ashamed most days.

I think they may be under the impression that as time goes on my condition will get better, and I’ll learn how to manage it enough to get a regular full-time job and live someone normal life, but I don’t know that I’ll ever really be able to hit those milestones. I’ve been in a lot of environments where I wasn’t able to be disabled so I usually mask my symptoms and accommodate in silence, but that’s so taxing. I want to just let myself exist as is without having to hide anything to make other people feel comfortable, but I worry they’ll view me as a failure and leech.

I hope they understand that when I say that I can’t do these things I’m not saying it to be defeatist or am self-sabotaging because I don’t wanna try. I’ve desperately been trying to push through and manage a “normal” life and ruining my health by doing so. I can barely work 20 hours a week without falling collapsing. There is so much grief I have to process too associated with the life I thought I was going to live versus what I’m currently experiencing. I’m receiving counseling. I am medicated. I’m also on a waitlist to get with a caseworker to sort out housing and disability claims because I also have ADHD and anxiety disorder.

I’m not giving up on my life. It’s the opposite actually, but fully allowing myself to drop the farce and intentionally choosing not to mask is terrifying. I am trying my absolute hardest to survive. I know that better than anyone, but I worry that my loved ones won’t and are going to abandon me once they realize my condition itself is not going to improve. I really can’t do this alone. The only thing I can really hope for is that I receive extra support so I can survive and possibly live a higher quality of life. Does anybody else struggle with this or feel this way? How do you manage?

So I've been like extremely sensitive to the cold since I was like 9 years old. I've started having strong Narcolepsy symptoms since I was 13/14. I've finally got diagnosed at 17 years old. And I've read some research that heat sensitivity can be connected to narcolepsy. Does that apply to cold too?

To be more specific about the sensitivity: at the slightest breeze I freeze while others feel normal. At the normal type of cold for other people, I tremble so strongly, it looks like I'm having a seizure while standing up. My lips get blue sooo quickly and I need one or two blankets in the summer (four during autumn or in the winter).

Can anyone relate or does anyone know of it being connected to narcolepsy?

Anyone else with no social life these days? I can barely muster the energy to see immediate family a couple times a month. Besides that, I text and maybe send some voice messages to old friends, but I don't have any real social life. Just too damn sleepy/fatigued all the time.

Not looking for suggestions or practical advice. Just some mutual commiseration.

Hi all,

I was just wondering what everyone eats when their narcolepsy is at its worst?

I’m very lucky to live with my partner who is very supportive with cooking, but days alone I really struggle to workout what to eat. Fast food/microwave meals are better than no food at all but make me feel gross afterwards.

Hi— my son 19yo has N2 and it is not well managed right now. We have a new doctor and are working towards solutions. He is in bed most days because he is tired. He takes meds for anxiety/depression and says his tiredness is from narcolepsy. He’s newly diagnosed (< 1 year), had to withdraw from college and just had to deal with a lot of disappointment as I’m sure many others have had to deal with as well. I’m just curious — how did you know the difference? What kind of support can I give as a caregiver? Right now I’m an annoyance full of suggestions of what he can/should do — go on a walk, sit outside with me, go to the store etc. I just feel like it’s not ok for him to lay in bed in a dark room on his device the bulk of the day. Any help is much appreciated.

I just got a notification from Emory that my sleep doctor was leaving at the end of the month - weirdly, this is the second time this has happened in the past 12 months, both times at Emory. Hmm.

I hate having to choose a new doctor without any context - especially considering the monthly battle to get medication to the pharmacy. If anyone has any local recommendations (or people to avoid) I’d be grateful for your thoughts!

Due to bad experience at recent followup with my physician... I am questing everything. What exactly nightime sleep disturbances do? does it even wake you? wake up briefly or awake for hours? i haven't really thought about it.

I usually wake up several times at night to pee. Sometimes its 2 times sometimes it 10. I have trouble getting comfortable with temperature.. cold, hot. warmth sensation in feet sometimes even cold but only during sleep and this sensation disappears sometimes in the night. Sometimes i just wake up for no apparent reason and able to get back to sleep.

what exactly nightime disturbance means for you?

Please don't recommend Sodium Oxybate as its not available in my country.

I slept for 4/5 naps and didn't have any SOREMs, although it felt like I slept through all of them, and I thought I was dreaming in at least 2. My average sleep latency was 11 minutes, which is not indicative of narcolepsy or IH. I'm a little frustrated that my diagnosis journey didn't come to an end as quickly as I wanted it to, but at least I've ruled those out I guess.

Also, my results weren't "normal". My REM latency during my PSG was 208 minutes, which is about double what the normal range is, so that's something I guess.

My follow up isn't for another week, so I'll try to stop worrying about it until then. Hopefully I can be a less exhausted person soon.

Does anyone else love the cold? It was 10° degrees the other day and I was walking outside with my partner. She was complaining a little bit about how cold it was outside, while it made me very happy. I feel like the cold weather just gives me a little extra support, I can go just a little longer without taking naps and getting sleep attacks. It might be just a personal preference not related to my narcolepsy, but I am curious how this is for you all.

So I live in Germany and take 36mg of Wakix, 200mg of Modafinil and 5g of Xyrem a day. My co pay for each refill is 10€ ($11,22) and about 30€ ($33,66) a month (little more as I need a refill every 20 days(.

Next year the cost is gonna rise to 15€ ($16,73) per refill which will run me to about 45€ ($50,49) each month. This sucks a lot 'cause that's expensive and I'm gonna look into government assistance for my medication. I'm a normal income household btw. I could afford it, but I don't really want to, cause it's still a lot (adding my other medications too).

How much is your co pay in your country? And is it manageable for you?