I've been given pamphlets and papers on "sleep hygiene" before and it feels like a cruel joke. It basically can be summarized as "just go to sleep earlier bro" and "dont drink coffee at night bro" as if we have not tried simply going to sleep earlier or not drinking coffee at night. It feels like one of those clickbait articles about "one small hack to fix X problem"

Do these doctors actually think we would be going to their practices for narcolepsy if "just going to sleep earlier bro" worked? We are clearly not normal patients and we have a problem that is beyond leaving our fucking TV on at night or some stupid shit that can be solved by an "easy hack" like that

It's like telling someone with OCD to "just stop doing the ritual bro" or someone with a broken leg to "just stand up and walk bro"

Hi I’m wondering how old all of you were when you were first diagnosed with Narcolepsy? I feel like I had it my whole teenage years, but couldn’t get in with a sleep doctor until I was 23 due to blaming things like “growth spurts” or “iron deficiency” etc. for being so tired

If you’re comfortable, I’m just curious if there’s a strong correlation between any disorders.

Did anyone else feel like their sleep study was medically supervised torture? I just finished my sleep study and that was harder than I thought it would be. The tech said I slept in 4/5 naps so now I'm just waiting on results. Suspected type 1 narcolepsy with cataplexy.

I laid down for the first nap and had to ask the tech to wait because I had to go throw up. I can't remember the last time I threw up. They had me go to bed at 9 and woke me up at 5:30 in the morning which is way different than my usual schedule. I was so nauseous and just felt like I had a horrible hangover all day.

Luckily I was still able to go through with the test. I brought all these activities with me and didn't pick up a single one. I did not expect to feel so physically ill that whole time. I know a big part of it has to be caffeine withdrawals plus exhaustion.

So advice for people going into their MSLT:

• Maybe pack your own snacks if you are a picky eater or prone to nausea. Hospital food was difficult to stomach with how I felt. I needed my safe foods.

• If you have mid-long hair I wore normal pigtail braids (not french braids) The tech commented on how this was the perfect hairstyle because she could access my head my hair didn't tangle in the wires.

• Plan phone calls with loved ones. This was one of the few things that kept me awake between naps. I couldn't even look at my phone with how much my head hurt.

• If you are allowed, pack over the counter pain meds if you have a caffeine dependence.

• If you can afford it plan a generous amount of recovery time after the test. It is really exhausting despite sleeping so much. The whole process is really taxing.

Good luck to everyone waiting on their MSLT!!!

After talking to so many doctors over so many years, I finally had a psychiatrist suggest today that I may have narcolepsy. I now have a referral for a sleep specialist and sleep study. I drove home, nearly crying happy tears, and immediately took a 2 hour nap. 😂

I was prescribed adderall a few years ago for ADHD and don’t know how I ever survived without it. I spent all of my teenage years and now most of my early 20s feeling like I’m crazy. Being told it’s just anxiety or my hormones making me so tired. So tired I have to slap myself in the face over and over driving 30/45 minutes. So tired I would fall asleep in multiple classes in high school everyday. So tired I can fall asleep sitting up, laying on a hard floor, on my stomach in the south Florida sun for 3 hours (worst burn of my life…). So tired I can take a nap easily on adderall. So tired and never feeling rested even immediately after waking up.

I’ve had all the blood tests run and they come back normal. I brought it up to my PCP once and they said “well you don’t randomly fall asleep while you’re walking or anything, do you?” It’s wild that a doctor would think that’s what qualifies whether you have narcolepsy or not.

How many years did you deal with narcolepsy before someone finally suggested you may have it?

I’ve been diagnosed with narcolepsy for years. I’ve done treatment for it, I’ve been medicated, I was diagnosed with cataplexy and have dealt with cataplexy episodes.

I had to do a repeat day and night sleep study for Xyrem and the results came back that I only have hypersomnia and they’re not sure why I have excessive daytime sleepiness.

I don’t know what to do with myself. This feels so unfair and I don’t understand how this could have happened. Has anyone else dealt with this?

Edit: I just had my follow-up and my sleep specialist says that there’s “no evidence of any sleep disorders whatsoever” and he didn’t care that there was construction outside as well as bright light during the daytime test. I mentioned the cataplexy and excessive daytime sleepiness and he said “if you were actually tired a bomb could go off and you’d sleep through it.” He’s refusing to prescribe sleep medication or any daytime medications.

He looked at my medication and acknowledged that one medication impacts REM and that “maybe we can repeat the tests later.”

He said that other neurological issues could cause narcolepsy-like symptoms so he’s sending me to a neurologist.

Well, today is finally the day! I've been waiting for this since last year when my psychiatrist said it wasn't normal to fall asleep after 3 Celsius energy drinks and 35mg of Vivance. Weird! Oh well, just turned 30 so here's to hopefully a better decade.

Feel free to leave any messages or questions as it will give me something to do tomorrow!

Just kinda curious to hear everyone’s stories :)

I'm curious how long it took others to get a proper diagnosis. I know someone who had this problem for 30 years and was misdiagnosed before her psychiatrist connected the dots. Please share your experience.

I did my MSLT recently, and it was a horrible experience. I still don't know the results, and honestly, I'm not worried, whether they're negative or positive. The issue is that during the test, I felt an overwhelming and nearly impossible-to-control sleepiness; if it weren't for my companion, I would definitely have fallen asleep. I could barely use my phone, have a conversation, or walk around the clinic to try to stay awake; I even had hallucinations due to sleep deprivation.

I feel completely incapable of doing the exam again and I'm not even sure if I managed to sleep enough times for a proper evaluation.

I'm very frustrated.

Has anything similar happened to any of you?

I hate this because my baseline is 4-5 depending on what's going on. With meds, MAYBE 2-3. The sleep lab kept asking me what my sleep score was for this when I had to redo my mslt 💀

I have been tested for everything under the sun at this point. What else am I supposed to do? I am taking adderall for energy, and it helps, but not nearly enough to combat this.

What else do I do? What am I missing?

I had my period during my PSG and MSLT. During the overnight I fell asleep within five minutes of the lights going out. But an hour later I woke up with really bad period cramps and couldn't get back to sleep. I was in agony so I asked to go to the bathroom and I took a THC/CBD gummy that I had in my bathroom bag, which always does the trick for my period pain. I finally fell back asleep. The next morning I woke up in horrible pain again. I took another gummy, which only sort of helped. I felt like I could barely sleep during the naps from the pain and kept jolting awake.

Got the results. My average sleep latency was 6.1 minutes on the naps, but the PA at the clinic said it wasn't significant bc I didn't get 6 hours during my PSG so I was sleep deprived. Apparently I did not hit REM at all during any part of the test including the overnight, which is weird because dreams are my whole problem. I have weird, looping dreams every night and hypnogogic hallucinations around sleep. I experience cataplexy. I also have two relatives with diagnosed narcolepsy type 1.

I am willing to believe I don't have narcolepsy, but I just learned that weed suppresses REM, which makes sense but I never knew. Could this have messed with my results? I vape daily, I've found that it helps me stay awake and alert during the day and hallucinate less. It also helps me not have such horrible dreams at night. I'd been told to go off my SSRIs and stimulants which I did, but never anything about THC.

I still have to go in to talk about my results but I saw it on my portal. I'm so confused. I was so convinced it was narcolepsy. I get terrible sleep paralysis almost every time I nap or go to bed and hypnagogic hallucinations (thought I didn't know there was a name for them until today lol). I still have yet to find an alarm that can wake me up in the morning. If I don't take my vyvanse (for my adhd) I will literally only be awake for maybe six hours. And I keep falling asleep at concerts i've spent a lot of money on because thats what happens when I get excited :(. It would be lying to say I'm not at least a little bit disappointed, idiopathic hypersomnia seems like such a non-diagnosis. It took me so long to get this sleep study done and scheduled and I was really hoping I would be able to get some help from it because my life is literally falling apart right now. I'm so behind in school because I sleep ALL THE TIME and I never have enough energy to do anything. Sometimes my vyvanse isnt even enough to keep me awake. This all started around me turning 19.

Yesterday I had the MSLT done and I’m almost 100% sure that I never napped, but I know my PSG will show that I enter REM very quickly after falling asleep.

Has anyone else actually stayed awake for their naps but still received a narcolepsy diagnosis? I’ve read posts of people who THOUGHT they hadn’t fallen asleep but did. I want to hear from the people who DID NOT fall asleep during their MSLT.

In July-ish of 2022 I had an onset of symptoms including fatigue, daily headaches, GI issues (mainly bloating).

I first saw a doctor in March of 2023, and since then I have had “extensive” testing. Bloodwork, imaging, a standard sleep study. Everything is normal. I’ve seen every gen/family medicine doctor available to me, and they are at this point refusing any further testing or referrals.

I saw an internal medicine doctor in August, who was not very helpful, all she did was refer me back to specialists I’ve already seen. This included sleep medicine.

After my sleep study last December came back incredibly normal, no abnormalities or apnea, I was told all sleep medicine could offer was an MSLT. When I saw sleep medicine again in Sept or Oct of this year, they said the same. Being doctors were not willing to pursue anything else with me, I agreed to schedule it.

But looking into it, it seems that an MSLT really only tests for narcolepsy, and I honestly don’t believe that I could be narcoleptic. Looking at common symptoms, it just doesn’t seem fitting. I don’t have sleep attacks or paralysis, I don’t have cataplexy, I don’t have hallucinations or restless sleep. I wouldn’t even say that I have “extreme” daytime sleepiness. I just have this nagging fatigue, all day every day, along with my other symptoms.

I’m trying to figure out if it is worth wasting my time, my PTO, and provider’s time for this MSLT. The sleep medicine providers weren’t really pushing for it like it was necessary, they didn’t even discuss narcolepsy as a possibility with me. They just told me it’s the only thing they had to offer in sleep medicine, and I’m feeling forced to do it considering DRs aren’t giving me any other options.

My new sleep doctor told me that he suspects I have IH as opposed to N1/N2, because I do not feel refreshed after naps. I’m just curious what everyone’s experience is. Does your diagnosis match that perception?

I had a sleep latency of 6-7 minutes. Fell asleep in 4/5 of the naps and had rem in 2 of them.

During the over night sleep study I got 6h:20 minutes of sleeps.

The night before I got 4:40 hours of sleep. And the rest of the week prior the study I averaged 7 hours of sleep.

Do you think it’s worth doing the sleep study again? Don’t want to me misdiagnosed. I am worried that prior night of sleep affected results. Doctor says she still feels confident in diagnosis but I’d need to pay out of pocket for another sleep test if I want it.

Wondering how many others also have a confirmed diagnosis of Raynaud’s? Mine is usually only bad in the winter but it’s been getting so bad that it wakes me up several times at night. Ugh. And it’s definitely a different experience than just the clumsiness /dropping things that I associate with narcolepsy. It’s frustrating to have 2 reasons that my hands don’t work so well! I’m wondering if this is common for others too?

At what age did your symptoms start? What age/what made you finally get diagnosed?

I posted here two weeks ago looking for support are reassurance and I'm back lol. I've read quite a few posts from people getting their MSLT saying they don't think they fell asleep, and some people did while others didn't. I'm two naps in and keep drifting off and then feeling like I'm being jolted awake by anxiety. The first nap lasted 22 minutes, the second was 21 minutes and 40 seconds (I'm keeping track on my watch). I asked the sleep tech what happens if I'm too anxious to sleep and she said she'd make a note for the doctor and that it was ok. Does anyone have any insight about whether or not I'm actually sleeping lol. Does the 22 minutes mean something, or was she just 2 minutes late to wake me up? They've been pretty exact on timing for everything else but I fear I'm being too hopeful.

just got suggested i might be tired since im not contributing to society (stay at home mom) and asked do i have a family history of carpal tunnel because you know, cataplexy is only falling over while you laugh. and definitely not dropping a lot of things.

I got my MSLT results back and they said everything is normal. I don't feel like everything is normal. Is it normal to sleep for 4 or your naps? Is it normal to fall asleep under 2 minutes for one? Is it normal to enter REM sleep in under 10 minutes? They basically told me my sleep issues are my own fault when I've tried everything in the last 25 years to make my sleep normal. I guess I'll just be tired forever.

EDIT: thanks everyone for your super kind words and advice! I am scheduled for the 2 part studies end of May. Wish me luck!

Hi all!

I saw a sleep disorder specialist today and she strongly suspects I have Narcolepsy! I am honestly so shocked by this and wanted to hear input from people who have been officially diagnosed. I am admittedly uninformed on the topic and always pictured narcolepsy as the stereotypical picture of a person who suffers from sleep attacks and cannot control them. My symptoms are below: -always exhausted, my whole life, can sleep 10+ hours and still be tired -hallucinations if woken up suddenly, my entire life (usually I see spiders) -have sleep walked in the past, had a night terror, no sleep paralysis that I’ve experienced though. -the afternoons after lunch and dinner I am so sleepy. I can force myself to stay awake but it’s hard depending on certain factors. -the sleep specialist described cataplexy and I’m not sure I have it. Sometimes when having a big laugh with friends, my jaw will feel kind of funny/limp or my legs will feel boneless in a way, but I’ve never fallen down or anything? Does this sound like cataplexy? It’s very subtle.

My sleep disorder specialist wants to try 2 sleep studies. I had no idea narcolepsy was a spectrum, since I never fall asleep uncontrollably, per se. But sometimes it is definitely a fight. Anyway, would love to hear from you all about your experience with it.

MSLT definitely positive. I remember being exceedingly tired that day because I got woken up at 6am instead of my usual 9am. All of my REM happens in the later part of my sleep (very delayed REM). My only symptom is all day fatigue. I don't get sleep attacks, no sleep paralysis or hallucinations, no automatic behaviors or insomnia. My sleep schedule since I did my sleep study is now immaculate and my body keeps the schedule flawlessly. I am unrefreshed in the morning and struggle with sleep inertia though. My ESS is always 4 (yes, four). I don't doze off or get more drowsy on the computer, watching tv, or driving.

I know the only symptom required is EDS. But is it possible to have just fatigue? I've self monitored and reflected on past behavior, asked those around me, and my interpretation is the same as reflected above. I identify fatigue as low energy, whereas sleepiness is "could I sleep given the opportunity".

ETA: my test was done in October and already discussed with the doctor that did the test (a general pulmonologist), and a secondary doctor (narcolepsy specific). The second doctor is very surprised about the presentation of the MSLT given how my symptoms present day to day.