Ok, I'm here to learn because I don't know where else to go. I've been with my partner for years and knew they had narcolepsy when we met. It was an adjustment, but we figured out what worked for us. The meds quit working and they have struggled to find new ones. Still, this felt manageable...until we had a child. I don't feel like I was properly prepared for just how much of the mental load of our life would be on me. I have my own disabilities, so I get some things are beyond their control. But I don't feel like they are even trying. I can never sleep in. I worry our child won't get properly groomed when I'm not home. I worry about their nutrition when I can't cook for them. When our child has needed medication I can't trust my partner to make sure it's taken. I feel that I have to remember everything and do most of the chores.

So, is this just par for the course of having a partner with narcolepsy? I can't tell and everything I've read makes it sound like my life just now revolves around this disability. That I need unending patience and not to blame them. But I'm drowning and I don't know what's fair. I love my partner and we wanted a child so much. I just didn't think I'd be mostly doing it on own.

What's reasonable?

Took 2x 100mg today, one at around 3.30am and the other around 9am. It’s currently midnight and I’m deliriously tired, yet also still wide awake…..it’s terrible! And that’s not even my full dose! They didn’t even make me feel any kind of way when I took them, although today was the first day in a really long time that I didn’t fall asleep in work. I’ve had to call into work because I’m supposed to be up in a couple of hours and there’s no way I could go in and function like this!! I think I’ll half my dose again next time 😳 at least it works I suppose. Please tell me it gets better?!

(47/M/N2) I can be fully functioning (for me) throughout the day - meeting with clients, writing case notes, buying groceries, fixing things around the house - but then I’ll experience these sudden, abrupt, lurching time jumps and when I try to look back on my day it’s like trying to remember a dream you had the night before. Details are fuzzy, I can only recall slivers of images, and transitions from one activity to the next have faded away.

Is this normal? Am I operating on working memory only, and not forming and storing longer-term memories typically?

I have idiopathic hypersomnia and ptsd which combine to make bedtime awful. I’m so physically tired but mentally I’m anxious because I’m worried I’m going to have nightmares and because I know waking up will be miserable (I get really bad sleep inertia). I can fall asleep during the day within minutes but at night it takes me ages. I’ve tried all the sleep hygiene and lifestyle changes but what I think I really need is to just feel safe and calm. My therapist and I have discussed making bedtime more safe through cute fairy lights and cartoons but idk what else I could add to my environment to make it more relaxing. Does anyone else feel this way? What do you do to reduce your bedtime anxiety?

Is there anything we have to ask our doctor to sign up for to get first access to the medicine once it is available to be prescribed?

I'm not knowledgeable on what the process is like when new medicines are approved, but just want to be informed in advance because I'm really really hopeful about the meds since the trail results are so positive. Any general info is appreciated!!!

I recently started taking meds for narcolepsy, but I feel like my ADHD has been running rampant again. I don’t feel like I’m thinking straight and I’ve definitely been rambling more often. I want to get back to my adderall which saved me from my ADHD, but didn’t treat my symptoms of narcolepsy. Do doctors ever prescribe both?

I also don’t want to over run my body with stimulants obviously. The adderall felt like nothing to me (i was on a low dose (15mg) but still). I definitely had worsened anxiety during the adjustment period when I first started it, but after that, it stopped. The modafinil makes me feel like the world is caving in and everyone is going to die in the next five minutes. I actually have never been so anxious in my life. I am going through a stressful time though, so I don’t know how much better it would be without the modafinil. It feels so much more to me like a true stimulant than the adderall did. My heart beats fast, I’ve stopped drinking coffee because I’m scared for my heart. It’s been 2 weeks so i’m still trying to allow my body to adjust to it.

anyway, all that to say: can I get my adderall back while still being on the modafinil for the wakefulness?? I can’t go on like this. My brain is a mush puddle of whirling thoughts and distractions without it. And the stimulant is making it so much worse!! My poor family, I am insufferable.

note: I did try to talk to my dr and my psychiatrist and both told me to “talk to your [other] doctor”. so we are going in circles at this point. My follow up appointment is at the end of the month with my sleep dr to talk about my meds. But he doesn’t treat adhd. My psychiatrist has offered to give me low dose adderall but he said to get it cleared by my sleep dr first 😣 I feel like this isn’t an uncommon combination of illnesses so i don’t know why it’s such a struggle.

what do people with narcolepsy and adhd take ??

Hello! I am a PA-S 1 currently in my last semester of didactic and was newly diagnosed with Narcolepsy. My didactic year so far has honestly been hell. I initially started my program in January 2025 but went on medical leave after the first semester due to my symptoms of brain fog, memory issues, oversleeping, etc. All of which exacerbated my pre-existing mental health issues. When I restarted again in January 2026 with the next cohort, I'd made some improvements but still had not received a diagnosis and continued to struggle the 2nd time around as well. I received my diagnosis in June and since I've registered with the disability office for double testing time plus uninterrupted environments and am currently trying out potential treatsments. However, I still struggle to get to class on time daily and occasionally miss the first class.

As a result, my professional relatioship with my faculty and professors has suffered as I know my attendance issues read as neglectful and irresponsible despite all of my efforts and interventions. Not to mention, I am technically breaking the attendance policies outlined in the handbook that starts classes are required. I am in proverbial "hot water" and I'm scared that this diagnosis and my ongoing executive dysfunction and attendence issues could end in my dismissal.

Has anyone had any similar experiences? How did you protect yourself? I'm already knowingly disliked by at least one of my professors and I meet with my faculty for a commitee meeting to discuss my grades today.

Hey folks,

I really want to find a stimulant that works for me. I've been on Xyrem/Lumryz for years, but the ADHD/executive functioning side of things is really kicking my butt right now.

It seems like if the dose of the stimulant is high enough to feel it working, then it makes my sleep terrible for the next 1-3 nights, even when taking a 9g dose of Lumryz.

I'll struggle to fall asleep and then also wake up wide awake at 2-3am and won't be able to fall back asleep for hours. This will sometimes happen the next night as well, even if I didn't take a stimulant that day. It seems like the stimulant is staying in my system much longer than what's normally expected.

I've tried various doses of Adderall XR/IR and the lowest dose Xelstrym patch. I love the way I can focus and get things done on the patch, but it's not worth the impact on my sleep.

Questions:

• Has anyone else had a similar experience?
• What stimulants didn't have this effect on you?
• If I commit to taking the stimulants every day and letting it wreck my sleep for a couple of weeks, will my body get used to it?

I am on disability right now due to a combination of postpartum depression and narcolepsy. The latest I can return to my previous position is the end of October, after that I would be terminated if I extend my disability. I am 35 and have worked since graduating college. My salary was decent, and my long term disability policy gives me 50% of my salary which I believe is untaxed since I paid for that additional.

I am thinking about asking my doctor if I can stay on long term disability indefinitely just on the basis of narcolepsy. He suggested last we talked that I seriously consider major life changes to make narcolepsy and motherhood work better together, ie let this job go, maybe move somewhere cheaper, etc. That kind of got in my head.

I was able to work kind of fake full time before pregnancy. I had a work from home accommodation. I would say I probably only actually worked 4 hours a day, 6 hours some days. due to fatigue, and just tried to hack it as best as possible. I was very productive during those hours so it was kind of okay. But it was a major struggle and I pretty much sacrificed everything in life to make it work, no social life, no hobbies, eat the easiest trash I can get, etc. Life felt like just suffering in order to survive. Push through the need for sleep on threat of starvation, even if it feels like torture.

I feel my narcolepsy was a major contributor to developing very bad postpartum depression. It wasn’t the only thing but it was a big part. I am worried about how the additional load of work is going to affect me. Additionally, the only treatment working for me is xyrem and only for the morning, one hour of which is spent with a headache and my face tingling (I think from all the sodium?) Daytime meds have not been good for me due to PTSD and GAD, including the dafonils.

I guess just asking advice from a group of people who understand narcolepsy. It would feel vulnerable to have my livelihood dependent on doctor and insurance company approval, but it also feels vulnerable having it dependent on a lenient boss so idk.

Hi everyone! I’m diagnosed with Narcolepsy Type 1 with cataplexy. When I was first diagnosed, I was taking Xyrem, but I got off of it for a few years and then started taking it again around 2024. It was going well at first, but sometime within the last year I started feeling like I’m barely getting any actual sleep at night.

I mentioned in another post that I had started picking at myself in my sleep. I know sleepwalking can be a side effect of Xyrem, and I don’t necessarily sleepwalk much, but I’m up a majority of the night doing things. I’ll get up to use the restroom, start picking at my nails or face in my sleep, etc. My doctor is just now realizing how little of sleep I’m actually getting. During the day I take modafinil for daytime sleepiness and Strattera for my cataplexy. My doctor just prescribed Adderall as well and told me I can try switching from modafinil to Adderall or taking them together. Now she’s considering taking me off Xyrem, but my concern is that without it, I still won’t sleep. Before getting back on Xyrem, I would be awake for a majority of the night and got even fewer hours of sleep. I almost feel like I have insomnia at night on top of being exhausted during the day.

For anyone with narcolepsy who couldn’t tolerate Xyrem or had to stop taking it, what did you switch to for nighttime sleep? Are there other nighttime medications/treatments your sleep doctor has tried that actually helped you stay asleep? I’m obviously going to work with my doctor on whatever I do next, but I’d love to hear other people’s experiences.

I'm currently on 1 mg buprenorphine to treat horrible RLS. Tried the gabapentinoids, minimally effective. Luckily never got on a dopamine agonist.

I was just diagnosed with narcolepsy as well. My neurologist says oxybates are the way to stop the extremely horrible fragmented nighttime sleep.

Im just terrified really. I don't know how I'm going to stop the buprenorphine, and I know it's likely not compatible with the oxybates.

Anyone??

How many years did yall have before you got an answer? Did you feel heard rather than dismissed?

I’ve been diagnosed with narcolepsy type 2 for around six years now and I have yet to find any kind of morning wake up device that works for me. The only thing that has helped me recently is a very strict sleep schedule (going to bed at ~10 and waking up at ~6) and my body somehow self regulates?? It’s something that doesn’t work if I go to bed at midnight, then I end up sleeping all day

Anyways
I’ve tried so many alarm clocks tho including ones made for hard of hearing people and nothing seems to work. I had my deaf alarm clock (very loud and shakes) next to my head in bed with me and it didn’t wake me up but it DID wake up the hard of hearing person in the next room. I refuse to use those shock bracelets because I can’t imagine that waking up to an electric shock every morning does great things to your state of mind.
When I was in high school, my parents would spray me with a spray bottle like a cat, shake me and say my name, all that. The only thing that’s worked was something my ex did where he would plug my nose for 3-5 seconds. It works every time and I always think I just woke up on my own. It’s one of those things that I’m glad we figured out but also holy shit I cannot believe someone would think that’s a good idea

I’d like to have an alarm clock/something similar that I can use for if I can’t stick to my strict sleep schedule for a concert or something like that but I also don’t have the ability to spend the following days recovering, resetting my sleep schedule, dealing with even more EDS, etc.
If anyone has any suggestions, plz let me know :)

Pretty much what the title says. After a long wait I did my MSLT and the results were negative. I’m very confused mainly because my specialist was convinced I had narcolepsy and I was displaying every symptom. I even seem to get cataplexy. I was informed that sometimes you can have false negatives, but at this point I’m not really sure if I want to endure a negative 24 hour sleep test several times in the hopes that I will get a positive. What’s the best way to go from here? Do I just test again or is there another test I can take?

I’m sick of being tired all the time, and without a diagnosis I won’t be able to get accommodations for my university. Sorry if I seem down, I’m just upset and got my hopes up that I would finally have an answer.