My husband is type 2 (diagnosed in his teen years) he hasn't been to a doctor in about 5 or 6 years and is essentially just raw dogging narcolepsy and its not going great. He has a job and can drive, he meets those obligations and does a great job... but depending on the cycle hes either insomnia ridden... or asleep all weekend or evening...only awake enough to eat. From Friday night to sunday might he may only be awake 4 hours total... and hes not meeting obligations in the home or time with the family because hes alseep. I have asking aboit going to a doctor probably 100 times, so he can start to address this again, get back on meds or start some kind of regimen, but he ignores it like its normal. Hes not mean or nasty to me about it, but he's very avoidant. I want to help him... but you can lead a horse to water but... you know the deal. How can i be more supportive of him and help him get back on track? He used to be on modafanil years ago and he said that did help him a lot. He seems ashamed of his sleep disorder, which i never shame him or yell at him, I always have a kind approach. But I am running out of compassion here because he knows the issue.. but keeps doing nothing to change it.

I just need someone to relate with for a second haha. I’ve been sick this whole last week with sinus stuff and I have just been so exhausted. I feel so lazy today I’ve been laying in the dark alone and I wouldn’t have it any other way, I just feel so guilty about it. I’ve just felt like my head is stuffed in a cloud this whole past week. I’ve felt drunk. I just need to know if anyone else ever feels/gets this way.

For those who take adderall, what have you found with different manufacturers?

Backstory: We had added 30mg Adderall IR (10mg doses to spread out as needed) to the 50mg Vyvanse I was already taking for my ADHD. At first I could really tell a difference, especially on days I could sleep how I prefer (delayed sleep phase). Now it’s like it does nothing. I can take up to 20mg at once provided I don’t go over the 30mg. Tried that and I might as well have taken a sugar pill 🙃 I switched pharmacies because I was so fed up with my old one so decided to see if the manufacturer had switched. Sure enough it had! So now I’m curious if it’s that versus the meds not working anymore. I’m not interested in most other meds because of various issues with them, so I’m definitely going to go back and see if that does the trick. If it doesn’t, I’m not sure where I’ll go from there. Sleep med doc has a lot of thoughts, ofc, but various life things make some switches much more difficult.

Hello. A year ago I started xywav. I take 4 grams twice a night. I also take 10mg of Adderall twice a day for adhd/wakefulness and 150mg extended release wellbutrin for depression. I was hoping my motivation and enjoyment of life would come back once I started xywav but it hasn't. Things just dont interest me anymore. Anyone have this problem and solve it or maybe I have to tweak something? EDS is basically gone since starting xywav so thats a plus. I just want to laugh like I use too. Thanks!

Hello everyone,

I’m trying to remember when I actually got Narcolepsy. I’ve never had a TBI or any kind of serious infection but in 2021, I lost my son and went through a betrayal by my ex husband and that just ticked me off. I remember especially sleeping for 22-35 hours straight because I thought I was depressed. Fast forward to 2-3 years, I got diagnosed with N1. I remember when I was 19 I used to take 9 classes at the same time, was the president of 3 clubs and did sports and never felt tired. But when I lost my son at 21, everything changed. I became very depressed and now I just can’t find the energy to be like I once was at 19. Can betrayal and trauma cause narcolepsy? I cant imagine that something like this causing a serious neurological disorder.

I found the lump 3 days after my 40th birthday and have 2 very young kids who need their mama present and awake.
Anyone with experience with chemo, radiation, etc while navigating N?

I have Triple positive IDC breast cancer with lymph involvement, waiting on tests to determine staging and rule out metastasis. They saw a spot on my spine during an MRI that is suspicious for bone involvement. It’s looking like I’ll need the trifecta - slash, burn, and poison.

I take Dextroamphetamine and Xyrem for narcolepsy. Many of the hormone blockers also block Dextroamphetamine, and I’m sure Xyrem will have all sorts of contraindications. How am I supposed to make it to chemo if my narcolepsy isn’t well controlled?

Any advice appreciated. I’m in cancer hell, and nobody is acknowledging my narcolepsy as a comorbidity that needs consideration.

And still refuses to put it away and go to sleep.

For some reason whenever I take armodafinil I can't control my appetite. It's not like I'm hungry but rather like an urge to eat anything!. Anybody else experienced this and how this can be managed?

Hello!
I am diagnosed type 1 narcoleptic and I also have sleep apnea.

I am going backpacking in December and I just wondered if anyone had any recommendations for travel health insurance providers?
I have a one way ticket booked.
I have backpacked before pre-narcolepsy diagnosis and getting a health insurance provider whilst still under medical investigation was a nightmare.

I know a lot of southeast Asian countries can be strict about travelling with modafonil aswell (prescription) which I have done as much research as possible but if anyone has had trouble either gaining a prescription/issues at border control in these countries please let me know!
Last time I travelled only with my sleep apnea machine which was not a problem.
I have a letter from my doctor already regarding my diagnosis.
I also understand getting medication abroad can be tricky. I plan to travel to Malaysia, Indonesia, Sri Lanka and the phillipeanes so if anyone had advice on how to refill my prescription that would be great.

Any advice/travel tips or recommendations for insurance would be massively appreciated!

My partner has all the classic symptoms. They also worry about health related things and visit the doctor frequently. They had a home sleep study to check for sleep apnea (nope!) but they are very resistant to the idea of narcolepsy. I've pointed out the symptoms they experience and I'm just brushed off. I've explained that it's not what we are lead to believe like just randomly falling asleep wherever they may be (though tbh they have fallen asleep momentarily at work, while driving, while we were having...adult time etc) but they just dismiss me. I hate seeing them suffer and I hate how it impacts our relationship. I have always known there's something off neurologically but I couldn't put my finger on it. Then I came across some narcolepsy related IG posts and I can't believe how well it explains the unusual symptoms. How did you feel when you were diagnosed? Was it hard to get yourself to get tested? I truly am always looking for explanations and home diagnosing them with all kinds of things because it shows up in so many ways across so many areas of their life and they are just miserable on many days. Due to this, I think I get an eye roll like here we go again with another diagnosis so I do understand, but I can't imagine not running to the sleep specialist to see if it is narcolepsy so that they might actually be able to feel better! Did anything stand in your way of getting tested? Any advice on how I can talk to them about it that they might actually listen? I know they feel shame about napping, about not having energy for things, not being able to wake up in the morning etc so that might be a barrier but gosh the thought that there's help out there...I'm so hopeful. But they have to be willing to go to a doctor and that is a huge hurdle. Advice?

Just venting. The pharmacy has been out of stock on vyvanse for over a week. I am STRUGGLING. This is definitely a crisis at this point; I have a life to live. I seriously feel half dead all day every day. Gahhhhhhh

It was in July when I got to know thst i have Narcolepsey t1. I am 26 years old. It took me six years to figure out what i have. I did not know anything about Narcolepsey before I was diagnosed. I have been taking medicines but it's not working. I use a CPAP machine to sleep that my doctor suggested but still I have disrupted night sleep. I have been having really really bad headaches. I can't travel, my social is disrupted and technically I can't do anything except sleep and that is also disrupted. But now even though I am just at home and not using the screen, the headaches are still not going and I feel really helpless. Have been questioning my existence to live like this. Idk if others are also going through. I just can't help it!

Hi all, I am month 3 of 9g sodium oxybate. I am feeling much more awake, but also struggling in a huge way.

Sometimes when I wake up, while I can't fall back to sleep, my brain remains foggy. I can't make decisions or think clearly. I've returned to work but can't think ahead or remember things and my colleagues always need to be telling me what to do where I previously used to be brilliant and seeing the big picture and keeping things moving.

I do also have ADHD, and am also taking dexamphetamines and modafanil, but I just feel dumber. I get insane task paralysis or am struggling with pretty bad executive dysfunction. I cannot get stuff done at home even when I desperately want to, I just can't start. I am getting pretty anxious because of the above problems. I feel like I'm creating more work for colleagues or my husband than offering any support....

Is this related to sodium oxybate? If it is, will it/can it improve?

Venlafaxine has worked in stopping me from feeling cataplexy, but I've always seen it as more of a dam holding it all back. The one time I ran out of the medication I was in an absolute state constantly crying until I got my next dose and the crying stopped.

Not being able to cry without an almost paralysing wave of cataplexy from withdrawal is really starting to concern me. I've seen my own mother have a full mental breakdown to the point of spitting food and water at me, several funerals for very close family members and a number of other things I hope are the hardest things I'll have to face and I've not been able to cry. I get to the very edge of being able to form a tear and my body just refuses.

To lighten the mood slightly of this post think of it like the worst form of edging with absolutely no pay off.

I want to know if anybody has had the same reaction, and if they've been able to treat it. Any other advice around this would also be greatly appreciated.

Does anyone know if its ok to add a small squirt of Crystal Light water flavoring (I added a pic of the one I have) to Xywav before taking it to help with the taste? I have seen mixed info online about whether it is ok or not. Thanks!

I fall asleep on the couch at 4:30 PM. It's been a flare day and I've already slept for twelve hours. I pass out quickly.

I wake up in my living room. Oh wait that's not my living room and I'm not awake.

I need to be at work in five minutes. I wake up and start getting ready. Oh wait it's a Saturday and also I'm not awake.

My sister is visiting. She announces she's getting married the next day. They rented a private box at a baseball game for $50000 for the wedding. She says this is a great deal. I meet her fiance; he is made of blood.

I wake up in my living room. Someone's jiggling the handle on my front door. Oh wait this still isn't my living room and I'm still not awake.

Now I'm getting married the next day. I don't really want to but since my sister did I might as well. I'm in my childhood bedroom pondering why I'm doing this.

I wake up in my living room. I look around and think okay good I'm actually awake this time. Oh wait no I'm not, this isn't what my house looks like.

I wake up to the sound of rain outside. I look out and see that my landlord has installed a device that jets water off of a tree branch and lands on a sensor attached to the house. I wonder what this means.

I wake up in my living room. Someone is calling my name, they need me to be awake. Oh wait, I live alone and I'm still not awake.

My boyfriend comes over. He is 30 feet tall and made of various colors of blue ribbon. I slide around on the ribbons in a very Studio Ghibli-esque montage. He says he doesn't want to marry me.

I wake up in my living room. Oh I actually am awake this time. I look at my dog sleeping on her pillow.

I wake up in my living room again. Nope, this one is made of goo.

I wake up to my alarm. I ponder for several minutes if I'm actually awake. I poke everything around me several times, including myself. I am actually awake and I can tell because of how badly I want to go back to sleep.

I got my wisdom teeth out last week and took about 4 full days totally off my Adderall and sunosi so I could just sleep as much as I needed when I needed.

I normally take 100mg/ day in total and sunosi 150mg and BARELY make it through the day most days. Have to take multiple naps. Feel like I am only mentally awake for about 45 minutes total for the day, apart from driving (usually a minimum of 2 hours of my day is driving. If I have errands to run its another 2. Driving takes all of my thinking and attention capacity for the day honestly.)

I also had a TBI 10 years and one year ago and lately I have been feeling like...can brain damage from a TBI get worse as time goes on because I can not think. I can read or comprehend. I just felt like a total space cadet constantly. I am disabled but I am usually able to at least do my basic life things like order groceries and get dressed but some days i am so forgetful and it takes so much effort to figure out what even needs to be done or I start and stop due to falling asleep and lose track of everything and it has been causing me to feel depressed and worthless. And hopeless as well.

The last few days though, I feel like MYSELF again and the more I recover from the surgery and a really weird allergic reaction to a steriod...I am realizing that most of my symptoms etc have been due to tolerance.

Today I was awake. I was able to have conversations without "um...what?" To the point where someone just...stops trying to talk to me. I had the energy to form sentences and express myself etc etc and it was so fucking nice.

I have been on Adderall for 20 years now and for the first 15 years I would take tolerance breaks usually at least one day zero meds a week. (This day was my blob day. I slept at least 20 hours and had zero ability to do anything but eat pre prepared food and possibly watch a little stand up comedy and brush my teeth. ) now I am a single mom so I take it every day because I have no other choice. I havent even had to take my full dose one day this week. I assumed within a day or 2 my tolerance would be back because thats how it's gone in the past if I had had a one off day without it due to shortages or something.

It has been so fucking wonderful to keep up with my kid (not necessarily physical energy wise) but be able to pay attention to her pretend play or long winded questions etc.) Even the COMPREHENSION of words and my access to vocabulary has been like what it was in my 20s. And it has been so good. But it also makes me so sad in so many ways because...how can I possibly have more tolerance breaks worked into my medication routine when I require medication to function?

It made me wonder for the people who rotate between stimulants periodically...how do you do it legally and without breaking the rules for controlled substances? Like does taking Ritalin for a month then swapping to Adderall then modafinil the next etc work or does it seem to leave you more unbalanced and forgetful due to brain adjusting to new medication on repeat? have asked my prescriber about switching to see if a rotation would help me maintain more symptom management without needing to drink a shit ton of coffee on top of my meds. If one medication is preferred over another due to no side effects does it still need to be taken for several months in order for a prescriber to feel comfortable or...how does it work for you?

For now I am on baclofen for sleep but eventually I do hope to trial xywav.

Thank you everyone in advance

I have been taking modafinil for about 2 months and my Dr did not inform me that it reduces the effectiveness of birth control (I have Nexplanon). I just found this out from a friend, and when I asked my Dr they said Nexplanon is still pretty good but to use a backup like condoms. Well I have been having unprotected sex this entire time and now am concerned for my risk of pregnancy. I had a negative test last week and got my period after, but recently had unprotected sex again. I am having a hard time finding information on how MUCH it reduces the effectiveness of Nexplanon. What is my realistic risk? I took a Plan B today but I know it can reduce its effectiveness too. What should I do?

I am so tired of being tired. I just want to feel normal again. I go to the store, and after I get home, I feel like I need a nap. If I say I am tired, everyone around me says You're always tired. My boyfriend just said, "You just got up a couple hours ago and haven't done anything to be tired." I wish they really knew how it feels.

I'm working, studying, and managing my narcolepsy, but I'm still constantly tired. I'm outgoing and love being active, but my energy doesn't match my personality. I have a couple of friends but not to many as I get exhausted from maintaining friendships too.

The guy I was dating for the past year didn't want to settle with me because of my narcolepsy. But yeah I was good enough for a “commited situationship”

Since then, I've been scared of dating and knowing when to disclose it, especially since I also have chronic pain.

But finding someone compatible takes so much time and energy that I barely have. And when I explain that I have narcolepsy most people do not really understand what it feels like or that I have less time because of it.

For those in relationships, where did you meet your person? And do you have any advice on when and how to disclose your condition?

I’m 20 now but I believe my onset was around 10 years ago since that’s roughly when the cataplexy started.

I only did my sleep study in may, and after that I started experiencing strange flare ups of hypersomnia where I’ll wake up tired and nap a bunch. I used to sleep roughly 5 hours a night for years and I functioned fine. I’d usually wake up naturally by 8am. During flare up periods, I can sleep for 12+ hours and still feel tired until I take adderall. I truly have to force myself out of bed if I only get 8 hours of sleep and have work or Pilates in the morning.

I’ve been having sleep attacks for years, but those were almost always triggered by things like lectures. I used to rarely nap for most of my life. When people talk abt being tired all the time on this sub, I don’t relate at all as I spent most of my life being pretty normal tiredness wise except for the sleep attacks and the “flare ups” which have only been happening on and off for the past couple of months.

Is this a normal part of growing up with narcolepsy?

A week ago I fell asleep while sitting on the couch. I fell forward and hit my head on the coffee table and then slammed it on the floor. Ambulance was called and I was diagnosed with a concussion at the ER. Has anyone else experienced this? What did you do to mitigate concussion symptoms?

So I’ve been recently diagnosed with Narcolepsy Type 1, i don’t know if any other women experience this but when i get close to having my monthly cycle or I just started it my symptoms worsen and not because i’m cramping or I am in pain because I can get through that. I just generally feel so much more exhausted and can’t concentrate on anything. Usually my partner will have to drive me to work or school during this time because im just too tired and can’t focus on the road. Do any other women feel this way? if so what’s something that helps you during this time if anything at all?