I am on 70 mg vyvanse 9 g total xyrem. With this I can function well and work full-time 40 hours a week. I get home from work at 5 pm and even though I'm not so tired that I can sleep- I am so tired I can't bring myself to do anything other than lay down until 8~9 pm bedtime. I pretty much only get to do the things I enjoy on Saturday and Sunday.

I know this is much better than the alternative which is being unmedicated and not being able to work much + sleeping all day. Idk though it hurts to see my friends hanging out until 11pm being active while I'm bed bound. Is anyone else like this? How do I accept this and make peace that this is my life? I am extremely envious of others and it makes me bitter.

Anyone else get what I have just coined as narcolepsy migraines? For me it happens when an alarm, or a person wakes me up during rem sleep. It is a recipe for disaster for me and why I can no longer use an alarm. Luckily for me, xywav keeps my wake up times pretty predictable depending on when I take it so I can play with different timing based on my wake up needs. Every once in a while I’ll get woken up by my “last minute” alarm which ends up being useless anyway since I’ll have a migraine too bad to actually get up and make it anywhere. Not sure how I’ll deal with this issue in a relationship though (and thank god no kids)

I know I’m in the minority here, and most people do not have these side effects. I started Xyrem thinking “this is going to fix me!” and was so full of hope…

…but this medication SERIOUSLY changed my sense of inner happiness, my confidence being an adult in the world, my contentedness with alone time.

It’s been at least two months since stopping the medication, and the sense of feeling sad and lost isn’t going away.

While on them, I was debilitatingly anxious, to the point where I couldn’t leave the house without someone to be “attached” to. I couldn’t be left alone, either, without breaking down crying. I lost all interest in food: eating and cooking, which used to be one of my passions.

My job is being a science influencer, and now I am nervous to even put myself out there, in case I’m negatively judged. I NEVER felt like this before this medication. I miss how confident and extroverted I used to feel.

Has anyone fully recovered from this? My love of food came back, but I’m still waiting on the rest to fully return…

24f. narcolepsy type 1 since childhood, diagnosed at 18 after 4-5 years talking to sleep specialists.

been waiting so long for these oxybates alone (a year and a half at least)—-through appointments with different specialists who dgaf, don’t know anything about N, or refuse to prescribe anything—-before finally getting a prescription recently.

i’m miserable. i’m already obese and anxious beyond reason. i desperately need real sleep. i cant think i cant remember. i want to cry . im dysregulated beyond measure. and then everyone here says how terrible oxybates can be for one reason or another, side effects-wise. i cannot afford to be gaining more weight or being more anxious.

i just want these orexin agonists so bad too. diagnosed via spinal tap ~2019. orexin levels are next to none. and apparently orexin is pivotal to regulating like 900 different things in the body. every day i don’t receive treatment i suffer more and i feel like i’m going to lose it. i feel like im at the edge of it all but cannot wait any longer.

for context, i’m on max dosage stimulants and antidepressants, and didn’t wanna try anything new while in college bc i didnt wanna throw a spanner in the works while getting my degree, esp bc i wanted to study abroad and didnt wanna deal with the logistics of going abroad with oxybates.

now that i have a degree and a low-key part time job with accommodations, about to start a new therapy, i feel like i’m in the best place i could be in, but i also feel like I’m at my breaking point. even now, all i can do is work.

i used to go to the gym after work for abt 30 mins doing light cardio. that lasted 8-10 months and it was great for me, but it also made me more prone to becoming drowsy on the drive home and i found myself having to pull over, so i quit. i can’t even go out with my partner 90% of the time because im anxious and angry and overstimulated by everything because i wake up like 100 times a night.

every day my body is running on like 2 hours of rem sleep and prayers. it’s like i can’t have anything at all. this disorder has just ruined everything. i don’t want to live like this

tl;dr: lord give me strength

Anyone else been given an Rx this low?

For context, I was on 40 grams a day for years (ADHD) and was still falling asleep sitting up during classes, after meals, etc. I was not diagnosed with narcolepsy, and went off it due to other health issues that are now resolved.

I got diagnosed with narcolepsy and have been on Xyrem for months now. I am still falling asleep during the day and am not functional enough to work. Told my provider I cannot go without stimulants and if it is a no go I will need to file for disability. She agrees to Rx 5 mg adderall that I must cut in half. I may take one half immediately upon waking and the second half but only before noon. Otherwise it will "affect my sleep". On Xyrem.

I told her I was passing out no problem on 40 mg and she says "not while you were on Xyrem", implying the Xyrem makes stims more effective.

Anyone else successfully functioning on 2.5-5 mg adderall a day?

So I’ve been diagnosed with NT1 for about a month or so now and I was given Adderall 10mg twice a day, and lately it’s just not working for me at first it was good it helped i was awake and alert not feeling tired it was great. I don’t know what I am doing wrong or how I could have possibly built a tolerance so quickly because I don’t take it all the time just the days that I actually got something going on like work, or school. Sometimes I have short days so I only take it once since I will be home in the afternoon. Right now I’m trying to do doordash to make some money because my job situation sucks and i’ve recently have took on another job that I start this week but yk my pay wont come in for awhile since they are biweekly. I just don’t know what to do genuinely makes me feel like just giving up because I want to be productive so badly but it’s just such a wave of exhaustion that hits me and I can’t quite focus things the way I want too. I don’t know, I just needed to be able to write down how i’m feeling today and just need someone who can relate I’m sick of feeling this way, does it ever get better?

school... the bane of my existence. it was terrible even before my symptoms got worse (though to be fair, i was also unmedicated adhd during that time :') ) but its only gone downhill!!

everybody is alright with your disability until it actually starts to disable you, and when it does and you ask for a little grace because of it, youre "making up excuses." its so tiring being blamed for something i cannot control or predict, because trust me, if i could work, i would!

"just get more sleep! maybe its cause you stay up so late." as if i havent been trying to do those things for ages. as if i dont sleep more than enough, and even then, "enough" wont be able to keep me awake through the entire day.

im a responsible student. i really try to be. i turn in my things on time, i participate, but god forbid i dont do one of those things FOR ONE DAY!

i wish people didnt think i want to be disabled. i don't, and there's nothing that hurts more than knowing that even at my best, im still not enough.

Just want to hear success stories and what you did to treat it.

Ok so I was diagnosed about 2 years ago and lost my insurance shortly after. I was only on xywav for a month (i got a free 1 month supply while waiting on insurance approval but like i said i lost my insurance) so i haven’t been receiving treatment. At this point not being treated is having a severe impact on me physically especially with the extreme stress i have been under with my GF being hospitalized most of the last 1.5 yrs and being on a ventilator and a few months ago becoming her 24/7 caregiver with virtually no help… I am truly starting to fall apart.

Does anyone have any resources that could help me with seeing a DR/being treated? (Texas) I know the company for xywav has this assistance option for people struggling financially to get it for “as little as $5 a month” which is great but i cannot afford to see a sleep doctor to obtain said prescription as i have been out of work to care for my GF. It’s a mess. So please any help/resources would be beyond appreciated!!

Long story short: I got diagnosed with IH and suspected narcolepsy but they can’t do the narcolepsy test because I take Effexor and apparently that cancels something out?

I’m struggling so much right now with the exhaustion I feel like I’m constantly moving through mud and it’s so hard in my mental heath. I want to try meds but I’m nervous to feel better and be stuck on them forever.. I guess I’m looking for someone to tell me there’s a light at the end of the tunnel or my quality of life could change for the better if I try them.

Update: thank you to everyone for reminding me that trying meds might just change my life and being on meds isn’t that big of a deal if I can have a better life.

I know I’ve already posted a similar question but does anyone have any last minute packing recs or tips (or snack suggestions to grab)?

It is open enrollment for health insurance at my company and I am wondering if I should go to the highest / most expensive tier in hopes they will cover specialty medications such as orzeyful. Does anyone have any insight into if this is necessary or if they are considering doing the same? I also don’t know if the drug will be in available through insurance in the next calendar year but want to try it as soon as it becomes available. Thoughts?

I apologize for such a lengthy post. My most important questions are at the bottom.

I am on my second sleep doctor and it seems like I need to see a third. I have seen so many specialists and have been cleared of any other reason, including psychiatric. Both sleep doctors I have seen were neurologists. First sleep doctor only did a PSG and sent me away after no sleep apnea or PLMD. This test was done while I was on REM suppressing meds (which I have taken 6+ years daily) so my REM sleep was at 3%. I had an arousal index of 18.1/hr as well as “abnormal K-complexes” and he said this was likely due to severe, chronic parasomnias. Second doctor was certain I have narcolepsy after actually asking me questions about my life. He told me I am experiencing hypnogogic hallucinations and cataplexy. He also told me my strange nighttime behavior is NOT random and further indicates narcolepsy (lifelong history of sleep walking, talking, intense nightmares, acting out dreams, confusional arousals, etc).

I felt really validated and so happy I was going to get help. I tapered off the REM suppressing meds for a month and a half. Then I did the tests at his clinic and it all went downhill. PSG went well and I was comfortable and calm. Then during the MSLT I had intense anxiety related to PTSD (environment/context of being prompted to “lay down for a nap” was very similar to CSA I experienced). My watch captured my heart rate at upwards of 115-120 during times when I was supposed to be napping and my rate during the PSG was 50-60s. I felt my body rip me awake as soon as I drifted off and then I would sit there the rest of the nap trying not to cry or panic more (which is very unlike my naps in real life obviously). I mentioned this to the tech but he didn’t seem to leave a note. I was deeply affected after the experience and I spent the rest of the week hysterical whenever I thought about it. This is very uncharacteristic for me because I have done extensive therapy.

On top of the anxiety piece, I felt physically unwell and the environment was loud and overstimulating. They did not offer food so I went the whole day hungry as well. Overall it was just horrible in many ways and I feel like the doctor took all of these things as an excuse as to why I failed.

During my follow up, the doctor essentially said I am lying about being tired. He was very confusing because he said my diary showed excessive sleep + IH and my MSLT report said possible IH as well. But then at the same time, he said there is zero evidence that I am tired. He also claimed I did not sleep for any naps (???) but my report showed I slept in 4/4 naps (somehow). My avg sleep latency was 10.75 mins for the MSLT (12, 10, 11, 10) and 4.5 mins for the PSG. No REM on the MSLT. The report didn’t have any info on REM latency for the PSG so I have no idea if I entered it quickly, but it was still low at 14%.

I am now left feeling like maybe I was wrong. I am not sure what my next move should be because clearly I cannot handle another MSLT without significant accommodations. I don’t know if anyone has a situation like mine, but if you do, I would really appreciate any insight. Has anyone else had to go through several doctors? Was anyone diagnosed or treated despite negative testing? Did anxiety affect your results significantly? Did you do better during repeat tests? Is there something you said that helped your case? Also am I wrong to believe that a normal person wouldn’t sleep all 4 naps?? Anything helps.

My 17 year old daughter was finally diagnosed with Narcolepsy type 2 without cataplexy. We're currently waiting for all of the paperwork and nonsense to go through so she can start Wakix. Has anybody used this, and what's your thoughts on it? She has been failing her classes because she can't stay awake, or she will be so drowsy she doesn't know what's going on around her. We're really hoping this helps her!

Hi everyone,

I’ve recently been prescribed Elvanse (lisdexamfetamine), and I’d love to hear from others in the narcolepsy community who have taken it.

I previously took methylphenidate (Ritalin), so I’m especially interested in hearing from anyone who has tried both. How did they compare for you in everyday life?

A few things I’m curious about:

• Did Elvanse help with daytime sleepiness, or did you mainly notice improvements in focus and concentration?
• How long did the effects last for you, and did you experience a noticeable crash when it wore off?
• What were the first few days or weeks like? Did your experience change over time?
• Did you notice any effects on appetite, mood, or nighttime sleep?
• Was there anything you wish you’d known before starting?

Beyond simply staying awake, I’m curious whether it made everyday activities feel more manageable and improved your overall quality of life.

I know everyone responds differently, but I’d really appreciate hearing your experiences — positive, negative, or somewhere in between. Detailed stories and brief impressions are equally welcome.

Thanks for sharing!

Hello all,

Today I (24f) fell asleep driving and I ran off the road with only a flat tire to show for it (thank god). I have been struggling to get a narcolepsy diagnosis since I was 12, and it’s hard to give myself grace when so many people are telling me my experiences aren’t real but I don’t want this to happen ever again..!

At this point I’m wondering if actually obtaining a diagnosis would even be worth it in the long run. I would need to wean off my mental health medications which is my biggest concern, especially since that’s what I have been trying to treat first although at this point I think the sleep is truly my biggest issue. I’ve already seen probably 4 different sleep specialists at this point and none of them seemed to truly listen to what I was saying.

With a diagnosis, has anyone noticed mental health improvements due to correct treatment from doctors? I’ve tried stimulants (modifinal and armodafil) and the basic tools I can (sleep hygiene, better circadian rhythm, caffeine restrictions, etc) but I still haven’t had a day without nodding off for hours on end. And with it now effecting how I get around for work, school, fun, it’s impacting my life in such a profound way I don’t know if I should keep pushing the mental health or the sleep side more. Thoughts?

TLDR;; does having a diagnosis really help?

I started welbutrin xl 4-5 months ago and even though it was so amazing in the beginning, the last 2-3 months I am noticing that I get more sleepy, especially during things I used to be energized by like going to the gym.

Has anyone else experienced this? Could it be affecting my night time sleep?

I’m heading in for a sleep study tonight followed by MSLT tomorrow. I’m worried I won’t meet the diagnostic criteria for N2 or IH because it’s a military clinic and I’ve seen their NIH results showing they diagnose at half the civilian rate. Has anyone not met the criteria but still got a diagnosis with treatment? TIA

Recently had a spill while traveling and I’m trying to calculate how much medication was lost. I measured the bottle so I know how much medication I have left, but I can’t remember how many nights of medication I should have past the earliest refill date. I know the refill date is typical a few days before you run out of medication, but I forget the exact number. If anyone knows lmk, I wanna have all the info before I call the pharmacy to report the spill (especially since I may need to move my schedule around to accommodate an early shipment).

Have you ever had those days where you’re so egregiously tired you can’t tell left from right and it feels like you just got slammed through a concrete wall and can’t think right and you’re just kinda stumbling through life?

fantastic!

how do you survive?

because I can barely get the coordination to get food for myself much less clean anything or get work done. sometimes my dumbass just be tripping on air and falling out of bed and it makes me wonder how our ancestors survived without walking off cliffs or something stupid 🫣

and yes I ask for help sometimes but my community isn’t that big and I live alone. obviously for safety I don’t drive when I feel this way but if narcolepsy has killed anyone even without driving, I would believe it because the brain can get really mushy after being tired too long lol