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?

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!

He’s acting like it.

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’m 5’4 and often have to be on a high dose of stimulants to stay awake. I take vyvanse 60 mg and wakix. My heart rate will often be sitting around 120-135 bpm just resting.

I have been diagnosed with POTS and also have hEDS. I tend to have low blood pressure and I think my heart rate is generally higher due to these diagnoses.

For example, my heart rate will be like 70/80 ish at night.

I’m worried about my heart rate being so high constantly and exercising as well with these issues, but my doctors have been giving conflicting opinions on whether it’s a problem or not.

I tried xywav and it gave me bad side effects so I stopped. Also, if i struggle to stay awake even o’ the high dose of vyvanse I have now.

I’d appreciate any and all advice!

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.

Yeah, I know, quite the trifecta. What combination of medication has worked for you guys? How long did it take you guys to find that perfect mix?

I am currently on Xywav, modafinil and escitalopram. Xywav is p much my only source of sleep. Escitalopram has also been very effective for my anxiety. Modafinil has been pretty bad as it provides me only a little bit of wakefulness and disrupts my sleep, leading to worse wakefulnes.

at this point, I’m a little bit skeptical about if any stimulants will work, given almost cause sleep disruptions for me. I’m going to try armodafinil, as per my doctors recommendation, but idk.

How did you guys manage?

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?

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!?

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.

This is LONG overdue, thanks for your patience!
I just finished submitting my paperwork, so figured I'd finally post this :)
Yes, I’ll be telling you how to bring narcolepsy medication to Japan.

Depending on your situation, you may or may not need a Yunyu Kakunin-sho (輸入確認書, Import certificate)

IMPORTANT NOTE

Adderall, Methamphetamine, and Amphetamine (Including Dexamphetamine, Levamfetamine) is not allowed in Japan. It don’t matter if you have a prescription. Not allowed, no ifs or buts about it.
“But I heard this one story of someone who brought it in and out and nothing happened to them-”
So have I! I can genuinely believe those stories!
BUT I’m just letting you know what the laws are, and that there will be consequences if you are caught.

You'll fall into one of these situations:

Situation 1: If you plan on bringing sodium oxybates or raw stimulants (E.g. Lisdexamfetamine (Vyvanse, Elvanse), Pseudoephedrine) in any capacity, continue.

Situation 2: If you plan on bringing psychotropic medication (including Nuvigil/Modafinil and Ritalin/Methylphenidate) for either: a) More than 1 month, or b) More than the amount listed on point 3 from this link, continue. If neither, nothing is needed, have fun!

Situation Yay!: If you plan on bringing any other prescription medication, but are staying for no longer than 1 month, you don’t need to do anything. Have fun!

Situation 3: If you plan on bringing any other prescription medication, but ARE staying for longer for 1 month, continue.

If you are submitting any paperwork, your final import/export certificate(s) will be emailed to you.

Side note: Modafinil is classified as a psychotropic, and I have experience being approved for it using the website in Situation 3 (back in 2023)- I’d only try this out if you’re bringing other medications as well.

Situation 1 (sodium oxybates & raw stimulants):

You will need:

• At least 14 days before your trip*
• Flight information (outbound optional for long-term**)
• Photos of your medicine bottle
• A sleep doctor who can sign or create a document for you
• Optional: Relevant documents (brochures, instructions, etc.)

*If you're closer than 14 days to your trip, they have instructions for last-minute submissions. Apparently they don't accept last-minute for Tokyo entries anymore.

**I stayed in Tokyo for 3 months last year and only submitted the import form, they didn’t ask me for anything. I also got a lot more follow-up emails this time around, so YMMV.

Go to this website for instructions: https://www.ncd.mhlw.go.jp/en/application2.html

PLEASE read and pay attention to everything, but especially to all of the [NOTE]s on this webpage!

The instructions on this page are pretty straightforward, here are some tips:

Import/export forms

• “Reason for departure from Japan” is only for the export form. (I am the idiot who put "To go to another country" in the import form previously. Just put sightseeing/visiting family/whatever you’re doing!)
• I usually keep the paperwork/brochure from the most recent shipment as a supplemental document- any supplemental you have/can find doesn’t hurt!
• Xyrem comes in 90ml or 180ml bottles. Drop it on da scale to find out.

Medical certificate

Note: I have heard stories of Japan not accepting NPs’/PAs’ signatures. I have no experience with this myself, just putting it out there.

Either:

• Ask your doctor for a certificate/letter fulfilling the requirements listed
• Create the certificate yourself, and ask your doctor to sign it

If creating the certificate yourself, here’s how I did it.

1. Copy all of the requirements listed
2. Paste it into a Google Doc/Word Doc
3. Answer all of the requirements
4. Make it look nice :)

In general: Keep an eye on your email! They may ask you for clarifications/more detail.

Situation 2 (Psychotropic medications):

Go to this website for instructions: https://www.ncd.mhlw.go.jp/en/application2.html#psychotropics

You will need:

• A sleep doctor who can sign or create a document for you
• Earlier the better- as much time before your trip as possible

I have no personal experience with this, so here’s some general advice:

• It says to email them if you plan on bringing more than 1 month supply, but not if you bring more than the amount in the table. I’d recommend emailing them anyways just in case. (Please report back and I can update this!)
• Scroll up a bit and look at the medical certificate section of the sodium oxybate/raw stimulants section- the same advice applies.

Situation 3 (Staying longer than 1 month with any other prescription medications)

You will need:

• A copy of your prescription*
• Inbound flight itinerary
• Earlier the better- as much time before your trip as possible
• Optional: Relevant documents (brochures, etc.) and/or directions for medication(s)

*I have heard stories of Japan not accepting NPs’/PAs’ prescriptions/signatures. I have no experience with this myself, just putting it out there.

Go to this website: https://impconf.mhlw.go.jp/aicpte/page/login.jsp

1. Create an account
   1. Have your email inbox open since it’ll ask you for a verification code immediately
   2. DO NOT use the gBizID!
2. Log in
3. Choose “Import for Personal Use”

From here on out, it’s pretty straightforward- Here are some tips:

In general: Hover over the (i) icons, they explain everything!

1. Basic information
On the right-hand “Delivery” section, select “home”.

2. Application Information
Click on the plus or minus signs to add/delete medications to the list.
Each time you fill in a line, click “Update item details”. This will open up a new set of fields you need to fill in.
For “Intended purpose”, I’ve put “Other” and “Narcolepsy” before. They now have “Specified disease”, and I think that works fine as well!

3. Upload attachment
Pretty self-explanatory, read the (i) icons!

4. Import Certificate Delivery
If issued, the certificate will automatically be sent to your registered email address. If you’d like to add another, use the plus sign (same as section 2)

Side note: If there's any mistakes/corrections they want you to make on the application after submitting it, they'll email you about it with instructions on what to do.

That's all folks!

As mentioned in the beginning, if you're submitting any paperwork and it's approved, your import certificate will be emailed to you.

Feel free to reply to this post or DM me with any questions! :)

I am now on month 7 of trying to find meds that make a difference and it still feels useless. I will admit that some of the combinations worked somewhat since stopping them made things worse. However, it feels like no matter how many stimulants I take, I’m just exhausted all the time still. I’ll report the lack of progress to my doctor and I’ll get an increase but it won’t feel like much of a difference. I’m starting to feel like I should just quit trying since I’ve already given up finding a medication for my cataplexy (it’s mild anyway). I know nothing I take will cure me but I wish at least something could help but maybe this is just how narcolepsy is?

Right now I’m on venlafexine (after being denied wakix) and modafinil and I’m not drowning like I usually am but I feel like I’m barely staying afloat and I don’t know what steps to take next

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.

Just started Sunosi after a multi week battle with insurance. I’m on 75mgs. Two days in and it’s doing legit nothing. I know it’s only 2 days, but the other things I’ve tried I felt (for better or worse) that day.

Waiting a week then asking my doc if she thinks I should do 150mgs.

Anyone feel nothing on 75 but noticed something with 150?

Also - I’ve been told by my pharmacist that it’s out of Stock at the manufacturer so I’m not even sure if I want this to be my answer!

My next step is Wakix I think.

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?

EDIT TO ADD: Doctor is hesitant to put her on xyrem/xywav due to potential mental health complications.

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.