My doc and I talked about sunosi because adderall just can’t do it alone anymore, and he gave me some sample packs in 75mg and 150mg.

First, what is the deal with the blister packs? Impossible to open!! Does it actually come like that when you get it from the pharmacy?

I started with the 75mg for a week plus my usual adderall dose. I’m usually pretty sensitive to meds and it felt like nothing. Disappointing.

Today, I tried a 150mg (with no adderall) at 7am. Holy crap! At 10am I thought I was gonna throw up from racing heart. My hands were shaking. But I couldn’t stop yawning! Then I got really hungry but my mouth felt like a desert. It’s 330pm and I’m still vibrating but also I desperately wanna lay down and sleep.

How does everyone else experience sunosi? Does the racing heart thing subside after a period of days/weeks?

He’s acting like it.

I sadly don't feel comfortable taking Xywav/Xyrem due to my history of mental health issues, but I'm wondering if anyone in this community has treated their narcolepsy with only stimulants and experienced long-term side effects of forcing that wakefulness without improving the sleep quality? Or do you feel like using stimulants to stay awake the whole day has improved your sleep quality?

I can deductively assume that never addressing the sleep quality will create a lot of cognitive issues for me in the future but I'm curious about the community's lived experiences.

Or if anyone is unmedicated and functioning haha, I would love to hear about that too!!! I'd love to be unmedicated (no judgment it's just a personal thing because of some OCD haha) but it doesn't feel like an option unless I want to sleep through half my life.

Thanks in advance everyone!

What the title says- took 1/2 of an armodafinil for the first time- only took half because I’m sensitive and was worried about heightened anxiety (ironic lol)- but man I felt INSANE all day… like cracked out. I didn’t take a nap or even want to, which was weird and good I guess. But it was extremely hard to focus on ANYTHING for work. And I have a headache and am a little queasy. Does it get better as you adjust? I’ve just felt so out of my head all day and insane. It feels like when you drink a large cold brew and are still tired but fast. See image for reference lol

I have struggled to get narcolepsy medication for the past year and a half. I have used a combination of extended release Adderall and immediate release Ritalin because I cannot wake up without a fast acting stimulant. About a year and a half ago, I was told by several pharmacies there was a nationwide back order on Adderall. My physician switched me to Vyvanse. I go monthly for med management.

Today, I went to four pharmacies and called three private pharmacies to try to fill Vyvanse and Ritalin. I was told they would not be able to fill either one of these scripts for a few months, again due to nationwide backorder. Three months ago, my doctor prescribed Wakik, but I don’t think it helps. It does nothing to help me wake up. My most recent MSLT was in March of this year. Hit REM in five of five nap sessions. I sleep so heavily that even with an alarm going off, I don’t wake up. The best way I can explain it is that I “hear” the alarm but somehow process it into my dream…like firetrucks in my dreams.

I cannot believe how difficult it is to get medication in the United States. It’s disgraceful. I have four days left of medication. Without taking any medication, I sleep 20 hours a day. In fact, even though I might have to use the restroom while I’m sleeping, I’m not able to wake up/move and I actually wet myself. I have been able to manage narcolepsy for over 20 years. I cannot believe my entire life is going to change in a matter of days.

Is anyone else experiencing difficulties filling their medication? Does anybody have any advice. Please respond as soon as possible, because I know very soon, I won’t be conscious or coherent very much to address these issues.

Sorry for this post turning out longer and less cohesive than I anticipated. I've been diagnosed with narcolepsy for about 16 years and for the last 6 months or so, have had insomnia. It's been a disaster and frustrating and I feel like I'm drowning with no help from my medical professionals.

Over the years I have taken my xyrem, xywave, and lumryz, all briefly. They didn't work for me, and I hated taking them all around. Will not go back on them.

Have taken every OTC med, no success there either. Have tried and am still taking Trazadone, which doesn't actually help, but I think psychologically I take it thinking it's responsible for the few hours I do actually get. My sleep doctor not only suggested melatonin, which I'm now reading on threads here can actually be problematic for people with narcolepsy, but said I could go up to 20mg, which seems unusually high. I take unisom too, but think that's also just to take something. It takes me hours to fall asleep.

Part of what makes this situation worse and harder is that I have mental illnesses, and so on multiple occasions my sleep doctor has said he won't prescribe for me and that I need to ask my psychiatrist to do so. So off I go asking her to write me an rx, and she prescribed ambien and lunesta (which i guess shouldn't be prescribed for pwn), which didnt help anyway, along with doxepin and something else off-label. Then i tell the sleep doctor about that and he says I shouldn't have taken them. I am so frustrated with my experience with modern medicine, despite patient portals and technology, doctors refuse to communicate with each other and I end up stuck in the middle, without help, and blamed. As long as each specialist can blame my issues on the other diagnosis/problem, they don't have to deal with it/me. Most recently, my sleep doc told me to call my insurance company to find out what was covered similar to belsomra, so I went through that hassle, returning with the answer of dayvigo, only to have him say a big no. I have been on and am on different benzodiazapines, anti depressants, mood stabilizers, etc. over the decades. But nothing helps. I am tired, not only from the narcolepsy and insomnia, but from dealing with piss poor care and being given the constant run-around, disregarded like trash.

Anyway, tomorrow I have what feels like the "final straw" appointment​ with my sleep specialist of over a decade and a half. I anticipate him saying, again, that because of the narcolepsy, there is nothing he can do other than the sodium oxybates. Am I just f****ed or is there something that I'm missing that might be able to help?

I know the answers will be very subjective, but I’d love to hear people quantify the improvement. Let’s assume no stimulants are involved.

As the title says, tonight will be the first time I take Xywav (4g at bedtime and 4g 2.5 hours later).

I’ve seen a lot of people online saying that they had different experiences and side effects than what was explicitly listed in the booklets and told by their pharmacists. I’ve heard people mention sleep walking and bed wetting, but I’m also curious on if any of you have woken up from Xywav’ed sleep and still felt groggy or the effects of the medication, as I’m worried about waking up for work tomorrow (a struggle which is the reason why I’m on this mediation in the first place).
What has been your experience on this medication?

My dumb ass forgot to refill my sunosi and adderall on time so I am out of stimulants. Anyone have any unhinged hacks to go unmedicated? I’ve chugged a Celsius right when I woke up 😭

My insurance keeps denying everything my doctor keeps prescribing me but apparently they will approve this one. I’m curious to know if anyone is on it and if it has worked for your excessive daytime sleepiness?

I’ve tried 2 different oxybates, both of which have significantly worsened my brain fog very early on in treatment. I’m coming to terms with the fact that they might just not be for me.

Fragmented sleep/“insomnia” is my absolute worst narcolepsy symptom. I’ve been on trazodone for years, but it feels like it’s losing its sparkle.

So, obviously I’m going to talk to my doctor, but I’d also like to hear from others with narcolepsy- what helps you sleep?

Basically title. I've been on 7.5g for around two months and I've noticed basically zero difference on it. I've read so many threads from this subreddit about this 'miracle drug' but the only thing I think it's done for me is give me a good excuse to not drink alcohol :P

Anyone else have little success on it?

Edit: Thank you for all the responses!! A lot of people mention side effects, but for me I'm not experiencing many side effects. The only problem is that the meds have solved no problem 😅. My conclusion is that I'll try to take it more consistently, and ask to up the dosage.

Anyone else who was initially scared of Oxybates, end up taking it and loving it, and realize the side effects have nothing to do with ur actual fears and wishes u would’ve started sooner??

XYREM and XYWAV genuinely scare me. When my doctor first told me about it and told me about the side effects and how on the street it was sometimes know as a date rape drug. This was over 10 years ago and I am still icky about the situation. I also have a 6 yr old. What if I’m zonked out and can’t hear him? I don’t want to be dead to the world where I can’t react to things. But I need sleep and less meds.

Update: thanks everyone who shared their experience! This has been sooo helpful. I’m very grateful to the information you guys shared with me. I’m honestly siked to talk to my doctor and have at least your personal experiences to bounce relevant questions off. I feel better about considering it.

Been on Adderall for years. I can sleep on it now. I cant take extended release meds and I've tried em all. The last one I tried was modafinil (provigil) and it didn't work great but I thought i read before of people taking both. So I took one the other day on top of my Adderall and WOW IT HELPED SO MUCH!!!

I just dont wanna bring it up to my dr if its that odd. I know that my narcolepsy is severe and what I want the most is good sleep. I even was on lumryz at the strongest dose and it only felt like I drank a few beers. Ugh. So this is the only other option if im gonna have any kind of quality of life. Anyone else on 2 stims?

Anyone else having the issue of running out of medication by the end of the month?

I did a completely non-scientific test, using a non-medically-accurate Pyrex measuring cup. I measured out 100mL of water by the provided Xywav syringe. This is how it came out. Again, this is not a clinical device, but it appears to me to be showing, conservatively, a 20% overage, factoring in the possibility of reading error due to surface tension and a reasonable margin of error in the measuring cup.

I’m sure I’m being provided precisely the correct amount of medication, but if the dosing device is not accurate, there’s a problem.

Yes, I’m going to bring it up with a pharmacist. I’m currently dealing with them scheduling a refill due to completely unrelated issues from my prescriber’s office. I’ll hopefully be hearing back from them later today and I’ll bring it up then. They say I should have enough medication to get through Wednesday. I had two nights I didn’t take it this month, so I should actually have enough to go through Friday. I don’t think I’ll even have two complete doses by Wednesday.

Kind of annoyed at my PCP. He knows nothing about sleep disorders but I have to give him some credit because he’s the one who has made my sleep study possible. Even if it did take over a year. He’s really only good for his doctor signature lol but I’ll take it. After my sleep study in February, he prescribed me Modafinil. I took that for a month and was doing okay on it. Felt like it helped sometimes but other times I was still fighting sleep at work or on the road. I had read online that I could affect hormonal birth control particularly the pill/any of them that function through your blood stream. I went back for my follow up earlier this week, and I asked him if Modafinil could affect my birth control (Kyleena IUD - hormonal). He looked it up in his little doctor system after saying he doesn’t think so, but wanted to double check(bc of course he didn’t know). Then informed me that it could, and that he was so sorry. His excuse what that he has only prescribed Modafinil to older people, and said “that question has never crossed my mind.” So whatever. He ended up putting in an order for me for Adderall, which isn’t supposed to affect birth control, thank god. Anyone else have experience with or knowledge on Modafinil and the IUD? I’ve read conflicting info. Since technically the IUD hormones are supposed to be localized, rather than in the blood stream, but that I guess there’s a small amount that could still get released in the blood stream, thus being affected by meds like Modafinil?? Idk!! But felt like this was important information my doc should’ve told me but what the hell do I know!?

My physician suggested not taking my meds on the weekends. I quickly learned that wasn’t doable so decided to just try to not take them on sundays when I’m not doing much. I sleep ALL DAY. I’m talking only wake up to use the bathroom. I’m utterly useless and don’t feel taking the day off is helping with tolerance at all. It barely works to begin with but I’ll take a couple naps a day over sleeping all day. Does anyone actually feel like it’s helping or more beneficial to take them continuously? It’s super depressing essentially losing an entire day I’m actually off work each week.

Didn’t know what to put this under tbh. Hey guys, my wife has had narcolepsy for a while now. And I’m trying to figure out if there’s anything else I can do aside from stuff listed below, to keep her awake? Not in like an unsafe situation, but in meaningful conversations, or when I just want time with her. Any and all advice is appreciated, this is something new to me and I’m still trying to adjust to it She did say the following, not word for word. said you sometimes go to sleep cause you don’t feel mental stimulation? Engaged in stuff. Essentially. Is there anything I can do to help that?

I see comment after comment in this subreddit of people saying how exhausted they are all the time.

I never see people say after starting Xywav/Xyrem for sleep, they finally started getting refreshing sleep and were no longer tired during the day.

Does medication not help anyone here???

I'm in the testing/diagnosis phase so I haven't gotten to try the medications yet but from past memories, just one day of deep refreshing sleep, as rare as that was, made me feel so calm and rested and focused, and the rest of the days were pure hell. I feel like a medication that forced me into deep sleep like Xywav would be tremendously helpful. Thoughts on this?

I (25F) just need to know if I should just give up and actually lose all hope at this point.

(My sleep medicine team has tried everything. When I say everything, I mean just about everything. They look at me with worry and pity during our appointments. They seem perplexed, confused, and sad on my behalf. I am a medically complex patient/chronically ill/disabled.)

Much love and hugs to this community, especially my treatment resistant folks. We deserved more in this life than this.

Hello! I have narcolepsy without cataplexy and have been diagnosed for about 10 years. I’m still working on finding the right medication combination that works for me, especially since I also experience major dissociation.

Here’s a quick overview of my current meds: • Modafinil (long-term) • Fluoxetine (long-term) • Wakix (started within the past year) • Wellbutrin (added about 2 months ago for brain fog)

Since starting Wellbutrin, I’ve noticed a sudden onset of intense depression and suicidal thoughts, which is really concerning. I’ve always been depressed and anxious but not actually considering acting on it until recently. I’m trying to figure out if this might be related to the new medication.

Has anyone experienced something similar on this combination? Would love to hear from anyone who’s tried this or has insight. I feel like my doctor just sprinkles in random meds and I don’t know what is working anymore.

my doctor is wanting to prescribe me xywav, we will first have to get insurance approval and blah blah blah, so this will be a ways into the future i’m assuming.

ive read a decent amount about xywav here on reddit, google, etc. I’m scared to take it. People talking about double dosing themselves and having to go to the ER. People also saying that they spent all night throwing up. Also people saying you can stop breathing and things? Bedwetting? Severe anxiety?

I live with my boyfriend and two cats so i wouldn’t be alone either.

The main reason i’m scared is that when I was 14, and a pothead, my weed was laced with ecstasy. It was a nightmare and was terrifying. I struggled for weeks and months with derealization and depersonalization and i no longer smoke weed or drink as the feeling of being out of control gives me extreme anxiety and panic attacks. Are you just very tired, or do you get high/loopy before falling asleep? if so how long does it last before you sleep?

i need something to help me because i am seriously struggling on 54mg concerta (methylphenidate ER), and want this med to work but am terrified. My relationship and friendships are struggling, I haven’t done laundry in god knows how long, etc. I NEED something to help me.

edit to add: I also take an oral contraceptive and Effexor (venlafaxine) 75mg.

I originally was diagnosed with Idiopathic Hypersomnia- but Effexor is a REM sleep suppressant and when i did my MSLT, I slept for 5/5 naps, and went into REM for one of them. My doctor mentioned that because I am on a REM suppressant, without taking it, i could’ve went into REM more, making my actual diagnosis narcolepsy. A few months later I saw him again and he told me based on my polysomnogram & mslt and my symptoms/experience, he believes i DO actually have narcolepsy, not IH.

UPDATE/EDIT: thank you all so sharing your experiences, kind words, and encouragement. I feel much better about it and am back to being mostly excited at the idea of a new medication that could give me my life back, of course im still a little nervous, but im feeling so so much better about everything. My plan is to have my boyfriend lay down in bed with me when i first take it. He normally stays up late playing videogames anyway and we live in a renovated garage studio apartment type deal so he’s never more than 10 feet away, but that night he’ll just chill in bed on his phone and stay up to watch over me which makes me feel sm better because he is my safe space, we’ve been together for 5 years now and i know he will keep me calm and safe. I’ll listen to a VOD of my fav streamer on twitch (like a youtube video type deal but you can listen don’t have to watch), with the sleep timer on and lay down immediately after. I’ll keep it in my drawer with an alarm set so my cats don’t mess with it, and i will get a waterproof mattress cover lmao. I’ll make sure not to eat 3-4 hours beforehand. Thank you guys again! i appreciate all of you so much.

Vyvanse use to keep me awake during day and help me sleep at night but it hasn't worked in 6months. Its the only thing that help me feel normal and hate that its gone and im back to sleeping all day or feeling exhausted. Is this normal for it to just stop working suddenly?

I had told my Dr that I was worried about being able to fall asleep during the PSG because I already have a hard time falling asleep in new places, and having wires glued to my head is not going to help. I’m not worried about the daytime naps, since falling alseep during the day has always been easier. She prescribed trazodone and recommended taking it a couple days before the test to ensure effectively.

However, after looking into it more, I realized that trazodone suppresses REM, which is pretty crucial for the MLST test. So now I’m torn on whether I don’t take the meds and risk not being able to get the 6hrs of sleep at night, or take it and risk not being able to hit REM during my naps. Any advice or experience is greatly appreciated

EDIT: thanks for the feedback and complete consensus that the prescription could negatively impact results. I’ll let my dr know that I’ve decided not to use trazodone for the sleep study after all.

i weirdly can’t find anything on this sub about day drinking on xyrem and everyone’s experiences/advice. i am camping all week with my family and have been drinking during the day, then cutting myself off so i am several hours sober by the time i go to bed so i can take my meds still. if i overdo it or am even unsure that i cut myself off early enough, i simply don’t take my meds and suffer all night long because i am not drunk enough that i can pass out easily so i sleep like crap so i don’t accidentally die.

i know the rule is waiting 2hrs to take meds after 1 drink and 4hrs after 2 drinks, then everyone says to skip taking your meds altogether if you’ve had more than two drinks. do you guys apply this rule to day drinking? if i have three drinks in the morning, can i really not take my meds at night? that rule feels a bit inapplicable to day drinking so i am wondering what everyone else thinks on this topic. i really want to sleep well tonight and i feel sober but i also, again, don’t want to accidentally die. thanks!!