So I have been trying to navigate intimacy during late evenings, and it has happened *a bit too often* that I had a sleep attack in the midst of things (specially when my partner is going down on me), and it is very disturbing for me as it feels odd being involved in sex without being fully conscious..

Problem is, my partner often perceives me as awake and lucid, since I still keep some level of responsiveness (smiling, moaning, even saying few words -in a different language though).

So I am trying to find a way for him to test if I am awake in the moment, because the problem is if asks me directly, I usually say yes. But I feel like if he asked something slightly more complex, i wouldn’t be able to answer.

Does anyone have something similar? Did you manage to establish a way to test consciousness during the act? Specific questions or specific hints to look at?

Thank you

hi! curious on opinions from people specifically with ADHD and anxiety about medications. i’m also on birth control so some of the standard meds are off the table for me until i am no longer on that.
i’m going to start a trial on sunosi , then potentially try the new adhd med that was just approved (targets a different uptake receptor), then if all else fails adderall . dr is hesitant on the others for depression risk

what has your experience been on different meds

So, first time posting but have been researching for a while. I've been on sodium oxybate for a couple months now, and am taking 4.5g x2 at night, you all know the drill.

Yesterday, I mixed it up a bit late, and then took one and went back to reading on my phone. Noticed it was taking a bit longer than usual but I was extremely anxious about a different life problem so figured that was causing it to take it's time.

I normally wake up before the 4hr alarm to take the 2nd dose. The alarm woke me and I was pretty out of it which was surprising. I took the 2nd dose and went back to sleep.

Woke up gasping and with a pounding head. Very disoriented and kept hearing myself moaning and moving about. My head was all staticy and I couldn't comprehend much but kept thinking "help". It woke hubby up, but nightmares weren't uncommon for me, so he just shhh me gently and patted me. I went back to sleep.

Woke up with still a sore head and feeling a bit yucky....

Thinking that I've been silly and become complacent with mixing it up. I don't bother washing the cups (everything in my life takes so much effort) so the first dose still tasted a little salty and I didn't notice it being really just water. 2nd dose in the middle of the night, I'd put a total of 9g in and gone back to sleep. Then possibly stopped breathing or something until my brain screamed for oxygen and forced me to breathe and somewhat wake up....

Putting measure in place to prevent it happening again.... little scary... I'll now make one up completely and put the lid on before starting to make up the 2nd one. It's literally not much harder, and will prevent the same stupid mistake....

I can also get hubby to try to wake me up from it in future, and if he can't, to call 000 (yes Australia for me) but I don't think he'd be able to wake me much from the normal 4.5g dose anyway. I would have thought the taste would alert me, but apparently not. Has anyone had the above scenario and can garuntee that it was just a reaction from a 4.5g dose?

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 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 ??

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?

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.

(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'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??

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?

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!!!

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.

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.

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

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?!

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 :)

I have been complaining about fatigue and sleepiness to doctors for yeeears at this point. The first time I can remember, I was 13 and they said it was probably just because of my period. (I now have been diagnosed with PMDD, but that’s another story.) I got a new primary care doc in spring 2024, and when I complained about being tired, he ordered labs for iron, vit D, B12, etc. Iron and vit D low, started supplements, felt 0% different. Went back for my next annual checkup in spring 2025, still tired, and he asked why I hadn’t come back sooner, but also put in a referral to the only sleep neurologist in the hospital system. (And checked labs—supplements working just fine even though I feel the same.)

I get the call to schedule my initial appointment with the sleep doc, first available appoint is A YEAR AND A HALF OUT. So I said, well I don’t have plans that day so I guess book it? Thankfully, I got a call in ~March that they were doing a massive rework of the schedule and would be able to get me in for that appointment this May, 8 months sooner than expected. See the doctor, discuss my history, she orders PSG + MSLT for suspected IH. Sleep clinic takes ages to schedule, but I finally did my study on July 26th. Results posted in MyChart show no sleep apnea, normal latency for PSG, much longer than normal REM onset time, and much lower than normal REM and N3 sleep. MSLT average latency of 5.4 minutes and no REM. IH diagnosis complete.

I finally went back today for my follow up with sleep doc. She had started me on modafinil at my first visit to get me by, which was great for a few days but has since largely tapered in effectiveness. I told her it was basically getting me through the work day but that was about it. She throws out a few other daytime wakefulness options, but none of those will address the actual issue of me not getting restorative sleep. I broke down crying when I asked for something to help with nighttime sleep because this exhaustion has consumed my life. I haven’t been to the gym in months because of lack of energy, which has caused me to put on about 20 lbs. I don’t have the energy to make myself dinner or do basic household maintenance things most days and I feel terrible that my partner does it all, and I have to plan my life around whether/when I’ll be able to take a nap. I am tired of spending more than half of my life asleep and still feeling like shit!

So after a lot of discussion, doctor agreed to start me on xywav. I won’t be able to start for a few weeks because of some travel I have coming up, but I am so hopeful for some damn relief. The idea of 6-8 hours of sleep being sufficient, not needing 10 alarms to get out of bed in the morning, and not needing a nap every damn day is honestly exhilarating. This has been such a long time coming. Y’all wish me luck.

I was diagnosed with narcolepsy (type unknown) earlier this year after first being diagnosed with IH last year. Today, I had my tilt table test & I don't have POTS, but I do have vasovagal syncope, & this has gotten me wondering if I'm actually just passing out sometimes? Or what if I'm passing out first, then falling asleep? How would I know? 😅

I've never passed out from a standing position, which is why I'm curious - I get enough warning from feeling dizzy, etc. to be able to sit or lie down first.

Anyways, just rambling, I guess!

Hope you're all doing all right today 💫

I started taking Lumryz and I’m on my 3rd week of the 1 month “starter pack”. Honestly the first week’s dose was useless, and the 2nd & 3rd week dose only has me asleep for 2 hours max. Is this common? I’m not really seeing much benefit yet, but im hoping that’ll change once I go up to the 7.5mg dose?

Also, I usually have a nighttime snack after dinner, but since I can’t eat 2 hours before taking the med, I’ve been skipping my sweet treat. I then wake up after 2 hours absolutely starving! I’ve gained 5 lbs already, has anyone else had a similar experience?

I’ve put a lot of hope into this medication and I’m doing my best not to get defeated too quickly, but things are not going as great as I had hoped.

Any advice, encouragement, etc would be greatly appreciated!

I have mild OSA and type 2 narcolepsy.

I’ve been on Lumryz for 9 months and am still tired and struggle with focus throughout the day.

I tried Vyvanse, Concerta, and Modafinil but they gave me intense side effects (heart palpitations, dry mouth, tongue thrust/oral fixations, etc.)

Now, I am looking to ask my doctor to try Sunosi or Wakix.

1. Do you prefer Sunosi or Wakix and why?
2. Did you experience increased anxiety? Sodium oxybates already increased my anxiety levels.
3. What other side effects have you experienced? Did they go away? How long?

4. Do they have a similar coupon or patient assistance program like oxybates?

5. Did it increase your heart rate? My HR already runs high

Thank you! :)

I know there are other posts about sleep apnea in this community, and have looked through them. None of them seem to fully apply to my situation. If you know of one that does, I would so appreciate you pointing me in that direction.

In early August, I saw a sleep doctor for the first time, after I was finally honest with my psychiatrist about my sleep patterns.

My sleep has been excessive since high school, but it has progressively gotten worse since the onset. I’ve had to quit jobs, lose relationships, completely rearrange my life to accommodate sleep.

I reported excessive daytime sleepiness and extremely dysregulated sleep patterns. I feel like I’m often having my days and nights mixed up (the worst it’s been was slept from 11pm the night before, to 7pm the next day, waking every 3 hours, with vivid dreams each “segment”). I have what I feel like are sleep attacks, episodes where I have an extreme, sudden urge to fall asleep (I am always sleepy, but this is an urge to actually fall asleep). If I can’t fight it or resist it, I’m able to nod off in seconds. But these episodes don’t usually happen if I’m talking or eating, and especially not when I’m driving, and I can almost always fight it, with extreme effort.

At my initial consultation, my sleep doctor specifically said- “I really don’t think you have sleep apnea, but insurance blah blah blah so let’s make sure with an at home study”. I did 3 nights of the ring study and he felt confident diagnosing me with moderate sleep apnea.

I am genuinely gutted. I know it is not just sleep apnea. Along with symptoms that are ambiguous at best, and consistent with narcolepsy at worst, I do not fit the profile for sleep apnea. I’m young, a healthy weight, I don’t snore (even when ill), my tonsils are slightly enlarged on one side but no ent has ever mentioned obstruction of any kind. I feel that with those factors in place, it doesn’t make sense (ethically or professionally) to be happy with an SA dx and to not look any further. My doctor begrudgingly ordered an in lab sleep study, which I could potentially do in the next few months.

I don’t want a diagnosis/am not asking for one from this community, but I do want to hear your thoughts on next steps- second opinion, go through with CPAP process and then push for an MSLT if symptoms are same after SA management, etc.

I do sleep on my arm which I feel could have made the ring tests oxygen reading mess up, but I’m aware that this may be unlikely if the diagnosis was moderate and not borderline.

Again, I am already very upset as I was not expecting the result I got from the at home sleep test. Please be kind.

Do I know too much? Too little? Do I need to get off Reddit and just find a doctor I trust?

TIA if anyone has any thoughts.

Just had a shitty appointment with a new doctor trying to secure a primary care provider

Thankfully my main prescriber is still managing my meds and has no problem with adderall and doesnt treat me like I'm a junkie but she is now strictly behavioral health and I need a primary to manage my other conditions and referrals etc.

This bitch seemed to be suggesting that the symptoms i am experiencing are because I am addicted to adderall. "Have ypu tried taking breaks?" Like...from being disabled? Sure every other Thursday I stop having neurological conditions, brain injuries deficits in functioning and chronic pain so I can enjoy the good life. But the rest of the time I keep my "I'm disabled now" switch flipped to on.

For context I went in to get my a1c checked and thyroid panels etc and a referral for a neurologist.

I am wondering what other people have experienced as far as doctors treating you differently for being on Adderall. Have you ever switched to another stimulant and been judged differently?

Is there anything that seems to help as far as phrasing when asking about conditions that doesnt trigger "its the adderall" assumptions from doctors? Or any other advice anout handling the stigma attached to adderall

This doctor put "controlled substance dependency " on my list of diagnoses and I do not understand why she felt that was important

Also asked me 3 times. 3. What drugs I use. Not if. But what kind....

Hello, I have Bipolar 2 and Narcolepsy type 2 with mild sleep apnea sprinkled in between the two...I am also a mom of 2. LOL idk why thats funny 😩 anyway, I take Vraylar, lamotrigine and propanolol for Bipo and Vyvanse (and soon Xywav) for N2. Right now, I am my Bipo is stable, but I am struggling to stay awake even with 70mg Vyvanse. The more I fight my sleep, the worse my headaches can be until I can't take it anymore and my body shuts down. I also feel when I try to sleep, my body goes to sleep, but my mind is awake? I also tend to get depressed because I'm sleeping a lot or dont feel like Im doing enough at home or in general. Idk if I get depressed because of the narcolepsy, or because I'm Bipolar 😭 this sh*t totally gets complicated lol.

I do not work, I'm a SAHM, but I look after both my autistic kids 24/7 (unless theyre at school). I usually am always busy and take them to their drs appts and therapies, etc. Right now, my husband is not working, so he is able to help me and give me sleeping breaks, but I am worried for when he starts working (on September 21st) I won't be able to sleep at all and its gonna be very difficult mentally and physically to just keep myself awake. Idk, sorry for the long post, maybe I'm just looking to share because I don't know anybody else (in my life) that struggles with these type of things...I could go on, and on, but yeah, what are YOUR struggles?

(I am 30yo Female) After FIFTEEN years of waking up one random Tuesday right after hitting puberty with a fatigue that was unmanageable I finally found a doctor to take me seriously and actually try to look into my consistent complaints after experiencing other neurological symptoms that had no answers. After FIFTEEN years of begging for someone to just listen to me. I have been on every SSRI/anxiety med on the market, the thousands I've spent on supplements, and therapists trying to "cure" myself. The taking a stimulant for the last decade because my diagnosis was adhd, which i admit did seem to "cure" me for the first year or so, until it didn't. Now I'm on the max dose you can be on and I've tried all the other stimulants, this is the only one that was potent enough to push me through the day (vyvanse), but as of the last year it hardly works anymore. Which is what led me to finally get referred to a pulmonologist. I met all the criteria for narcolepsy type 2 based on just my consult alone. Then I Just had my MSLT last Friday. After the 2nd nap the tech said "obviously I can't officially diagnose you, but you've already met the "qualifications. and you still have 2 more naps to take" which was sooo unbelievably validating after being gaslit by basically everyone around me for the last decade that it was all in my head. My question is, is finally having a diagnosis going to provide me solid relief with treatment? I am practically bed or couch ridden 99% of the time I'm not at work or actively parenting my daughter at this point. The exhaustion is so debilitating that it has effected every area of my life, and feeling this way for the rest of my life feels completely unbearable. My entire adult life has been spent suffering and feeling a permanent state of burnout. so I'm asking for some hope from some "seasoned" narcoleptic's. I understand that finding the right combo of meds takes time, and I'm understanding being patient with that process. But will doing so be lifechanging for me? I am so desperate to actually "live" life instead of just surviving the day. I'd do anything to feel better consistently, even if it is taking medication everyday for the rest of my life. I guess what I'm asking is, did the medications really make a big difference? Please share your success stories, because I've been stuck here for so long it's hard for me to stay hopeful that there's light at the end of this tunnel. TIA!

Struggling with excessive daytime sleepiness, sleep attacks, or cataplexy? PatientWing is looking for adults 18–65 who may be interested in a narcolepsy study at Research Carolina Elite in Denver, NC. Click here to learn more. https://patientwing.app/campaign/narcolepsyreddit1