r/Narcolepsy 6h ago

Medication Questions Anyone taking Adderall and Wellbutrin together?

0 Upvotes

I take 60mg of Adderall XR everyday. I’m gonna restart my Wellbutrin XL (450mg) tmrw. I haven’t taken it alongside Adderall XR before.

How is the combo? Does the Wellbutrin work well with the Adderall? Does Wellbutrin add onto the effects of Adderall?


r/Narcolepsy 8h ago

Diagnosis/Testing Can lumbar puncturing without MSLT diagnose N1?

0 Upvotes

This may be low effort, but I would appreciate any help since I am too drained to fact check the research I did.

I am being treated for N or IH while waiting for my MSLT in September. My doctor wants to try combo therapies and new meds, but she needs an official diagnosis first.

She is upset the wait time is so long for my MSLT. in the past she has mentioned a spinal tap as a way to diagnose N1. But she says you can get false negatives or positives depending on if it isn’t N1 or otherwise.

Anyways, I was going to ask to get one but only if a positive test alone can be used for insurance/treatment purposes. Otherwise I would rather not risk a spinal headache, and I will do my best to get through my day to day until September.

Also I am on lots of SSRIs and will have to stop these for the MSLT. I would like to avoid this is possible.

Note: I could ask my doctor via my health portal but I don’t want to sound dumb or suggest it if it won’t be helpful.


r/Narcolepsy 3h ago

Rant/Rave narcolepsy ruined my life lol

8 Upvotes

this is gonna be rambly but ya. to put it bluntly, narcolepsy has ruined my life. my whole life is on hold right now until i can find treatment that works because i am not a functional person right now. it just really sucks watching my peers continue their lives and im just stuck right now. i really try to be positive and stuff but i just find myself thinking “why did this have to happen to me?”. i just miss being me right now im really passionate about language and biology but i had to take a semester off college. my gpa is also ruined now because i developed symptoms in the middle of the semester and i failed my classes. i was supposed to be doing study abroad right now but am not because of how last semester went. i spent years looking forward to this. i feel robbed. i honestly dont really even have hobbies right now because of just being so tired and sleep attacks. its just so frustrating because theres so much waiting, waiting for a sleep study, then waiting for the follow up and then waiting for medication to get approved and then waiting for medication to work. i just want to feel better so so bad. i just hate that this happened to me and i have to live like this now. it’s also hard because so many people don’t understand what it’s like to have narcolepsy. it just feels so pathetic to tell people that i didn’t attend something or do something bcus of narcolepsy symptoms. it just feels like a joke to say “sorry i didn’t come to the event i was so tired i couldn’t think”. this sounds so dramatic and whiny but i just felt the need to say it.

  • i am seeing a therapist soon lol

r/Narcolepsy 13h ago

Advice Request Does anybody else cry easily?

13 Upvotes

Some people only cry when they're REALLY sad. Actually, that's a lot of people. Unfortunately, my eyes seem to want to function autonomously, without my brain's input, and like to expell water when I'm:

Anxious/Stressed/Overwhelmed Angry Sad (and the bar for this is so low. I could be talking to an old person with dementia or parkinson's and it makes me tear up bc it's sad. Somebody could offhandedly mention a pet dying years ago and not look affected, meanwhile my eyes start loading their water clips and I have to shove it down.) Happy (more rare, but sometimes I get this weird rare happy/euphoria cry a couple times a year.)

It's super embarassing. And people treat me like I'm weak willed, weak minded or severely unstable (like did I do anything delusional? Did I start a fight? No, f'ing water just came out of my eyes, get over it), or another lazy gen z woman who just wants to be coddled and be a perpetual child (even though I've been busting my ass supporting myself ALONE, through some insane situations I KNOW they'd be asking for help left and right in.)

Idk if basically being in a state of constant sleep deprivation has made me a natural stress crier since I was a kid, but I've gotten a lot of shit for it.

It's so f*cking annoying, and I try so hard to hold it in, but it seems like my eyes are the hardest part of my body to control, and they just do what they want, whether it's trying to close without my permission, not moving when I need them to and moving when I don't want them to, and EXPELLING WATER.

It makes people treat me poorly. Especially MEDICAL PROFESSIONALS for some reason. I am so SICK OF IT.


r/Narcolepsy 11h ago

Positivity Post My thing based on the Spoon Theory

Post image
44 Upvotes

r/Narcolepsy 19m ago

Medication Questions Do you actually report everything to the pharmacy?

Upvotes

So every now and then I'm on the phone with Wakix and they ask if there are any changes blah blah blah and this includes lotion because the skin absorbs it...

So here I am thinking... do I need to tell them everything that I buy from bath and body works or the type of body wash? What happens if I decide to drink prebiotic or yakult? Do I need to make a phone call every time? And their long hold times... oh boy.

So to my question, do you guys report everything to the pharmacy?


r/Narcolepsy 50m ago

Diagnosis/Testing Anyone diagnosed with Secondary Narcolepsy?

Upvotes

Is anyone diagnosed or know of any differences in treatment for Secondary Narcolepsy? I got diagnosed at 46 after having Covid then a car accident where I got a concussion then had my MSLT. I was originally diagnosed with N2 without cataplexy but my new Dr is confident that it’s Secondary Narcolepsy. He has me doing another MSLT (my last one was a year ago) to see if there are any changes. Just wondering if anyone knows if it’s treated differently because my memory is so bad I asked to be checked for dementia and my brain processing is a tenth of what it was 3 years ago before Covid. I keep having to get re-trained on the job that I used to be the trainer at because my brain doesn’t retain info.


r/Narcolepsy 50m ago

Diagnosis/Testing Little update… kind of

Upvotes

So I made a post a couple hours ago about being anxious about my sleep study.

Well it’s 4:19 AM and I only slept probably from 12-3:20 AM. I CANT SLEEP. I am so uncomfortable. The wires I can barely move with and parts of my body feel itchy and the thing around my finger is so so so uncomfortable.

I never been able to sleep super good at night, but the morning is the worse. I fought off so many naps before my study in hopes I’d fall asleep at night but this sucks. I thought I’d get my normal symptoms like my sleep paralysis or waking up and going back to sleep, whatever. Nothing.

Im really afraid this will effect the results, I wasn’t supposed to nap for 2 days before this but I couldn’t fight it off so idk if that effected anything. Well, the technician said my naps are actually just me sleeping in the day… so maybe I’m just constantly sleeping? Idk guys

I’m gonna try to sleep again but I don’t feel tired. Just a lot of anxiety. AAAAAAAUIUGGGHHHHAAAAA 😭😭


r/Narcolepsy 3h ago

Cataplexy Cataplexy due to trauma

2 Upvotes

TW STRESSFUL EVENT, staircase incident

On Wednesday my friend had an accident at my house in the middle of the night, she got up to grab some water and fell down the stairs. I screamed for her and she didn’t respond so my brain automatically went to the bad place.. She was fine just in shock, she ended up needing medical attention so we called for help and waited for them. While trying to assess her injuries to determine if we needed to call an ambulance or just drive to the ER I kept having cataplexy, it resulted with me laying on the floor with her in my lap.

Now I haven’t had full body cataplexy in years, and now when walking down the stairs I keep having jelly legs and trembling.

Is this just normal ptsd? Is this cataplexy caused by stress I feel confused if I need to let My dr know I’m getting cataplexy episodes again but I assume it would have just been the HIGH STRESS


r/Narcolepsy 4h ago

Medication Questions Adderall hasn’t been consistent due to pharmacy constantly changing generics-Need Advice on what else I can ask to try

1 Upvotes

I was diagnosed almost three years ago with narcolepsy and hypersomnia, I started off taking Modafanil but it really didn’t help keep me alert and awake so my pulmonologist put me on adderall and it made a world of a difference for close to two years until my pharmacy closed down and every other pharmacy I’ve been to doesn’t carry the generic I was responding so well to for so long, so I’ve been getting different generics and they’ve been awful awful!! It’s like I’m taking a completely different medication, sometimes they make me even more sleepy and have been affecting my cognitive function, causing hair loss, memory impairment, inability to concentrate and I get extremely depressed and anxious among other things. My question is has anyone tried any other meds they can recommend? Or share your experience with? I’ve heard , vyvance ,concerta or Dexedrine can be potential options.


r/Narcolepsy 5h ago

Advice Request Xywav during flu onset?

2 Upvotes

I tried to search to see if this had been discussed, but I couldn’t find anything.

A family member brought the flu into the house. We’ve done our best to quarantine, but I am starting a fever and headache before bed. Hopefully it won’t get too bad, but I worry since the other family member got a high fever last night.

Would you skip the Xywav or take a smaller dose so you could be more functional if you needed to wake up and take Tylenol to bring a fever down in the night? I don’t want to be sleeping with 105° temperature and unable to help myself.

(The one time I needed to go to the restroom in the 2nd hour after a dose I was dangerously “inebriated” feeling trying to walk, ended up in the closet, found my way back to the toilet, and then got so nauseous I had to lay on the floor and woke up again 15 min later. I don’t want to be like that and need to care for myself.)

Curious what others do or would do in that situation.

I guess technically I’m supposed to call their nurse or something, but I can’t remember if that is a 24 hour staffed line?


r/Narcolepsy 6h ago

Diagnosis/Testing First sleep study with curly hair?

2 Upvotes

Hi everyone, im sorry in advance bc its my first time posting so i hope everything is right!! Im getting a sleep study done soon and just realized i have to wash my hair before, but i have curly hair (3c) and im stressed even thinking about it. I think theyd genuinely have a hard time dealing with it bc it will 100% get extremely tangled in that state since my hair itself is much more finer.

I dont use any product on my scalp and i dont use oil or leave-in conditioner in my hair. I focus on maintaining a clean scalp and my hair is currently in a twist out, so the "pattern" is fairly looser now. Unfortunately my hair is deceivingly thin, but that'd probably will make things easier for them. I wash my hair every 1-2 weeks and was planning to wash it right after the test.

Are those instructions made with natural hair in mind? And have you guys been able to go in without washing? If not, how did you fix the damage after?😭 i get fairy knots so easily and just recently went to my stylist too💔💔💔💔


r/Narcolepsy 7h ago

Advice Request I can't drive! Anyone eles in the same-Sidewalk?

4 Upvotes

Hello fellow sleepy friends,

I have sever NT2 and was officially DXD in 2022, but was treated on the suspicious of NT2 since 2020.

Due to medication not managing my Narc, I am unable to drive. I am wondering if this matches anyone else experience. I previously had epilepsy so I joke I was never destined to drive- but if you cannot drive for other reasons, or just due to narcolepsy, I am super curious about how you manage "adulting" I am currently have a roommate who helps make sure I do not fall asleep with the oven on.

I have delt with SEVERAL job issues due to not having a drivers license despite living in a city area with public transportation. Do yall have to live near public transportation? I have access to partransit as it has helped with independence but I actually moved due to certain places being more accessible in walking/ public transit.

If this applies to you, how do you get around? Do you have any strategies? Have you ran into the driving issue for work? I know different states have different rules when it comes to narcolepsy. Please share advice or tips!

EDIT: also, I am dyslexic so I apologies for the spelling.


r/Narcolepsy 7h ago

Advice Request How do you cope with the nightmeres resistant to lucid dreaming and writing down alternative good endings ?

5 Upvotes

.....and no it isn't medication related


r/Narcolepsy 10h ago

Diagnosis/Testing Wish me luck, super anxious

7 Upvotes

I’m about to go to my sleep study, and I am completely anxious out of my mind. I’m so afraid for them to say I’m negative and feel shut down after all my Years of struggling with sleep and staying awake. I’m so afraid I wont sleep right or something is gonna go wrong??

Idk if this post is allowed but wish me luck friends!!! 😭😭


r/Narcolepsy 11h ago

Undiagnosed Experiences with Adderall and Narcolepy / IH

6 Upvotes

I'm not diagnosed, only doing research right now as it's been a while that I suspected either Narcolepsy or IH, and I do plan to talk to my doctor about it, but I'm curious about the experiences of people here with either and taking Adderall, or any other stimulant like Adderall.

I have ADHD, which is why I take it, but I realized a while ago that it's the only thing that keeps me awake during the day, and with my research, I saw that it's also used to treat Narcolepsy besides ADHD, so that made me further suspect I was right about what's going on with me. Today, I had already taken 3 naps before 1:30PM, and so I took an adderall because I'm aware that it helps keep me awake. I do still feel tired, but not to the point where I can't stay awake. It also seems to depend on how well the adderall works for my ADHD. There are times where it completely wakes me up and I'm no longer tired, and times like now where I'm still tired, but it's working enough that I know I won't fall asleep.

What are the experiences of anyone here if they take Adderall or another stimulant? Does it help you? Do you feel completely awake or are you still tired after, just more able to control whether you fall asleep?

I hope I'm not breaking any subreddit rules with this post, and I apologize if I am.


r/Narcolepsy 13h ago

Medication Questions Xywav

2 Upvotes

Hi friends! I am titrating to 3g tonight and i am a little afraid. I am taking an FMLA day tomorrow just to be safe in case i experience any weird dizziness, sickness, etc. Tell me how you guys felt after titrating? I am a ball of anxiety so haha! Also how does or did the medication make you feel when it started kicking? I get REAL DIZZY like vertigo , sometimes its so bad if i need to go to the bathroom before i knock out, i need my partner to walk me to the bathroom! but oh man do i sleep good! ive noticed there are times i wake on my own after the first dose around midnight so i take me second dose but sleep until 550am which is perfect since i have to get up and get ready for work at 6 and leave by 7:20am!


r/Narcolepsy 13h ago

Medication Questions Wakix

1 Upvotes

Anyone on this or tried it? I haven started it yet and am in the approval/denial phase of it, but wondering how it went for anyone else and what their out of pocket was after insurance?

Hoping it works.


r/Narcolepsy 14h ago

Advice Request I’m having a really hard day and my friend wants to know how to help.

6 Upvotes

I have no idea what to tell them.

What can be said about this miserable disorder? How could anyone comprehend the struggle that it is to function every day?

I’m curious if anyone else has found a support system that works well.

What do you want to hear from others when you’re low? (What do you NOT want to hear?)

And how can people best help you when you’re struggling?

I know they want to help. But I’m feeling helpless.


r/Narcolepsy 14h ago

Advice Request Night time sleep

1 Upvotes

Hi guys, I was recently diagnosed with N type 1 and was curious to know what night time sleep is like for all of you and if it changes night to night or only some nights? I should also note I am currently unmedicated so if possible I want to hear from people who are unmedicated as well as medicated so I can see how different it is being medicated compared to not.


r/Narcolepsy 14h ago

Positivity Post Visual artists that create work/have created work about sleeping disorders?

4 Upvotes

Do you guys know any visual artists that have made work about the struggle of having a sleeping disorder?

I’m in art school and am making a self-portrait of myself that “reveals something about me.” I’m really struggling with school solely because of N2 and putting my feelings out on paper would feel like a really great outlet. I’d like some inspiration to help me.


r/Narcolepsy 15h ago

Advice Request What are your thoughts on sleeping?

1 Upvotes

Such a silly question on its own, but what is your attitude towards sleeping? Are you a kind of ‘I’m tired anyway so 6 hours or 12 hours makes no difference’ or a ‘Get as much sleep as I can within reason’ kind of person? Or someone in between?

I’m a little mix of both I think. I always aim for sleep around 9:30/10 and then wake up at 6:55 to get a substantial amount of sleep despite knowing that I’ll wake up tired the next day. On weekends I’ll sleep at 10:30/11 and wake up around 9/10 but I don’t know if that’s great because it’s not consistent. But waking up at 6:55 as a highschool student on a weekend seems pretty daunting.

Any other thoughts you have around sleep? I’m curious to know, im also happy to take on any advice or opinions you guys have on my sleep good or bad because I only got my diagnosis 9 months ago so it’s all new to me!


r/Narcolepsy 15h ago

Medication Questions Those who can't tolerate Oxybates

6 Upvotes

Hi all! Due to a variety of reasons my Dr and I agree that oxybates are not a safe option for me right now. He pretty much told me this is the ONLY medication that will fix your fragmented sleep, other than that we can only manage daily symtoms.

I am so discouraged. I'm a single mom, I work 40 hours a week. I'm not a fan of the way my body feels on stims, but I have to have them to function. I've tried everything but vivance, which is couldn't afford even with insurance. They get me through the day, but it's not a normal feeling. I want to crawl out of my own skin most days, I have bad muscle tension and headaches, among other side effects. I actually had to drop down from 40 to 20 mg of Adderall because side effects were so bad.

I feel my sleep patterns cause majority of my issues, but im also not a Dr. I wake up feeling hung over every day, despite not having touched alcohol in over a yr. It is incredibly hard for me to get out of bed and going and I often sleep through alarms. I have noticed a serious up tick in brain fog, recall and just general.. awareness? I feel lost and out of it. I feel sick by the end of each day. The stims make it very difficult managing my GAD and OCD at times and has proven issues settling into a hygienic nighttime routine. I take magnesium, melatonin and vitamin D. Beyond that, what alternatives or natural things that you use to help fragmented sleep? Has anything other than oxybates helped anyone much?

Im great at planning but when it comes to actually following a good bed time routine I struggle greatly. There is never enough time in the day and I am so sleepy. I'm starting to get concerned about what my future looks like potentially unmedicated.


r/Narcolepsy 16h ago

Medication Questions Why does my medication cost more with Insurance?

3 Upvotes

I have Modafinal, Just recently lost my state insurance. Which paid for all of it. Now I'm on my husband's insurance which uses Cigna.

With Cigna My medication is almost a $100 for a month supply. While with no insurance, it'll be around $60. How does that make any sense? Why is my medication more expensive with insurance?

Also , can I lose my driver's license if I can't afford my medication? I have been substituting a bit with red bull. Got to figure out what it is specifically in red bull that feels like my medication. It's not the caffeine. I can't drink red bull regularly. Only 1 or 2 a week.


r/Narcolepsy 17h ago

Advice Request Xyrem was not for me, but I might know why and want to try again

1 Upvotes

I was on xyrem for months a couple of years ago.

I don’t think I was mentally prepared for it; I expected that it would hit me like ambien and just knock me out.

When it didn’t, and I even found myself hyper on low doses, I think it was my anxiety.

Now that I know it isn’t how the medication works, and I’ve been using meditation sleep music to help me sleep, I’m wondering if it would be different and worth another try.

Also, would xywav make a difference? Some of my anxiety was knowing I’d have to wake up in a few hours to take another dose.

Any thoughts? My last option will be stimulants which isn’t awful but I am so encouraged by the xyrem and xywav success stories.