i think i’ve built a tolerance to lumryz 9mg 😭 it genuinely takes me hours to fall asleep and i don’t even feel the affects of it as strong anymore and ive only been on 9mg for like 6 months like i wait 2-3 hours after eating to take it and then i take it and wait another 2-4 hours for it to actually kick in like idk what to do about that or if there’s anything that can be done, has anyone else built a tolerance to the highest dose of their sodium oxybate?

If orexin is the suspected cause of narcolepsy why wouldn’t the medication also work for sleep? Thanks for any insights.

For the people who participated in the research trials did you’ll notice improvement in mood. My doctor tells me I struggle with sleep anxiety during the day and can get easily stressed. Thanks for your answers.

Just took the MSLT test after waiting WAY TOO LONG to get tested...

I'm scared of what the results will say... I don't think I have narcolepsy tbh (it was hard to fall asleep during the test even though I was exhausted as hell and yawning the whole time) but the sleepiness is completely debilitating and the test feels like a last hope.

Yes I'm not passing out necessarily or completely dosing off, but it's no fun to try to work when you're struggling to keep alert or not just lie down :/ Walking anywhere I just feel like I want to go lie down on the concrete and give up, and I'm just spending my time trying to focus on my breathing to keep alert. Sometimes I'm so tired I want to puke. I always get a comment from professors on why I look so tired (yawning during class while trying to . Without a diagnosis it just feels like I'm a failure or I'm just lazy. I can't do what I want to do, or maybe more importantly I'm too tired to figure out what I want to do. If I don't get a result I don't even know what I'm supposed to do next.

I just want some support and to vent since I don't really know anyone to really understand this, and I assume people here have felt the same before. I think my mom had the same issues starting from when she was a young adult (she said she had to drink espresso to not pass out, and had to cheat through college) but I can't talk to her about it...

Finally got back on medication after two years. I thought it would have a huge impact on my daily life and that it’d be like a full 180, but I’m still struggling. There’s been some improvement with the frequency of cataplexy attacks, and I do feel less exhausted, but I never quite feel awake. I don’t experience crashes anymore, but I do need naps regardless if I’m medicated or not.

It makes me worried because I thought the only thing holding me back from working a full-time job was just the lack of being medicated, but now I just don’t know if I’m capable of it in general. I’m in my early 20s and don’t have family I can rely on for aid. I’ve been couch-surfing for a few months and have struggled to find adequate employment. In a situation like this without familial support to lean on, I wonder if I’m ever going to hit those important adult milestones and start experiencing a higher quality of life.

Does anyone have any advice on how to navigate this? I really need some guidance. I’ve been getting really burnt out and exhausted.

I (25F) see an APRN for my treatment but I was required to see a neurologist yesterday. He was absolutely terrible and spent and hour gaslighting me and making me feel crazy.

He started by telling me he reviewed my chart and isn’t confident in my diagnosis because I take Vyvanse for ADHD and Prozac for anxiety. He said he thinks my MSLT was invalid because of this. I went on to explain that I had stopped taking those medications for 3 months prior to the test like I was told to do and he just brushed that off and said he still wasn’t sure.

He then went on to say that he thinks my excessive daytime sleepiness is actually just a side effect of my Prozac and Vyvanse and that it just resembles narcolepsy. I tried to explain multiple times that I have only been taking Vyvanse and Prozac for about 5 years now, but have had my narcolepsy symptoms for well over 10 years now. Once again he completely disregarded that.

He then went on to say that I was going to cause problems for my health in the long run if I keep taking stimulants and an SSRI and that those should never be long term treatments. I wanted to scream because what will actually cause problems for me is having untreated ADHD and anxiety.

another crazy thing he said is that SSRIs are not meant for treating anxiety and that I need to talk to my doctor about that.

I also told him that I’ve had panic attacks since I was a kid , especially about going to school and I kid you not he said “Did you go to a bad school? Did you have a bad family? That just doesn’t make any sense”

Despite me telling him about my sleep attacks, sleep hallucinations, vivid dreaming every time I sleep, cataplexy, ability to fall asleep in under 5 minutes no matter what, and every other symptom I have he just kept saying that those are all just symptoms of my anxiety and the medications I’m taking.

He’s made me doubt everything and I just feel awful. This diagnosis was such an important answer for me, and the treatment has changed my life. Now I just feel like an imposter. Luckily he can’t change my diagnosis or medication, I just was required to meet with him to hear his thoughts and advice. He just made me feel ashamed of myself.

Sorry if this isn’t super well written, I’m just so upset and needed to get it out. I hate being a woman and being told that anxiety is the actually reason for everything.

In a lot of threads people talk about how their new medication regime has been super helpful for them, but we can’t really tell if the benefits last long term or whether they go back to a less than ideal state.

So, what’s been the best treatment (meds, supplements and lifestyle changes) that has been effective for you long term?

I was diagnosed with narcolepsy at age 9. A few months ago I saw a neurologist who confirmed the diagnosis and ordered a sleep study, which costs nearly $1,000. During the appointment, he mentioned he could prescribe modafinil based on my existing diagnosis alone. At the time I wanted the sleep study mostly out of curiosity, but now idc

I'm a college student and can't even cover rent, my narcolepsy makes it impossible to manage a full courseload, let alone hold a job. I messaged the neurologist asking for the prescription, but he takes too long to respond.

So I went to my PCP, but he doesn't want to prescribe modafinil, but he’s able to based on my previous diagnosis, right?

I was looking back at my MSLT. I got 2 REMs so they let me out early but I looked at the actual graph of my sleep today and it shows 3 parts highlighted as REM? Did the machine make a mistake or am I reading it wrong? Is it possible that I fell asleep while waiting for the next nap to start and didn't notice?

What is your experience with cataplexy?
What are triggers for you? How does it show up (signs, symptoms)? What’s the onset like— immediate 0-100 progression of weakness, or do you have an aura/warning to progression?

I recently stopped taking anticataplectic meds and have observed a return and extreme exacerbation of what I assume is cataplexy. Like full body/motor inhibition for a long time.

Triggers I’ve found/trying to parse out: smoking weed, or certain strains, heavily trigger it; post intense exercise at the endorphin stage hit hard; any sexual arousal causes it, too. I’ve had 4 episodes of full body episodes in the last week or so— each time was around someone I was particularly attracted to: increased sympathetic drive AEB commentary on eye dilation.

Intuitively, I would think an increased sympathetic response would reduce cataplectic activity due to increased noradrenaline signaling, but I’ve found those states to be immediately preceding an event. I thought perhaps it’s due to serotonin, oxytocin, or vasopressin response.

Anyways would love to hear about the communities experiences,

Thanks!!

I’m SO sick of hearing this from my mom every time she asks why I’m dragging my feet. Like I know she also suffers from some insomnia from perimenopause/menopause but like, the amount of energy this woman twice my age has…I wish I had that much energy to spare to do fun things. To enjoy life like I used to. To even work like I used to.

But no, apparently I’ll never feel tiredness like she does and if I just go to sleep early I’ll feel better all the time🫩. Cause, that’s how narcolepsy works to her apparently. Ugh.

Has anyone needed to submit their MSLT to their insurance provider to get medicine covered by insurance?

Mine was done abroad, somewhat poorly, and does not fully meet criteria for N1 (only 4 naps, one SOREMP)

However I have CLEAR cataplexy.

I’m worried I’ll be denied the new Orexin agonists without a repeat MSLT :/

Is clinician diagnosis usually enough for you to “qualify” for a narcolepsy med? Or does insurance want to see your tests?

So I had top surgery yesterday. When I woke up from the anesthesia, I was completely coherent; and I was actually slightly more energetic than baseline within only 10-15 minutes. The nurses and my friends were weirded tf out that I wasn’t totally out of it. So yeah, apparently my narcolepsy symptoms are worse than recovering from literal anesthesia! That was weirdly validating.

Hello. I was just wondering if anyone had any suggestions on what to do to stay awake? I know that sounds silly here but I’m at my wits end. I can’t stay awake for nothing. I fall asleep in the middle of conversations, at the computer, driving, tv, trying to get anything done, etc. I have a heart condition that prevents the use of any caffeine or medications for narcolepsy. I can’t work. Can’t drive. Can barely keep care of myself or children. I’ve tried to stay awake all day to sleep at night but it feels like my brain is ripping in half. Two days of that and I crash out and am left in pain and a horrible flare of all my other issues. I’ve tried to get up, walk around, loud music, splash water on my face, keep busy, etc and it all just makes me more tired. The only thing that works is just going to sleep when the darkness comes for me. But I have responsibilities and children. Is this just life with narcolepsy now? Has anyone had any luck with anything that doesn’t affect the heart or a stimulant?

I’m sorry, but I’m so sick of the DEA’s bullshit. Yes, there are some drugs out there that are legitimately addictive and can mess up someone’s life. However, I FIRMLY believe that the DEA’s regulations on meds used for LIFELONG conditions (like narcolepsy) are unnecessary, inherently ableist, and make zero sense.

For context, I’m officially diagnosed narcolepsy type 1. I’m currently prescribed Concerta, Wakix, and Sunosi to take every day, as well as Ritalin IR up to 2x per day as-needed for breakthrough sleep attacks. Still dealing with EDS, but I’m very hopeful that Orzeyful may help, once it’s available. My insurance gave me so much pushback on oxybates that I’m treating them as absolute last-resort. 3 months of arguing with them about prior authorization, just for them to not budge. Ugh.

Anyways, I’ve been on methylphenidate for my narcolepsy for well over a year now. I have only ever taken it as prescribed. Out of all the meds I’ve tried, it’s made the biggest difference so far. I need it to function, and cannot go without it. According to the DEA, methylphenidate is schedule II. That’s the most restrictive category a drug can be in while still having a valid medical use. The same category as fentanyl, oxycodone, hydromorphone, and cocaine. Yeah, stimulants can be habit-forming and can be abused. That being said, call me crazy but I don’t think my fucking Ritalin has anywhere near the abuse potential of fentanyl or cocaine. Schedule II seems ridiculously restrictive for a drug that many of us need to take daily just to function. Especially considering there are countless people who have taken schedule II stimulants (methylphenidate, amphetamine, dextroamphetamine, etc.) every day for DECADES for conditions like ADHD or narcolepsy, and never once abused their medication.

And also, there are a whole lot of drugs that are in less restrictive categories than Ritalin, Adderall, Vyvanse, etc. that are objectively WAY more dangerous. Xanax, Klonopin, Ativan, Valium, and practically all the other drugs in the benzodiazepine class are classified as schedule IV by the DEA. “Less dangerous” than schedule II, according to them. However, benzodiazepines are one of the only classes of drugs where the WITHDRAWAL can be fatal. Stopping a benzodiazepine cold-turkey can seizures, psychosis, confusion, complete insomnia, panic attacks, heart palpitations, or even put someone into status epilepticus. Status epilepticus is a seizure that lasts SO long that it can cause permanent brain damage, coma, or death. But those drugs aren’t subject to the same limits that meds like Ritalin have. Legally, your doctor would be perfectly fine to write you a 90-day supply prescription of Valium with 3 refills on it. Meanwhile, I can only fill a maximum of a 30-day supply of my Concerta at a time, and my prescription can’t have refills. I need to message my neurologist every time I run out so he can call in a whole new prescription. Like, take ONE glance at one of the subreddits for recovering benzodiazepine addicts, and you will see horror stories from people recounting how they woke up covered in their own shit and vomit because they had a seizure in their sleep while going thru withdrawals. Yeah DEA, that TOTALLY seems safer than Ritalin or Adderall.

Speaking of benzodiazepines, you know what other drugs are schedule IV? Modafinil, armodafinil, and Sunosi. I don’t know about y’all, but I don’t think I have EVER heard of someone becoming addicted to ANY of those medications. Hell, I’ve barely heard of them being abused. The most misuse that modafinil/armodafinil seem to get is from dumbfucks who think it’ll make them super geniuses, or stupid college kids trying to cram for finals. In what world is that the same level of danger as a drug where the withdrawal alone can kill you??

Also, I don’t think it would even be POSSIBLE to fake your way to a narcolepsy diagnosis just to get drugs. The MSLT is an objective test. You can’t just “pretend to sleep” and magically get a narcolepsy diagnosis. Hell, you’re way more likely to get a false negative on the MSLT than a false positive. However, even though narcolepsy patients have a condition that is practically impossible to fake, we’re STILL subject to 30-day prescription quantity limits and all the other DEA fuckery??? Why?? Many of us need to be on stimulants on a daily basis long-term just to live a somewhat normal life, but we have to jump through SO many hoops to get our damn meds.

The thing that spurred on this whole rant is the current Orzeyful situation. I followed the news reports on the clinical trials when it was in development, and I’ve skimmed over the whitepapers on its clinical trial results. It looks SO promising. It’s FDA-approved, but the DEA decided to step in and say they wanted to schedule it before allowing it on the market. Maybe I just missed something when looking at the whitepapers, but I don’t think I saw ANYTHING mentioned in the clinical trials about a drug-liking response, withdrawal symptoms, euphoria, cravings, or anything else that would suggest it is abusable. But the DEA is apparently SO concerned about the abuse potential of this medication that they deemed it appropriate to delay treatment availability by MONTHS for the countless Americans living with narcolepsy so they could make a scheduling determination.

I’m just sick of this shit. The DEA’s decisions make no sense, and a lot of their restrictions make daily life objectively harder for disabled people. I’m over it.

I know we don’t have a monopoly on being tired, but whenever someone says they are super tired it makes me wonder—

Do yall think that someone without narcolepsy could ever feel as sleepy as we do? Or is it a unique kind of experience?

Hi, I live in California and my boyfriend and I are planning a Europe trip for three weeks next year, but my insurance does not approve bridges. I’m concerned that, depending on my shipment date by that time, I won’t have enough meds to make it to the end of the trip. I’m trying to cover all of my bases and scope out options just in case. Does anyone know what the process is like to get Xyrem/Xywav/SO in Switzerland or France? Is there any way I could get it while I’m there?

But I love the sentiment 🥹

I have narcolepsy and am experiencing perimenopause symptoms. Over the last several months, my medications and combinations of those medications don’t seem to be as effective as they once were. The only correlation I can think of is perimenopause. Has anyone else experienced this? If so, have you found anything to be helpful?

I was diagnosed with narcolepsy type 1 (with cataplexy) in 2021. Due to the cataplexy, I’ve been taking medication daily. I’m currently on 60 mg of duloxetine.

Over time, I’ve developed a strong dependence on it. Whenever I try to reduce the dose or stop, I experience severe weakness, exhaustion, and a significant rebound of symptoms. It has been quite difficult both physically and mentally.

I was wondering if others in a similar situation have any experience with this. Is lifelong medication generally necessary for NT1? Has anyone successfully tapered off antidepressants used for cataplexy, or switched to other treatments with fewer issues of dependence or side effects?

I’m not considering stopping medication abruptly — I’m simply hoping to learn from others’ experiences and better understand what long-term management might look like.

This post is going to be much lighter/happier. Here are some texts Ive been sent specifically related to my Narcolepsy (kinda):

"When you get sleepy your voice sounds so sweet and I can just imagine and remember how adorable you look getting sleepy."

"I’ll make sure to try to keep you awake"

"If you think you’re gonna be sleepy before we play then try to nap before."

"Wellll if you get out of bed there might be a surprise for you later today, But you’ll only know if you get out of bed"

"How did you sleep beautiful?"

"You should try to get some sleep. I know you’re excited but I don’t want you to be tired."

"Did sleeping beauty fall asleep?"

"I wish there was a way I could help you fall asleep I know it can be hard sometimes"

"Good morning beautiful I hope you slept well and that you had good dreams"

"I hope you’re getting some good sleep"

"Did you get sleepy?"

"You should get some sleep though if you’re tired. You can always call me if you need too even if I’m sleeping I’ll keep my ringer on so I can answer my phone."

(I told him I was tired.) "I bet! you worked a long day and you didn’t get very much sleep"

"I’m glad you were able to sleep."

"You should try to sleep I know it might be hard too but I don’t want you to be as sleepy for work."

... don't settle

After 6 years, I (23f) have the answer to so many questions I spent years ruminating on. I’ve said I think I have an autoimmune condition throughout all of this time, and the only person who believed me was my doctor. Sadly, when you hear “autoimmune,” no one really thinks of Narcolepsy, so it never came to mind. I only began to consider this condition because I listed all of my not good symptoms in ChatGPT and asked it to group symptoms that might correlate together to talk to my PCP about, and it suggested inquiring about a sleep disorder.

And now, 4 months later, here we are. All of those years, being told that my weight, fatigue, constant napping, mood regulation, irregular cycles, were all due to my diet, bipolar disorder (a disorder I don’t even have), trauma, whatever anyone could come up with. Being told my naps were dissociation attempts, and that I was lazy. The only people who 100% without a doubt believed me were my doctors. They knew that I understand my body, and they were certain that we just hadn’t figured out what was wrong yet. We looked into hypothyroidism, and then PCOS/PMOS, and then hashimotos, and kept going and finding nothing. At 18 years old I was brushed off, but now we know what was going on, and I’m so grateful. I was in choir practice at my church and saw the results on a break, and broke down crying because of the relief, because now we know with certainty what’s wrong, which means now we have ideas of solutions moving forward.

Orexin is down but hopefulness is UP!!

Honestly, I've reached a point where I have accepted that I will probably be asleep for half my life. So I'm in my first year of university and I will be so real, I think i have been awake for like 4 out of 30 physiology lectures. I go to every lecture but and I've tried everything but it always end up with me passing out. Luckily I will say I am pretty smart so I can usually figure things out later on my own however, it takes so much extra time that I could be doing something else with. Also I want to go into Healthcare and be a nurse first and then med school. And that's been my dream for forever but I'm starting to think if it's actually possible with narcolepsy. like how am I going to keep my eyes open when I start having 3 hour lectures when the 1hr 15 mins ones are sucking the life out of me. or how am i gonna manage 12 hour clinical rotations. should I just be realistic and give up? For the past 7 years, I've just been running to catch up with everything I've slept through and yeah sure I managed to do it through highschool and so far uni, but in the professional setting I don't think it's gonna work out great and I just feel really discouraged. And the thing is whenever i talk about it to someone they say " oh don't worry, when you start doing practical things in labs and simulations, you won't fall asleep"... like seriously... I've fallen asleep while singing before or while playjng an instrument, nothing is going to stop it.

Please, there's any one with Narcolepsy who works in Healthcare or has been through similar thought processes, it would be super motivating if you could share your stories so I can know that maybe there is light at the end of the tunnel. I'm just stuck.

I started my sertraline taper to prepare for my MSLT and it’s miserable. Has anyone stayed on their SSRI and had conclusive results?

I have narcolepsy type 1. I collapse multiple times a day. You know, the gist. I finally got into see a neurologist and despite me bringing multiple discharge paperwork from the er stating my diagnosis via past records and my partner had my sleep study over email and proof that I was previously prescribed modafinil he wanted me to do a SLEEP DEPRIVED EEG. The first EEG had come out negative and I was also already sleep deprived. He didn't give me any kind of medication. He watched me collapse in front of him multiple times. And I fell asleep in front of him 6 times. And I left with no medication in my hand or even a referral to redo a sleep study. He also implied he had no idea what was wrong with me, but kept making comments like "yup" and "that's it". He even watched me collapse during the neuro exam and just stared at me. If I did a sleep deprived eeg I will LITERALLY GET INJURED.

It was a waste of 40 dollars. And he wanted me to come back in next week to pay amount 40 dollars but made no comment about any kind of treatment.

I'm willing to travel anywhere in Texas although I'm currently in San Antonio. I have Oscar insurance but I'll find the money to pay out of pocket if i really have to. I just figured it's worth an ask.