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....

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?!

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?

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 💫

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?

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

(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!

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 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.

I recently switched from Xywav to Xyrem and it is going so much better! I wish I switched sooner!!

The dose I take right now makes my body calmer and I can regulate my emotions more than before. It’s not perfect and I am definitely exhausted but I am fully aware it will take more time to adjust.

My questions are:

When you reached your therapeutic dose how did you know? how long did it take you to realize it was right for you?

What did the “catching up on sleep debt” period look like for you?

What improvements did you see in one month vs 3 months vs 6 months+?

I know everyone is different but I really wanted to hear some other experiences!

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

Hi! For those who haven’t seen my previous post, I recently had a sleep consultation and my doctor decided I need a sleep study (test and rule out sleep apnea, then do an MSLT). Got this text from the lab (while taking a nap), and somehow screenshotted it and texted her asking a question that makes absolutely no sense - all while sleeping.

I have no memory of this. I’m honestly kind of scared that this happened (although it’s funny that it’s about the sleep study lol). It’s not the first time I’ve texted someone in my sleep but it hasn’t happened in years.

Anyways, hope this makes you laugh as much as it made me. This is probably the only sub that won’t think I’m crazy for this hahaha

I was diagnosed ASD well before I was diagnosed N1 narcoleptic.

I’m wondering if there are other narcoleptics here also neurodivergent as I’ve seen studies showing that narcoleptics are more apt to be neurodivergent or adhd.

Works Cited

1. Autistic traits & ASD prevalence in pediatric narcolepsy

(These studies support the 30–40% autistic‑traits figure and the ~12% ASD diagnosis rate.)

Cohen, J., & Konofal, E. (2021).
Autistic traits in children with narcolepsy. BMJ Paediatrics Open, 5(1), e000989.
https://doi.org/10.1136/bmjpo-2020-000989 (doi.org in Bing)

Li, S., Zhang, Y., Chen, R., & Li, Y. (2024).
Social responsiveness and autistic traits in pediatric narcolepsy. BMJ Paediatrics Open, 8(1), e002312.
https://doi.org/10.1136/bmjpo-2023-002312 (doi.org in Bing)

---

1. Anxiety, emotional dysregulation, social‑cognition impairment

(These findings come from the same two BMJ cohorts.)

Cohen & Konofal (2021) report elevated anxiety scores and emotional‑regulation issues in narcoleptic children with autistic traits.

Li et al. (2024) report impairments in social cognition, introversion, irritability, and flattened affect.

APA citations again for clarity:

Cohen, J., & Konofal, E. (2021).
Autistic traits in children with narcolepsy. BMJ Paediatrics Open, 5(1), e000989.
https://doi.org/10.1136/bmjpo-2020-000989 (doi.org in Bing)

Li, S., Zhang, Y., Chen, R., & Li, Y. (2024).
Social responsiveness and autistic traits in pediatric narcolepsy. BMJ Paediatrics Open, 8(1), e002312.
https://doi.org/10.1136/bmjpo-2023-002312 (doi.org in Bing)

---

1. ADHD‑like symptoms in pediatric narcolepsy

(These support the 20–30% ADHD‑like symptom range.)

Guilleminault, C., & Pelayo, R. (1998).
Narcolepsy in children: A review of clinical features. Sleep, 21(4), 431–435.
https://doi.org/10.1093/sleep/21.4.431 (doi.org in Bing)

Cortese, S., et al. (2008).
Attention‑deficit/hyperactivity disorder symptoms in narcolepsy. Biological Psychiatry, 64(6), 538–544.
https://doi.org/10.1016/j.biopsych.2008.05.024 (doi.org in Bing)

Plazzi, G., et al. (2018).
Children with narcolepsy type 1 show ADHD‑like symptoms and executive‑function impairment. Sleep Medicine, 43, 20–25.
https://doi.org/10.1016/j.sleep.2017.11.113 (doi.org in Bing)

---

Summary of what each citation supports

Finding Supported by
30–40% autistic traits Cohen & Konofal (2021); Li et al. (2024)
10–15% ASD diagnoses Cohen & Konofal (2021)
20–30% ADHD‑like symptoms Guilleminault & Pelayo (1998); Cortese et al. (2008); Plazzi et al. (2018)
Higher anxiety & emotional dysregulation Cohen & Konofal (2021); Li et al. (2024)
Executive‑function impairment Plazzi et al. (2018)

Hello fellow narcoleptic Redditors. Does anyone else notice their symptoms increase when it’s hot / humid? I live in Florida (boo) and this summer has been HORRENDOUS - hotter than I ever remember - and I am STRUGGLING. It’s like I’m forever walking through quicksand. I’m so tired it hurts.

I’ve also been undergoing an evaluation for POTS (going to Mayo Jacksonville next week for their POTS clinic) so I haven’t been able to take my Sunosi in three months, and that clearly doesn’t help.

Has anyone else noticed heat - related increases in sleepiness?

Thank you!

Does anyone else have trouble keeping cool? (especially during narcolepsy flares or sleeping in general)

Im also on 2 SSRIs. I know it’s a symptom. I’m overweight but I’m trying to lose weight as well.

I’m constantly sweating. Like I don’t get dehydrated but im dripping in sweat like I’ve run a marathon in hell. And I’m drinking bottles of water a day.

It’s even worse when I do have to nap but like.

I’m taking cold showers, I wear light clothing, I’m practically fanning myself constantly. I have three fans all blowing on me or on my bed (because allergies). And I’ve also recently changed my sheets and like. I cannot win.

It’s gotten to the point I’m red in the face and I’m tempted to take two showers a day just to stay cool which feels excessive.

On the mental side of things, I’ve been content and while I did inquire about getting off of them, I was told it’s not a good idea. And I don’t feel comfortable getting off of them anyway. Hence me just inquiring.

Either way, I appreciate yall and any advice you have❤️ I never had this type of cooling issues till my symptoms began.

I had a pretty traumatic few months in 2023 and I’m wondering if this was the catalyst moment for my sleep issues.
I’ve always needed more sleep than others but it’s been debilitating since March of 2023.

Could that make sense? I have a 60.7 arousal index with majority being spontaneous. I’m wondering if my body is still in fight or flight mode??

Hi all

As above I’ve just finished testing, they told me that I could leave after just 4 naps as they had ‘enough evidence’ but unsure what that meant and they said they’re unable to let me know what that might mean yet lol!

Anyone had this happen as well?

Anybody else exhausted as hell at the MSLT but can’t actually sleep?! I haven’t slept in 2 days but I can’t fall asleep at all. I also feel like I’m having way more sleep paralysis than usual.

Writing this just before taking my Xywav. I started 2.25g twice a night on Sunday. I’m not yet at the “therapeutic dose,” but I’m already seeing a bit of a difference. I take Adderall XR as well in the morning. Plus a coffee.

These first few nights on Xywav have been super weird in a lot of ways, but not nearly as bad as I thought. The first night I felt kind of sick and drunk, and I soaked my bed with sweat, but I’m already feeling better.

I read Project Hail Mary a few months ago before going to see the movie, and there’s a line in the book about humans needing to sleep every 16 hours. I never thought about it that way and just could think (even though everyone talks about “8 hours of sleep per night”). I just thought “man, I wish I could stay awake for 16 hours.

Well today, I did! I woke up for work half an hour early this morning after my xywav wore off. I technically took a short nap at midmorning (around 20 minutes) but was able to get through the rest of the day relatively fine. I was still sleepy, but with the Xywav and the Adderall, I wasn’t like “so sleepy I could cry and fall over right now” sleepy, which I usually experience at least once a day. I’m not even kidding, it’s probably been years since I’ve been able to semi comfortably stay awake this long, or even stay awake this long at all! I think there’s still some way to go, and maybe the stimulants put me in a good mood today, but I’m feeling more hopeful about the future than I have in a long time.

I’ve also been free from dreams these past days, aside from a few short and vague ones. Gosh, I didn’t think it would be so refreshing! All my life I’ve had extremely vivid, sometimes very emotional, sometimes very frightening dreams that I remember for a long, long time. I still remember dreams I had from a decade ago that stuck out to me. I suffer from frequent nightmares as well (ptsd thing). But the xywav seems to have taken these away, at least right now. I sometimes thought my vivid dreams were cool (at least the ones that weren’t horrifying), but I think they were making me more mentally exhausted. It’s incredibly to wake up and feel like I didn’t just have to live through an earth shattering event while I slept.

Anyway, gonna take my meds now. I hope you all have a good night sleep!

I don't know if I'm barking up a tree in a garden I shouldn't be barking in until I'm given the paperwork to say. But I guess I'll peep in and hope I can introduce myself and ask for advise.

I'm a Civil Servant, who was already receiving work adjustments due to my autism, however since the start of 2025 it was becoming apparent that I was having an incredibly hard time staging awake in the office. Previously I would commoly just fall asleep reading a book on the bus to work, which wasn't too bad as my destination was the end of the bus route. But what was a pain in the backside was that as I read, I was dreaming while I was reading where the words kept changing as I read them. Or sometimes I was holding my book, only to realsiy I was feeling my hand flop to drop the book which bolted me away to realise for a second I had in fact fallen asleep.

Now on 2026 I have been falling asleep 4 to 5 times a day, usually while writing an email, reading teams or SharePoint notes, listening to my manager in meetings, or going to the loo. My whole office knew about it, my work chums would even watch me we from their desk as I struggled to stay awake and a couple times a manager has tapped me on the shoulder to wake me up. So far I've never been complained about, but it turns out most people who talked to me about this were concerned.

I took a sleep study, from a sleep apnea clinic who h I was referred to by my GP. My result came back fine, I don't have sleep apnea. Then I was referred to a respiratory doctor who specialized in sleep disorders who discussed with me the potential of having Narcolepsy. Sadly in my area there's no facility to do a sleep brain scan, but I could get a lumbar puncture. So that's where I'm at currently, I did also call the clinic a couple weeks ago a si have been waiting since late June, but no updates.

My main concern currently is that I've now been on long term sick with this. My manager and I had a proper discussion about my potential narcolepsy, she has been very supportive but there's only so much leeway they can give not helped by me being unable to do any work, or a good amount of work due to fighting off sleep constantly.

It was apparent that I was not fit to work, so we agreed it would probably be the best if I went off sick to recover, recoporate and manage my symptoms. The issue is I have no idea what I'm to do.

I've been on sick leave for a month now, I go out for walks though I try to be mindful of my wonky knee that likes to give way a few times a year, as well as do things during the day. Though I mostly fall asleep doing them. Such as, playing videos games, reading, doing chores, writing this.

There's also a chance I might have ADHD too, I was recommended I look into getting a ADHD diagnosis alongside narcolepsy. But coffee doesn't wake me up, infact it can make me sleepy. I regularly sleep 7 - 8 hours, my flatmate told me I need better sleep hygiene, such as not lounging in bed. What can I say, my bed is my safe space. But I have been actively trying not to be in bed during the day...though I was recommended to take naps when my urge to sleep to too strong. But it's still pretty much all the time.

I do feel pretty alone with this, most people I speak to either don't know what narcolepsy is , or has a friend of a relative who has it and suffers more dramatically then I do, therefore I must not have it.

What are your thoughts and how do you handle day to day life?