A year ago I was diagnosed with Narcolepsy 2 & now they are leaning more towards it being Secondary Narcolepsy. I do not have Cataplexy. I can’t keep not knowing what to do for this so anything you’ve personally experienced would be very helpful. I’ve got to know what’s causing my brain fog being so bad that I’m in a blurry state all day long, never feeling like I wake up and my memory is so bad that I don’t remember a 30 minute conversation this morning. Would this get better if I stop Sodium Oxybate (tried Xywav & now on Lumryz). They aren’t sure if it was triggered from Covid or a concussion at the age of 44. I had lots of Long Covid symptoms in 2021. They told me it’ll all clear up and I just had to stay patient. I was sleeping about 15 hours a day, insane brain fog, some memory issues, body aches, etc. I kept seeing Dr’s & on Dr #5 he said he thought I had Narcolepsy and insurance drug feet on approving MSLT. During that 6 month appeal process someone rear-ended me at a red light doing 55 mph and pushed my car under a truck totaling the car, giving me a concussion and whiplash and 3 months of physical therapy. I have never dealt with headaches until the concussion and now I get horrible migraines. My memory got much worse and I can’t remember how to do my job from day to day. Yes, things were bad after Covid but nothing like this. My head constantly feels stopped up like I can’t get my ears to pop, I can not retain things I’m told or read, I seriously asked to be checked for early Alzheimers or Dementia. I sleep great on Lumryz but sleep inertia is nonexistent. I do not feel any more awake in the afternoon as when I first wake up. I was offered a VP position 3 years ago and now I can’t do a basic job function that I’ve done a thousand times. I’m zoned out like a zombie 24/7. I’m on max dosage on Sunosi and 50 mg Vyvanse (tried Adderral & hoping this will be better but nothing better after first month). I was on 9g of Xywav so we switched straight to 9g of Lumryz. I was sleeping 16 hours a day. Dropped to 7.5g and I at least felt like I wasn’t falling asleep all day. Dropped to 6g a week ago. Feels same as 7.5g. I feel like my brain is so sedated that the Sunosi & Vyvanse do nothing for me. Dr. Tried to add Wakix and insurance company denied it. I can go back to sleep 30 minutes after taking my morning meds that are supposed to wake me up. I’m at a point now where I’m thinking about coming off of Sodium Oxybate all together. My NEW neurologist is saying he thinks it’s post-concussion issues more so than narcolepsy issues causing everything. Tests are coming but they are months away. I just finally got back to work from being on leave of absence for 3 months. I can’t keep doing what I’m doing because after 1 week back at work I’m accomplishing nothing, stressed about losing my job and insurance and I have to change something. Has anyone stopped Sodium Oxybate and seen improvement with memory, cognitive, receptors connecting quicker? I know 100% that I was doing better and feeling better after COVID when I wasn’t diagnosed with narcolepsy and all I was taking then was 60mg Adderall. I thought I felt horrible then and thought my brain was slow then but it was way better than it is now. Yes, I’ve asked all 4 of my Dr’s. The sleep Dr (pulmonologist) is saying maybe I try 4.5g of Lumryz. New Sleep Dr that I’m trying to transition to because they are a Neurologist thinks the Lumryz is causing my brain fog and making me a zombie. He thinks I have excessive daytime sleepiness but not narcolepsy. I will say when I did my MSLT I was still taking my Adderall and had already started Sunosi. They didn’t tell me to stop taking it so it was in my system when I did the MSLT.

I can’t lose my job because I lost everything including all my savings from the car wreck. I have a higher paying job that I feel like I will never be able to get again. I’ve applied to a thousand jobs trying to find work from home or something where I would have less stress or work less hours but I haven’t even had an interview.

Thanks for any insight!!!

does anyone else get extremely vivid dreams and nightmares, i'm talking not being able to differentiate when im sleeping or awake. i usually can but specifically when i'm sleeping i often have nightmares where i can tell smthn is wrong and i am super paranoid trying to figure out if im dreaming or not, gets to the point where i do things in my dreams like scream(which i end up doing irl in my sleep) or jumping in traffic or from roofs to figure out if im dreaming or not. i never get confused like this when im actually awake, although i do still feel super derealized when im awake anyway, but i am diagnosed with dpdr so idk whats related here tbh lol.

i also get this nightmare sequence where i think im awake going along my daily tasks then suddenly get this feeling of anxiety and realize im dreaming, then i "wake up", do my daily tasks, anxiety and realize im STILL dreaming and its this longgggg cycle where i think i'm awake but theres just something wrong until i realize im actually not awake but still sleeping. happens with sleep paralysis sometimes as well where i wake up with sleep paralysis and then wake up but then a little later realize i just fell back asleep and never woke up, suddenly wake up with sleep paralysis again and once im not paralyzed i think im awake again, really im dreaming and then i realize it again, have sleep paralysis again, etc etc. it's really frustrating and anxiety inducing and it sucks lol. also a lot of the times i have nightmares i'm still half awake and i scream irl and wake up ppl around me from it which has been happening a lot the past 6 months or so, which i nvr used to do a lot but now i scream in my sleep from my dreams or talk from my dreams or move and thrash (i hit my partner one night in my sleep twice from the same nightmare as well) so im just wondering if anyone else experiences anything similar to this or if theres anything that can help with this

ive been on a few different meds for insomnia as well as nightmares, ive had issues with my sleep since i was 13 and my psychiatrists always saw it as just issues falling asleep no matter how much i explain it to them. i thought for a long time my daytime sleepiness was bad bc i had bad insomnia where i wake up every 20mins to every 2 hours (i dont have issues falling asleep) so ive been on meds to help my sleep including diphenhydramine, trazodone, prazosin for nightmares, and this last year i was put on lunesta (finally got across how bad it was) which did absolutely nothing to help lol. rn im on clonidine (?) which i take nightly even tho i feel nothing from it either. ik theres meds to help with daytime sleepiness but fragmented sleep is a huge issue for me so im wondering what there is to help with that and if i were to get that helped if my daytime sleepiness would get easier too.

basically idk if this sounds like narcolepsy cuz i didnt realize how real it was til i started looking into it recently so i need validation and maybe an outside opinion

ive had mental health and sleep health issues since i was around 11-13. i always say my entire mental health journey started with nightmares from 11-13yrs. im 20 now and i am much less alone but much more frustrated at the us healthcare system.

sleep issues started with nightmares at 11yo that turned into sleep paralysis at 13. this branched into other stuff like depression and self harm but underneath it all was the nightmares and sleep paralysis, which at around 15-16 progressed to really bad fragmented sleep (waking every 30mins-2hours every night) which then progressed to really bad hypersomnia but that happened alongside my worsening depression as i went into my first psych hospital for si. this happened at the time i first started getting treatment for my mental health, including therapy and meds. the months leading up to my first doctors appointment i was sleeping from 8pm to 12 pm the next day whenever it was possible and sleeping throughout the day when i had school and other day activities. as my depression worsened i also stopped eating and started losing weight, i started falling asleep randomly in school and also feeling dangerously close to falling asleep while riding my bike to school and even standing outside under the az sun (i rmbr specifically id wait 4 my brother at the bike rack at school standing in direct sunlight holding onto my backpack and feeling my eyes closing and stumbling over almost falling asleep). at the time we all kinda pinned it on the depression as well as my eating, since it was so bad i figured my body was trying to get its energy elsewhere.

ive had a lot of ups and downs since then but the big constant has been my adhd and my sleep issues. i could go into incredible detail about all the issues ive had but this is the basic overview: nightmares, sleep paralysis, daytime sleepiness, fragmented sleep, and sleeping SO damn much. the last two years specifically have been so bad because my mental health issues get better but my sleep stays the same. im so tired every single day no matter how much sleep i get, on my days off i will sleep early (8pm) and wake up throughout the night (i've recorded it - 20min to 2 hour increments of me waking up up to 16 times in 10 hours) and then wake up early to late afternoon the next day (12pm-6pm) and then stay awake an hour or two, nap for another few hours, wake up another few hours and then either nap again or go back to sleep completely for the night.

i had a huge weight change from age 17 to now and i'm mordibly obese and that is all doctors see. i had my first doctor appointment to talk about my sleep a few months ago - i was finally diagnosed with adhd last year and have got those symptoms manageable with adderall. so i thought it's finally time to see what's wrong with my sleep - after describing all my symptoms to my doctor she referred me to a sleep specialist and said i probably have sleep apnea. i know that i don't. i do snore but i have a bed partner with insomnia that sleeps a third of the time that i do, and she would absolutely noticed if i stopped breathing or if i choked in my sleep, anything like that.

i had my appointment with my sleep specialist which was a 30 min waiting room wait and then 5 mins of vitals and then 10 mins waiting for the doctor and then 3 minutes talking to the doctor. he came in with a computer, asked me if i snored, asked me about my self harm scars (obvious self harm scars), and said okay, follow me. lead me to the front to schedule another appointment and i was like ? okay im getting a sleep study done. doc leaves and sec asks me what time i want my appointment and im like ? i thought im getting a sleep study? and shes like yes this is for after to discuss ur results. sleep lap will reach out to u. i said okay and scheduled, got a call a few days later to schedule a sleep study and they ask what time i'd like to pick up the device and i'm like what? i thought im getting a sleep study. and she says yes it's an at home one. and i'm like oh fucking great it's only gunna test for sleep apnea isnt it.

so basically now i have to wait til next month to get my at home sleep study, wait until they tell me no you dont have sleep apnea which the doctor would have known if he had asked me anything other than do i snore, and then wait til they schedule me an in lab sleep study or tell me nah ur just tired. and then i have to keep fighting for my study and it's going to be so so annoying and frustrating and im so frustrated and i hate these kinds of doctors so much. im aware i would have probably had to do the at home one first anyways but i just feel so not listened to and so unheard, its already been months and im so frustrated and i just want to know whats wrong with me and how to fix it.

anyways that was my rant but i also have questions about treatment if i ever end up getting diagnosed with n or ih, are there any stimulants that can be used to treat both the sleep disorder and adhd? because im on adderall and it doesnt affect my sleep in the slightest i still am just as sleepy and sleep just as much at night lol. i just want to know what options are out there and if theres anything i can do while i wait bc i feel like this process isnt going to be easy tbh.

anyways thx 2 any1 that reads this i just wanted 2 lay it all out ig lol. mwah

i’ve been on xywav for about 3 weeks now. before xywav, my average resting heart rate was anywhere from 65-80 bpm. after starting xywav, my resting heart rate sits at about 60 and sometimes gets down to 50-mid 50s. i plan to see a doctor about this because it is relatively low, but did anyone else’s RHR drop from xywav??? i know it can impact your sleeping heart rate, but i’m confused as to why my daytime heart rate has dropped. also fyi, i dont consider myself healthy enough to have the RHR of an athlete so i’m concerned.

As the topic says. My coworker brought some really hot candies to work today. I was feeling kinda drowsy and low on energy when I got to work. Tried one of the candies and it instantly woke me up, feeling energized. Took one every time I needed a boost in doing various tasks throughout my workday. I feel like it's helping me dig through my drowsiness. Might be a today thing, but will buy and try these hot candies for a while now and see if it helps. I'm usually chewing gum or eating some menthol pastilles to help me stay awake, but this is on another level. Anyone else tried this?

Hello!

I've somewhat recently started prozac! My depression mostly manifested as emotional blunting and numbness on top of the fact that I have a dissociative disorder. (I've got quite the cocktail). With both the prozac and appropriate mental health care I've been doing so good but I've noticed an increase in cataplexy episodes.

I wonder if anyone else has experienced something like this?

So I have been using my sleep app for a while but never really looked at the data. What I am noticing is that it's recording me as asleep throughout my day when I'm sure that I'm awake. Has anyone else had this experience? I have N1 and I do have micro sleep issues. It's just strange to see it and I am questioning if I should even rely on the data??

I've really been beating myself up lately over my inability to lose weight. I'm walking at least two miles a day, doing pretty intense kickboxing exercises at least three times a week, I've gotten my night eating issues under control, and I'm eating around 1500 calories a day, at the very least staying under 2000. And I'm just not losing anything. I'm 5'4" and 175 lbs so I'm borderline obese. I'm hungry all the time and feel like I'm running myself ragged, and I have barely lost any weight at all in the past two months which is really discouraging.

My wife mentioned that my hormones and metabolism are probably all out of whack because of how horrendously fragmented my sleep is. I'm going through the process of getting a new neurologist to hopefully get a prescription for Xywav. Will this help with weight loss? I'm feeling really down on myself and could use a little hope.

"I've been considering options like circadian rhythm disorders, narcolepsy, and idiopathic hypersomnia to explain my constant fatigue and sleepiness symptoms, but a strange event from the past makes me suspicious. I've been experiencing excessive sleepiness and fatigue for 8 years. This condition has ruined my life, and I can't find a solution. In fact, the sleepiness symptoms have been present for 8 years, but I didn't think it could be a disease. I thought I was just lazy. Three years ago, I received depression treatment for 8-9 months, but I didn't experience any improvement. During that time, I was frequently giving blood samples because doctors suspected Wilson's disease, as depression could be one of its symptoms. Afterward, it was revealed that I didn't have Wilson's disease, and some of my blood tests showed low levels of vitamin D and B12. During that period, I started taking B12 and D vitamin supplements, and the sleepiness, which I had always considered normal, miraculously improved within a day. Depression also improved alongside it. However, this improvement wasn't long-lasting. I told many psychiatrists about this experience, but none of them had an idea about what caused it. They kept prescribing antidepressants. Afterward, I visited a neurologist, who prescribed modafinil. I was very hopeful that this medication would help with my sleepiness symptoms, but it didn't work at all. Later, I also tried Ritalin and Concerta, but they didn’t help either. Apart from these, I used supplements that could have a placebo effect (like Coenzyme Q10), but there was no effect. These situations make me think that the improvement I experienced with B12 was not placebo and makes me wonder what could have caused it. If it were narcolepsy, I don't think this would have happened because I have never encountered something like this. If it were idiopathic hypersomnia, I wonder why the effect was temporary. There are similar stories in circadian rhythm disorders, but I'm not sure about those either, as I didn’t make much progress with light therapy or melatonin. I would be interested in your thoughts—could it still be narcolepsy, or is there something else?"Actually, I did a ketogenic diet for a while to lose weight, and I remember experiencing some improvement during that time. I've read a few stories saying that it helps with sleepiness, but I didn't know about this back then (I'm talking about 2 years ago). During the diet, I was sleeping between 10:00 PM and 6:00 AM and waking up feeling refreshed.

Is 2 weeks detox from long term stimulant use really enough for a MSLT? Or should I take a longer break to be safe.

Howdy, Quick background: -I (33M) have been dealing with some form of hypersomnia for 15+ years but never sought treatment, thinking that being tired is just part of life -I finally took the first step towards a diagnosis a couple weeks ago after realizing there were hours of my work day I couldn’t account for. -ER doctor initially suspected seizures & medically suspended my license until a diagnosis & treatment plan is made. -Now I’m stuck doing data entry at my job where I was hired to do lots of driving until further notice.

My question is this: will I get my license back if I wind up being diagnosed with narcolepsy or IH? If so, how difficult is the process?

My narcolepsy is moderately well-controlled but Im always looking to feel better. Has anyone tried peptides? I've used intranasal orexin on and off but it doesn't seem to help a ton. I was also considering epithalon since it helps with sleep.

Hi all- I am new to the community but happy to find it. My 16 yr old has had sleep issues since about 7 and after multiple sleep studies and many doctors the neurologist diagnosed him with narcolepsy and prescribed him with Nuvigil last week. My biggest fear are side effects such as anxiety,depression, and suicidal ideation. He was so excited to hear from the dr there was a medicine that could keep him up during class, it broke my heart he has been struggling for so long. Are there any other parents here that have kids on Nuvigil? just want to hear thoughts. or anyone currently using Nuvigil any thoughts or suggestions that you think would be helpful I am all ears. Thanks!

Hello everyone! So I’m on the second day of my actigraphy/sleep diary and I’m curious if I should be sleeping if I am tired, or if I should take caffeine and push through? I’m asking this because I often do this during the midday after school or work if I want to force myself to go to the gym to stick to my routine as it’s either chug the pre workout and go right away, or end up in a 2-6 hour nap 😭. I really do love going to the gym, but would this skew my actigraphy results? It’s not everyday that I do this, it’s only the days where I have other stuff going on and it’s either a nap or gym and there is no other time to push the gym.

Hi all-

I have yet to be officially diagnosed till my sleep study later this month. My dr thinks I have narcolepsy type 1 with full body cataplexy episodes.

Few questions I’m researching if y’all could share your experiences (yes, I’m also reading through posts to find answers)

1. Daytime exhaustion but when I lay down I can’t sleep but I’m too exhausted to do anything. No stimulants or caffeine. Is this common?

2. Even with my adhd meds (adderall) and an energy drink I want to curl up and sleep, like my body is just so tired. Im looking forward if there’s medication that helps this, any suggestions for non medication approach? I have things to do 😂

3. Full drop cataplexy episodes describe what I experienced to a T! Yay. But the episodes have happened when I’m driving or chilling on the couch, so unknown triggers and they only happen once every few months. Does the sleep study put me through things to try to trigger it for them? I think it’s stress that triggers them. Never happened when I’m excited or laughing.

4. Can my drivers license be taken away for N1?

Tysvm!! I really appreciate any responses.

This is mostly a stream of consciousness about my feelings on starting Xyrem, but if anyone has any advice, that would be super appreciated. I’m a 23F with type 2 Narcolepsy and I work from home full time, which I think is all the info that could be relevant. Medication-wise: my insurance denied Xywav and SUNOSI as “not medically necessary” (make it make sense🙄) and I’m on 60mg of Ritalin for the narcolepsy as well. Also, I’m located in the U.S., though having insurance deny narcolepsy medications to a narcoleptic as “not medically necessary” probably gave that away…

Obviously Xyrem requires titration up to the full dose, but nothing felt different about last night other than having to wake up at 4am to take a small cup of disgusting, room temp, salt water. I’m thinking about trying a strategy I saw someone else post about filling your mouth with water and then squirting the syringe in and swallowing and then drinking some more water to wash it down because I was gagging and it took me several minutes both times to take the dose.

I couldn’t even finish the 4am dose (just a tiny bit left in the bottom I couldn’t bring myself to finish) and the whole ordeal of dragging my eyes open and myself up into a sitting position and then taking the dose itself took me 30 minutes and by the end I was wide awake and incredible cranky.

I’m already not happy about this approach because I hate having to limit my life even more than the narcolepsy does. I know that’s a little irrational because this medication could also improve my life, but I just am having a hard time accepting the fact that there are even more limits to what I can do. I’m only 23 and have only felt like I am my age and living my life for the past year and a half or so because I was diagnosed in college and, by the time I graduated, I had found a treatment that worked pretty well for me. Things got even better when my employer’s insurance covered SUNOSI which was life changing for me. Then I changed jobs and lost the SUNOSI and my quality of life went down significantly, but I still felt more in control of things and like I had more of a say.

I guess the bright side is that Xyrem has a short half life and doses can be skipped without suffering significant consequences like with lots of other medications. That gives me some autonomy I guess. I’ve heard that if you skip a dose you wake up groggy and are tired the next day, which makes me laugh because that’s literally every day of my life. Who knows, maybe this medication will be so life changing it will open doors I never knew were even there because I’ve been so tired and I won’t worry about doors that are a little harder to open.

Another thing I’m anxious about is having no control over myself when I’m asleep because of the medication. I trust my partner totally, but I worry about if there was an emergency or I was alone or something. How much does this drug knock the average person out?

I recently got a second job working part time at a small business that’s managed by someone I know. I loved it! I let them know I have Type 1 Narcolepsy and may struggle getting in on time because of hypersomnia and miss some shifts or be late to them. They were really understanding but this week I missed a shift, was an hour late, and today ran late as well. Overall a bad week for me. Today they talked to me and said that they know my absences and tardiness are not my fault and there’s no hard feelings, but they had to let me go. They said they’re not hiring anyone new for the position and that I’m on probation and to contact them in the fall. Just basically said it wasn’t a good fit for me right now kind of thing. I am also worried that by fall and I contact them back they won’t hire me again despite saying it’s just a probation period…..I’m really distraught over this, I thought I could do it. I also feel like they didn’t like me?

I’ve been prescribed Lumryze, but I’m terrified to take it because of side effects. I’m also a 20 year old online college student and don’t want any more of my life and “normal” experiences taken away from me. This condition has turned me into an unreliable, irresponsible, stupid, and unpleasant person. The brain fog is so intense there’s just static most days, I used to be brilliant.

Should I try and contact them in the fall or are they for sure just done with me? Is it time to give Lumryze a try? Have I destroyed a friendship and other new relationships because I got fired?

Thank you for reading my unorganized rant.

I (48F) am so tired of being tired. Meds are minimal help. I don't really have family or friends to rely on. My husband is supportive but he travels for work and is gone a lot. Every day I wake up overwhelmed because of all the things on my ToDo list. I make it a point to try to do some of the things I need to but I just get further and further behind. My anxiety is crippling, due to the overwhelm. Currently, my joints ache and I've had to help my elderly mother and have had minimal sleep this past week. The day to day stuff is so taxing that I can't get to the stuff that has been slowly getting out of hand for the past several years. Some days are better than others but I feel like I'm on a steady decline. The good days aren't as good as they used to be. I used to have hobbies and friends and interests but I don't anymore. My executive function is also getting worse. Really, I could probably use some encouragement. The next couple of weeks are going to be really overwhelming and I just don't have the energy to prepare for them.

Have been in Xywav for a month and 1/2 now. Not enjoying the experience. So anxious. And where I am usually a pretty confident person, feel lots of self doubt. I am catching myself fretting on things I said or did waaaaaay too much. Skittery- nervous all the time. Will this stop or get better? Still not feeling the miraculous benefits I have heard from others.

When your body simply quits up, do you know what it is? My day is going well one minute, and then all of a sudden, I'm forcing myself to function. I feel like I've run out of energy and have nothing more to offer.

I have to push past this when it occurs in public. I crumble when it occurs at home. In any case, I never know when it will happen, which is annoying.

I see so many posts about napping to get through the day and it makes me wonder why naps don’t help me.

While I fight daytime drowsiness most of the day (Sunosi gives me a few good hours in the morning), if I take a nap I am worse the rest of the day - groggy, disoriented, unfocused, don’t feel safe to drive. Often, I also wake up with a headache after a nap.

My current Dr has said treating me is "beyond her expertise" at this point as I have not responded well to Xywav and Modafinil/ Sunosi. I was wondering if anyone has any recommendations for drs in Chicago/ IL? She can give up but as i'm sure you will all understand, I can't!

I just finished an overnight sleep study/daytime mlst. What a torturous 24 hours! I was told by the sleep tech that they got “really good data” and that I should be getting a diagnosis from the sleep neurologist next week.

I really have no idea what to expect. All I know is that I slept during all 5 naps. I am pretty sure I fell into REM during all 5 naps, but honestly I only remember 4 dreams. Of those, only 1-2 were super vivid. Normally I have better dream recall, but it truly felt like the second I slipped into sleep, and began dreaming, they came and woke me up! (Is that by design???)

That’s why it felt torturous … I developed a severe headache midday and took some advil. (I had a triptan at the ready in case I developed a migraine, but thankfully my headache remained a caffeine withdrawal situation.)

The first nap was only 20 mins. The fifth was closer toto 40/45.

I’m so nervous for the results! I hope the data is conclusive. I am on 30mg Duloxotine SNRI; I had been on 90 for 4 years and could only safely taper down town to 30. I hope that despite my medication, my mslt will render a diagnosis. I don’t want to have to go through that again.

I’m so glad I found this subreddit today — so many of your posts helped calm me anxiety throughout the day!

I have n2, I was diagnosed almost 2 years ago, and I’ve struggled w keeping my hobbies ever since my symptoms started getting bad in late middle school. I do have ADHD as well, which contributes to short hyperfixations, but before my sleepiness and energy levels were super low I was a big time artist and writer in my free time, along with gaming. However, as time went on, I stopped creating and gaming and nowadays, even when I have the urge to create, I have no energy to do much of anything besides school (in college full time) and work (part time).

I’m on meds but I have to delegate that time to school and work, so when the meds wear off I’m too exhausted to do anything besides doom scroll and watch youtube/tv. Anyone have any tips for getting hobbies to stick and reserving energy for them? Is this a problem other people have experienced? I’m just sad that the things that I love to do seem to not have a space in my life anymore, and not because of anything other than no energy to do them. I miss playing guitar, drawing fan art, writing stories, playing video games. If anyone has any advice I’d appreciate it. Thank you! <3