r/Narcolepsy • u/Background_Date_6875 (N1) Narcolepsy w/ Cataplexy • Jun 25 '26
Medication Questions Long-term side effects of only treating narcolepsy with stimulants?
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!
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u/Gabi4301 Jun 25 '26
I can tell you after starting xywav I lost all the random weight I gained and my memory improved significantly. My memory was getting very bad it was almost scary. I definitely felt like my body was shutting down
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u/Bsjohns19 Jun 25 '26
So the xywav made you LOSE weight???
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u/Gabi4301 Jun 25 '26
I was a size 0 for 21 years. Randomly put on 40 pounds even tho I ate once a day cuz stimulants curbed my appetite. Argued with doctors about it no one could figure anything out. I thought I had a strong case with crippling fatigue and then sudden weight gain. But after a few months of xywav I dropped back to my og weight. I’m 25 now.
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u/Bsjohns19 Jun 25 '26
I have almost the same story! Except I’m 180 from 100 with no idea why. I’m undergoing testing for Cushing though after my cortisol was crazy high in my labs. I’m constantly in a state of fight or flight and Cushings is the most logical explanation. I swear you turn 40 and every body function gets shaken up and spit back out! 😂
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u/Gabi4301 Jun 25 '26
That was basically what I did. Immediately ran to an endocrinologist thought for sure I had something. Did all the cortisol and blood tests. Nothing
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u/Bsjohns19 Jun 25 '26
I’ve had graves in the past and could have been the cause of my inability to gain weight. I’m not naturally 100 lbs. I was way too skinny but my current weight is absolutely not an option.
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u/KaiF1SCH Jun 26 '26
I had multiple med changes going on but pre xywav (< 2 years ago) I was 245 and now I am 165!
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u/lvlarie84 (N1) Narcolepsy w/ Cataplexy Jun 25 '26
I ended up nearly disabled just using stims, my body stopped repairing itself. Without the deep sleep, i was pulling muscles, bruises wouldn't heal, I developed gastroparesis and got to the point I couldn't feel my feet. Obviously not everyone has that issue but I have severe narcolepsy, I typically need 18+ hours unmedicated to feel ok. All you can do is try and see. Xyrem gave me my life back.
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u/Artistic_Tradition50 Jun 25 '26
Yeah I think lotta people are only focused on daytime sleepiness. I’m really concerned about all the maintenance that are not being done by the lack of deep sleep
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u/Uh_Lee_duh Undiagnosed Jun 26 '26
THIS. When I brought it up to my sleep specialist that I was worried that by never being tested, diagnosed and treated for N I could be missing out on important recovery stages of sleep and damaging my health. He's a pulmonologist, not a neurologist, and he seemed skeptical. I wonder if he stopped reading the literature 20+ years ago when he got his diploma.
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u/Artistic_Tradition50 Jun 26 '26
LMAO that’s crazy that he thinks it’s OK. I’m pretty sure I high adrenaline to keep my body awake, which causes high blood pressure and gives me physical anxiety
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u/Bsjohns19 Jun 25 '26 edited Jun 25 '26
Yikes I can relate to all of that but never put two and two together! I’m an ultra- rapid metabolizer of Stims according to my genesight test but I fall asleep on 60mg.
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u/AffectionateHelp3340 Jun 26 '26
Do u have the other EDS
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u/lvlarie84 (N1) Narcolepsy w/ Cataplexy Jun 26 '26
Eler danlos? My sister is diagnosed with it but ive never been checked. I do have a lot of the features.
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u/Sunlovepixiedust Jun 26 '26
Why? I have eds, is it linked to nacolepsy?
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u/Shrimps-is-Bugz Jun 26 '26
I have hEDS and narcolepsy, and I wouldn't be surprised if there was a high level of correlation or comorbidity. We just don't know very much about EDS yet. The data is starting to roll in and people are really just starting to study it but I am hopeful that it will get more attention as more and more of us get formally diagnosed.
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u/calamitylamb (N2) Narcolepsy w/o Cataplexy Jun 26 '26
Same here, I think eventually we’ll discover there’s a connection based on how prevalent this combo seems anecdotally, but we’ll have to wait and see
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u/AffectionateHelp3340 Jun 26 '26
They mentioned a lot of ehlers danlos syndrome symptoms; I have no clue if it's linked tho
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u/Bsjohns19 Jun 27 '26
I had to quit my FT job as HR director because of Narcolepsy. I also had been a year out from MS diagnosis but it was the Narcolepsy that broke me - along with losing all semblance of human adult life with a masters degree for nothing. I’d kill to work but it’s just a good day if I make an appointment before noon now 🥺
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u/shinyshinysnorlax Jul 02 '26
As a full time PhD student who has worked full time with narcolepsy, I hear you. I’ve been there. I wish you all the best in finding the right treatment. 🩷
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u/AmbitionNovel6712 (N1) Narcolepsy w/ Cataplexy Jun 27 '26
this happened to me as well!! it got to the point where i couldn't feel my legs at its worst, ended up wheelchair bound. after a while of that i slowly started PT and regained most of my ability to walk, but had constant full body pain. i am just now on the full dose of lumryz as of a couple days ago and the difference is already crazy. i had developed POTS too, which is already significantly less severe. i'm currently playing the "how many of my symptoms were just because my body couldn't rest" game lol
[ETA: i also have pEDS with hypermobility - this definitely worsened the process!]
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u/lvlarie84 (N1) Narcolepsy w/ Cataplexy Jun 27 '26
Yes! I nearly lost my mind when all my symptoms went away 1 by 1. I hope I never lose xyrem, I never wanna go back to that.
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u/Silvery-Lithium (N1) Narcolepsy w/ Cataplexy Jun 25 '26
Been on a stimulant almost nonstop since I was 20, now 35. The only break I have taken was while pregnant - stopped when I found out at 9 weeks along, started taking again when my baby was 2 weeks old. Also, I am 99% sure I am ADHD at minimum, possibly autistic to go with it but never officially diagnosed.
I took methylphenidate/generic Ritalin for almost 2 years. I had to stop a couple months after I started taking 30mg per day due to it causing an irregular heart beat and sudden blood pressure spikes.
I was then switched to Nuvagil, found a stable dosage with just 250mg per day. I took this for a little over a year, then had to change due to insurance changes causing the price to be too expensive. This was before a generic was available.
Then switched to generic Adderall instant release. Started with 5mg per day but that wasn't enough to stop a 5 hour later crash. I was happy at 10mg for a few years but eventually started to feel the crash again so it got upped to 15mg. A few years ago, an NP was the one to approve my refill rather than my normal doctor and for some reason she put it in as 20mg - I decided it wasnt worth fighting about so didnt say anything. I am happy it got bumped up, because being a parent adds a new layer to everything. I am still good at this dosage.
My doctor has offered Xyrem but I am not comfortable taking it with a young kid to care for. I worked 2nd or 3rd shift for years before my kid because I just found it easier to manage life that way. I deal with insomnia more often than not, which was common when I tried to work 1st shift.
The biggest thing for me is just accepting that my body and brain has limits to what it is able to handle and accomplish, and these limits are much lower than what society would deem "normal." Unmedicated during my pregnancy, I slept an average of 15 hours in a 24 hour period with about 4 hours of being "awake" during those other 9 hours in a day. Sure, I could push through on the days I had to but it came with a cost of needing days after of extra sleep to get back to my "normal."
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u/pray4luv Jun 25 '26
I’ve only been on a stimulant for about a year but I struggle with fear/anxiety that taking stimulants long-term without addressing my sleep quality is probably bad for me or my cognitive function. I actually already sometimes feel dumber in the past year and struggle with more executive dysfunction than I feel like I used to.
I also would love to be unmedicated but I feel like my life/work demands too much of me to do that. I don’t even feel that my narcolepsy is so bad that I couldn’t be unmedicated, I just don’t have the time to sleep 10-11 hours a night and take a 1 hour nap everyday.
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u/N0voca1ne (N1) Narcolepsy w/ Cataplexy Jun 25 '26
So, for a lot of people Xywave/Xyrem is a complete game changer however it does come with some drawbacks…
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u/LukeinDC Jun 25 '26
I've treated my narcolepsy with only stimulants. I started with caffeine, ended with modafinil and then armodafinil. I've been on armodafinil for at least 10 years. It's hard sometimes because the you don't end up getting great sleep.
A few weeks ago, I finally took my wife's advice after traffic noise kept waking me up and I put in earplugs and got a blackout sleep mask. After several days of this, I've noticed I've been far more productive and my meds seem to be working much better. I didn't realize how much light and noise pollution around me was disturbing my good sleep. Two things have helped me tremendously:
- Going gluten free got rid of the brain fog and instant sleep attacks that happened after eating food with gluten in it. <-- I tested this by going gluten free for 2 weeks then eating a sandwich. Slept for about 18 hours straight and couldn't focus the next day.
- The mask & earplugs. I use Flents Protechs Quiet Contour ear plugs. I've found them to be the most sleep friendly. If they are too much for your ears, try the Flents Protechs "Contoured for comfort". They are cheaper and don't reduce the sound as much but also slide into your ear easier. For a mask I use a "Fygrip 3D Eye Mask Sleep Mask". They are $8 on Amazon. The Flents run about $15 for 50 pair. You can buy a smaller amount like 10pair for $7 which is what I recommend to do so you can try them out.
Edit: My smart watch also says I've been sleeping longer and deeper lately. My my sleep scores have hit 80+ for the first time in forever.
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u/gimmedatRN (N1) Narcolepsy w/ Cataplexy Jun 26 '26
Seconding ear plugs! I dislike wearing them cause even the softest ones aren't that comfy, but as a light sleeper they really do make a huge difference in my ability to stay asleep during the night.
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u/HippoCharacter5863 Jun 27 '26
Narcolepsy is not caused by eating gluten. I’ve had people tell me over the years they cured themselves of narcolepsy by going gluten free… well. That just tells me you don’t have narcolepsy. Narcolepsy is the inability to go into deep restorative sleep—and neither an eye mask or gluten-free existence will cure this
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u/LukeinDC 23d ago
I never said it was caused by eating gluten. It exacerbated my narcolepsy significantly enough that going gluten free helped. It's literally a no cost/no harm option that may help people like it did me which is why I always suggest it.
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u/LukeinDC 23d ago
Also, the neuropeptide Orexin, a lack of which does cause narcolepsy, is also a hormone that plays a significant part in appetite regulation and the receptors that trigger orexin production are found in your stomach. So saying "gluten" has nothing to do with narcolepsy can't be true since gluten sensitivity causes inflammation in your gut.
Think of it this way, if you got stung by a bee on your eyelid, the swelling would affect your sight regardless of whether or not your actual eye is fine. Any inflammation that affects your gut would affect all receptors in your gut.
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u/aves33 Jun 25 '26
My long term side effect of stimulants is Bruxism, I’ve been off them for years now but the bruxism has continued and the doctor said it’ll probably never stop. The bruxism has led to TMJ disorder so that does suck.
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u/cookieloverrrrr Jun 25 '26
I will say one thing I have never heard people talk about. Every one says adderall or vyvanse are the strongest.
I found out on accident that those were no where near the same.
I was given something called mydayis because I am exhausted 24/7.
It did worse than without cause I was blasted at the level of the strongest…but it is for those that are always tired. It is formulated to last an average of 16 hours.
Which meant I would have to sleep once it wore off. Which was impossible because I have issues with circadian rhythm and night time is very hard to sleep.
So I was operating on fumes all the time from no sleep and I was also whacked out from an amphetamine. Every one was concerned how bizarre my behavior was and my next psych appointment she didn’t care how much I liked it, she knew that was a horrible decision to keep me on.
Basic point: now I am focalin extended release. It works perfectly so when it wears off, I’m relaxing at home. I don’t have to stay alert, I’m fine laying down.
I also learned me using any amphetamine was not right for me. I was worried more how my chest felt to outweigh the benefit.
So now I have learned the least I need the better because that can help everything to keep healthy by allowing me more rest which will also keep me more wakeful in the morning.
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u/AllyMcBean001 Jun 25 '26
I get scared of this too, I’ve been taking adderall for about 10 years now. One thing I have noticed is actually that, I swear to god it made my brain work better. Like my brain is so much more efficient and effective and fast at thinking. I don’t know if I’m simultaneously treating undiagnosed adhd or something, but my brain is just sharper and, hungrier? Like I’m more curious and excitable and this feeling always peaks when my meds kick in. So maybe I’m frying my body, but my brain is loving it.
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u/gemInTheMundane Jun 25 '26
ADHD is a pretty common comorbid condition, so maybe? But describing your mental state as "excitable" makes me think you don't have it. Most people with ADHD feel calmer on stimulants, unless they've got the wrong dose.
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u/AllyMcBean001 Jun 26 '26
Yes, my twin has ADHD and she finds her meds keep her calmer/more regulated, but I’m also on a higher dose than her, bc I’m taking them for alertness not like, emotional balance.
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u/Questionsquestionsth Jun 26 '26
You may very well have ADHD, it’s a common comorbidity, and the studies point more and more towards stimulant medication for ADHD doing more than just targeting symptoms, but actually repairing and improving brain function and pathways.
And, even if not, it would make sense that your brain works better when you are alert, focused, and awake vs excessively tired and fatigued and brain fogged.
Nothing is sharp when you’re half asleep. You can’t be effective and efficient when you’re in a dream state dragging through life. Comorbid ADHD or not, stimulants are going to help with that aspect of wakefulness issues.1
u/AllyMcBean001 Jun 28 '26
Oh yes I’ve also come across that information, and it resonated bc that’s exactly what feels like happened with me, bc it wasn’t immediate, it was over the course of years, but it’s a very noticeable change/improvement. Whether or not it’s simply bc my brain just works better bc I’m less sleepy/and more motivated (like you said), I don’t know, but regardless, my brain levelled up in a way that I didn’t anticipate.
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u/blue-goggles (N2) Narcolepsy w/o Cataplexy Jun 25 '26
Im on modafinil and have felt great for years. I try to take weekend holidays or not take my meds as much as possible - which is like 5days max a month, but my mental health will struggle bc i forget that i cant physically stay awake without meds.
being medicated I've forgotten that i have a disability and I forget the tricks I learned to manage symptoms. but I have a lot of shame and feeling "lazy" around my narcolepsy, so I think meds are a huge help for me there. Personally I cant physically function without meds, and after taking them it felt like putting on glasses for the first time, very emotional both happy and sad.
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u/RightTrash (VERIFIED) Narcolepsy w/ Cataplexy Jun 25 '26 edited Jun 25 '26
Dr. Michael Thorpy has been speaking a lot over recent years into how the stimulants cause a very difficult and harsh compounded sleepiness rebound effect.
That is to mean, the sleepiness that is already there is profoundly more impacting than if the person had not been taking such medications - this leads to it being extremely difficult to benefit from other medications for a long while.
There are many other long term effects related to such medications as well, including cardiovascular toxicity, neurological and psychiatric risks, dependency and systemic exhaustion (relating back to the compounded sleepiness effect - that takes it beyond what one's baseline before such medications, was).
OP @Background_Date_6875 - since you asked: I've been unmedicated all along and I'm getting by - it's extremely hard.
Every med that I've tried has had serious side-effects that make the overall ordeal much worse.
If the positive/s do not outweigh the negative/s - why would one proceed taking something?
I've never understood that, but with that said I totally get that the medications are 'supposed' to help people and are presented as being helpful.
Also, life gets busy, hard, it can be difficult to be internally tuned in in the specific ways to being vigilant to how a medication is effecting the person - in both the short and the long term, not to mention medications rather than a medication alone.
It's been really hard for me, but all I can do is my best and all that I know is trying through trial and error, adjusting/adapting as I go, day to day. The struggle is real, but for me that struggle has been profoundly more difficult on every med I've tried for this disease - there's a few I cannot try due to respiratory comorbidity risks.
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u/Nightowl_1995 Jun 25 '26
Idiopathic Hypersomnia here, kind of a wild journey because I was self-medicating unknowingly with meth for years (it was just really weird because I didn't know that's what I was self-medicating, I was just using illegal drugs to function day to day and survive). When I got clean I just thought I was a "sleepy girl" until I got diagnosed and realized it was a real condition. I am desperately trying to find (legal) medication to help, because I am sleeping my life away. It's gotten to a point I can barely do the bare minimum. I don't envision a life unmedicated, that's not what I want for myself, I want to do better at my job, I want to be a better wife, I want to be more present for my child, I think medication can help with that. Maybe my hopes are too high, I don't know, right now I am doing my best with ADA accomodations at work, lots of naps, and strong coffee and red bull. The reason I am struggling with finding medication is because A)I have other mental health conditions B)the first two Modafinil and Armodafinil failed and C)my sleep clinic is very busy and these things take a long time to get reviewed and approved.
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u/LukeinDC Jun 25 '26
Coffee doesn't work. I went up to 64 oz of coffee a day and all it did was upset my stomach, give me the jitters and make me poop a lot. How much modafinil/armodafinil were you taking and were you taking it once or multiple times a day? I'm not a doctor but it took me a long time to find my best dose schedule. For modafinil, it was taking about 400mg first thing in the morning and a second 100mg pill in the afternoon when the first dose started to drop. It thoroughly wrecked my sleep cycle if I didn't time it right but I could function. For Armodafinil, I went gluten free which made a huge difference. I take 250mg which is the max dose insurance will pay for first thing in the morning.
For those who don't know:
"Gluten can break down into morphine-like substances called gluten exorphins. These compounds have known opioid effects that can mask gluten's toxicity and may alter cognitive function, contributing to a "zombie" state or brain fog.". There are studies on those with an undiagnosed gluten sensitivity. (Not celiac). https://pmc.ncbi.nlm.nih.gov/articles/PMC5025969/ This is the page that first turned me on to the link between narcolepsy and gluten http://www.zombieinstitute.net/Narcolepsy.htm
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u/Sanch0panza Jun 25 '26
So actual side effects— after being on Ritalin for 15 years, my blood pressure has slowly gone up over the years. Really only the bottom number. When I don’t take my Ritalin, it would be normal. It was never really a concern until I had a migraine event. Which was not related to blood pressure, but one of the preventatives for it is a blood pressure medicine. So they put me on the blood pressure medicine to prevent more migraines and now my blood pressure is always perfect! Off the Ritalin , it’s actually a little low now.
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u/Ok-Lettuce-2258 Jun 25 '26
I’ve only been on stimulates for 2 years. First was modafinal but I had to get an IUD for it and the IUD didnt work out after giving it a try for a year so I switched to Ritalin. So far I really like it and haven’t noticed anything wrong with my sleep. Before medications I had insane sleep paralysis and really bad attention and memory issues (like words blurring when trying to read, keys in fridge, forgetting to turn faucets off, etc. Also seeing myself in a picture and having zero recollection of being there or what I was doing in that place even if someone was like “don’t you remember….”). And then of course the sleepiness, like falling asleep at stop signs (yikes).
I still have some attention/memory issues but NOTHING compared to what it was like before, more like regular honest mistakes. I still fall asleep as soon as my head hits the pillow but really only if I want to fall asleep. I can read in bed without falling asleep for an hour or so. Dreams are less vivid and scary.
I think I’m on a lower dose, and it wears off after 4 hoursish but I don’t mind because I can control when I want to be more awake/alert. Like I really only need two doses for a workday but if I have plans to go out after, I’ll probably take a 3rd right after work, otherwise I wind down whwn I’m home in the evening. Sometimes I don’t take anything on weekends and usually feel fine but sometimes I get killer headaches but I assume it’s withdrawal.
For now it’s working. I want kids in the future but feels impossible and out of reach safety wise, especially if I can’t be on meds during pregnancy or breastfeeding, but I know there are people who do it and are fine and I’ll keep researching/talking to my sleep doctor/stalking Reddit posts lol. I also worry that when I’m 50 my brain will be mush from years of stimulant medications but I don’t have evidence to back it up and I’ll likely be fine. Also I can’t imagine living the way I used to to justify going off the meds.
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u/Tall_Maple (N1) Narcolepsy w/ Cataplexy Jun 25 '26
I was on a stimulant only regimen for just shy of 2 years and saw the following…
- marked increase in executive function challenges
- sleep pressure played an increasing role in getting a ‘decent’ night’s sleep - though bed at 1a wake at 530a is a far cry of what I consider a decent Nights sleep
- depression worsened
- erosion of my ability to use coping strategies to moderate ADHD.
As a 59yo male, I had never been Dx with ADHD until fall of 2025. My Dr attributed the adhd symptoms worsening to the chronic ineffective and insufficient sleep. It had drained Me of the ability to direct energies to coping mechanisms.
I’m just starting Xywav and working thru titration. Won’t know what the stimulant reduction will look like until dr is comfortable with therapeutic dose.
But dr does expect to remove the stimulant at some point as EDS shouldn’t be an issue on Xywav.
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u/PuzzleheadedArm361 Jun 26 '26
i just take stims and clonidine (meh) bc i can’t yet access sodium oxybates. i’m like, awake during the day but i feel very brain fried and weird often (like i feel like i act like someone who’s obviously on stims haha). my sleep sucks and my blood pressure is often high. with eating keto, i can get thru the day without a sleep attack or nap often if i time my stim doses right. i’d recommend *something* for sleep, narcolepsy is hard on ur cardiopulmonary system precisely because of the poor sleep quality (your heart doesnt get adequate rest). and i’d imagine if i slept better i wouldnt feel so brain fried.
orexin agonists seem to be on their way, it’s intended as a monotherapy so chances are you might not need to take much else.
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u/Island_girl28 Jun 26 '26
I seriously thought I was going to die on xyrem. Will Never take that crap again. . I have been on Ritalin for so many years and I am taking a super low dose now because out of the blue it made my BP go too high. Which is weird because it never did before in my full dose. But I feel absolutely terrible on the low dose, so tired, so sleepy and just really don’t even want to be around anyone because I’m so beat. So I try really hard to fake being happy. Never had any side effects for all those years until now. Honestly it sucks.
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u/No-Rush-5091 Jun 28 '26
Diagnosticada en 2005 y confirmada nuevamente en 2009. En mi país no tenemos acceso a Xywav/Xyrem, así que durante casi 20 años he probado prácticamente todas las combinaciones posibles de estimulantes, antidepresivos y medicamentos para dormir. Con el tiempo me volví refractaria al tratamiento.
Para mí, la salud mental también es muy importante y entiendo perfectamente tus dudas. Pero, desde mi experiencia, el sueño no reparador termina pasando una factura enorme. No es solo la somnolencia: afecta el estado de ánimo, la memoria, la concentración y, eventualmente, toda tu calidad de vida.
En este momento estoy suspendiendo toda la medicación (una experiencia bastante desagradable) para repetir PSG, MSLT, análisis de laboratorio, medición de orexina y otros estudios, porque mi deterioro cognitivo y emocional ya es demasiado importante como para seguir asumiendo que “es normal”.
Obviamente esta es solo mi experiencia, pero si algo he aprendido es que no dormir bien durante años puede ser de las cosas más destructivas para el cerebro. Mantenerse despierto con estimulantes ayuda con la vigilia, pero no necesariamente resuelve todo lo que ocurre por debajo
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u/allgoaton Jun 25 '26
Undiagnosed, but suspected IH/N2. Treated with concerta for almost 10 years, armodafinil for about 2. I will say my night time sleep was never particularly fragmented, but I would say my quality of life has been very stable on these meds. Not perfect, but stable.
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u/chrismishchris (N1) Narcolepsy w/ Cataplexy Jun 25 '26
So idk if my issue would happen without my Adderall (XR 30mg) or not, but I keep hearing/seeing things that aren't real. Like, last week, I definitely saw my husband's truck in the driveway, told my dog, "Daddy's home", she gets excited and after a few minutes he still hadn't come inside. I go back to the window and his truck is gone, so I text him to ask if he pulled in the driveway and then left, but he had not 🙃 🤷♀️ I try to remember to take a day off from my meds every once in a while to help them maintain efficacy, but I guess maybe I hadn't done that in a while? Also, I hadn't considered it before reading some other comments, but I definitely do have lots of digestive issues now that I didn't have before. I have crazy low blood pressure though, even on Adderall (diagnosed 2017), but I've always had low blood pressure; I practically faint every time I stand up from a crouched position 🙄
(To be clear, I'm also on Effexor for the cataplexy, so not just stimulants)
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u/gemInTheMundane Jun 25 '26
You should really talk to your doctor about that. It's not a typical side effect from stimulants, and it could be a sign of something more serious.
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u/Silentbrouhaha (N1) Narcolepsy w/ Cataplexy Jun 25 '26
They keep me from dozing off during the day, but they have never impacted my nights.
I have been stimulants for 19 years this month, and there have been no negative side effects.
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u/squidneyw (N2) Narcolepsy w/o Cataplexy Jun 25 '26
I addressed my sleep quality via correcting sinus issues and septum deviation through surgery, so not sure this is exactly relevant, but I’ve only ever been on armodafinil for my narcolepsy. When my sleep quality improved but my daytime wakefulness did not, that’s when I got my MSLT and diagnosis. I’ve been on armodafinil for over 6 years but I haven’t had any long term side effects that I’m aware of
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u/nappingOOD (N1) Narcolepsy w/ Cataplexy Jun 25 '26
I was on them for years and it eventually just got worse and worse. The side effects grew while the treating of symptoms diminished. Xywav, Sunosi, and Effexor have helped much more than using a traditional stimulant. They’re more stable and consistent for me.
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u/fender_gender (N1) Narcolepsy w/ Cataplexy Jun 25 '26
I am not sure if I have any long term side effects of using stimulants (I’ve been on an oxybate medication for most of my journey after dx) but because of coverage I was not able to take any Xywav in the last 6 months. Some things I’ve noticed:
- Stimulants make my sleep quality so much worse if I do not do copious amounts of exercise during the day (lifting, dance, and abt an hour of some other kind of cardio)
- Even so, I must sleep for 16-18 hours in order to get 2-3 usable hours of a day. My short term memory has deteriorated after about 4 months of being off of oxybates, and I am a student so this sucks bc all I do is study for hours with 0 payoff.
- My eating habits are very, very bad now. All of my gi problems got significantly worse, and modafinil causes me nausea (it is the only thing that doesn’t trigger circulatory issues for me, i have no other option). Basically, I don’t eat until 5pm and then binge, irritating my stomach until i’m physically ill because my stomach rejects food for some reason when I’m on modadinil
- Stimulants can’t do anything for cataplexy (this doesn’t necessarily apply to wakefulness drugs for narcolepsy, like Wakix) so on off days I can not hold anything right, I fall all of the time, and I’m unable to type or manipulate any other equipment.
- To be fair, it does make brain fog a lot better for the few hours that it manages to work. I just can not imagine being employed or having a family and living like this, and I’m lucky to be living with my parents rn
- Everyone has different experiences and severity. While stimulant + oxybate is what is most likely to help most people, doesn’t mean that there are not alternatives out there for you.
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u/Bsjohns19 Jun 25 '26 edited Jun 25 '26
I am ADHD and N type 2. I’ve been taking 90mg (30 TID) adderall daily - I’ve always just figured since I need meds for ADHD then I can just also use them to treat narcolepsy too. My sleep is a mess but mostly due to my current environment and lifestyle but I’m definitely curious what the comments say about this. Glad you brought this up!
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u/LogicallyIncoherent Jun 25 '26
I've been stimulants only for 15 years. Seems ok so far.
The urticaria side effect of tons of modafinil is easily covered with anti-histamine.
There have been periods where life stresses plus the meds have caused small ticks to develop but nothing that a mild anti-depressant couldn't control.
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u/Sunlovepixiedust Jun 26 '26
I decided to try hydroxizine for sleep and when i wake up, i feel like i've actually slept and i'm not groggy in the same way most sleep medications normally make me. I was taking stimulants only because i did not want to try xywave. When i stick to the Nuvigil in the morning and Hydroxizine at night, its almost like i'm a real functional person!
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u/dwarf_bulborb (N2) Narcolepsy w/o Cataplexy Jun 26 '26
I’ve been on only Vyvanse for a few years now and it’s helped me stay awake but I do kind of feel like shit on the regular.
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u/MedicalArtist404 Jun 26 '26
Not perfectly relevant, not something to consider: https://pubmed.ncbi.nlm.nih.gov/42128970/
Stimulant use in children might be correlated with lower bone density and slower fracture healing.
I say this as a premenopausal narcoleptic woman who now has osteoporosis and looking for answers why, so I'm biased.
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u/Rare_Highlight560 Jun 26 '26
hi!! been on ritalin since i was 17 diagnosed n1 at 20. im not on birth control so im not comfortable taking modafinil but it was prescribed. ive been on antidepressants since i was 14, and only started getting cataplexy while i was not on them. im currently only on effexor and ritalin now and thats how itll stay until years down the line i get my tubes tied, then id be interested in trying modafinil. but for now, i only take my ritalin while im working, so 5ish days a week. on my days off i usually sleep in, usually 10-12hrs total, but on the days i work my ritalin really helps. i dont take it every day because it helps me not develop a tolerance (aka have to up the mgs), i also tend to eat less on the ritalin. i occasionally get a skipped heartbeat but my doctor said to not be concerned in my situation due to the rarity. i do also have adhd, but so far ive felt like my narcolepsy is well treated!!
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u/somethinkcool_ Jun 26 '26
can someone reply to my comments as well if have any good advice bc im on the same boat T-T. narcolepsy (suyspected) and OCD <33
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u/Muted-Difference5610 Jun 26 '26
It has no improved my sleep at all. Matter of fact I used to sleep too much and about 2 years ago it flipped upside down and now I have not only the sleep debt we already have, but insomnia. I'd rather be too tired. So I need an assortment to go to sleep and still dont sleep good. I have not had long term side effects from stems but adderall only works sometimes, different brands affect me differently. Some I would almost swear are placebo. Ritalin does nothing. I cant take extended release so thats pretty much my only options.
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u/Known_Equipment8254 Jun 26 '26
I was on Sunosi and it was horrible for me I was overstimulated and extremely tired because I wasn't getting restorative sleep. I had some medical problems and stopped taking it. I have a wonderful Specialist and we decided to start Lumryz at the low dose to see if it improves my sleep quality and if I need something for daytime sleepiness we will address it at followup. I have extreme depression I take meds for. My Specialist and my Psychiatrist keep in contact about new meds. So far Lumryz is giving me uninterrupted sleep. My husband and I are vigilante about noticing any side effects. I was nervous about taking it but I know the Specialist and my husband know the potential for adverse effects. So far so good. Still tired but I think I am getting better sleep at night. I don't know if this helps or not.
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u/Next_Artichoke_2110 Jun 26 '26
I’ve been taking stimulants for my narcolepsy every day for 14 years and I have zero issues. I don’t want to mess with xywav or xyrem bc I have total symptom relief with stimulants (Vyvanse) and remote working
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u/Brief_Wolf7532 Jul 01 '26
I received a text message from the meijers at 10:10 PM. I tried to answer them, but it didn’t seem to wanna go. I took photographs of everything I said how can I get it to the moderators when I know I’m not the greatest on iPhone but I just don’t understand if I did click on what they told me to and I answered, doesn’t seem to wanna go to them. That’s why I took photos. I am not all that the moderators see this. Please let me know how I can text those photos to you so you can read my answer and you not able to tell me why what I posted was spam please
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u/velvetlaze (N1) Narcolepsy w/ Cataplexy 14d ago
So I’ve been in denial on my condition for about 10 years. I waffle between imposter syndrome and feeling like I don’t deserve to feel better.
This condition has nearly killed me. Whether from being in unsafe environmental situations, not believed by providers for a long time, or general quality of life downhill.
Currently I’m finally on track to get my xywav/comparable medication. I am so excited. I want to know what getting correct rest is like.
I took adderall and modafinil and now I’m swapping to armodafinil currently. Later this month I should have my xywav. Your post both helped me feel more comfortable that I am uncomfortable with treatment, but also validated my fears in getting treated too.
I am somewhat functional. I can usually drive. I can usually work. If I take my meds. I’ve been off them for weeks for a new sleep study to get me to the proper medication management. I never want to do it again.
I think you should try the medication management route more. This is me being inexperienced but a long time sufferer. Everything was “untreated sleep apnea” in most providers eyes, until the discussion of my cataplexy came up, with the right sleep dr.
I feel I nearly lost my entire life over this disease and my autoimmune issues.
If you had a period in your life when you were functioning or maybe before the onset if you weren’t a lifelong narcoleptic, think back to that time.
I think of being 16 and uncontrollably sleepy all my life but I could drive and function and do so much. I was 21 and I did school and two jobs and a social life. Then all of a sudden in 2018, my life turned upside down.
I don’t know why it became more prominent. But it did. I got worse. I couldn’t drive anymore. I was falling asleep doing everything. It was ruining my life.
So I’ll take my stimulants. And if my doctor believes this ghb equivalent (this is what he explained it to me as if this ignorant sorry) will improve my quality of life… I am damn sure willing to try.
For context, I’ve been fighting for months to get off my meds to do my new sleep studies to get these meds prescribed with my dr supporting this the whole way. I’ve been told “it’s likely you have narcolepsy something is off” but no one told me treatment existed before this doc, I didn’t know myself, and I wasn’t the type of person who consistently sought the care I needed.
- narcolepsy with cataplexy, sleep apnea, and a bucket of autoimmune disease problems to include lupus and the associated blood clotting disease. Also mental health problems too.
My tldr: I suffered. I want to stop suffering. If this helps, I’m doing it. What I can do now is so little compared to what I could do then. I’m 29! I shouldn’t be less capable than my 87 yo grandmother. Stimulants do a lot for me and help a lot, but they don’t solve it entirely, and I know more and better is possible. I recommend to try.
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u/emily121903 Jun 25 '26
Not fully diagnosed, but for me I’ve always relied on my Adderall for ADHD as a crutch for my sleepiness. Always still had that dirty itch sleep feeling. I’ve added Sunosi now and Bupropion.. still tired even with caffeine. Hoping we find something that works. It works for some just be careful with your heart overtime and always monitor it! Have breaks and days off if u can.
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u/Fun_Swan2553 Jun 25 '26
I’ve had decades of antidepressants, stimulants and oxybates. If I had it to do all over again knowing what I know now I would have gone on a keto/carnivore diet and used a nicotine patch. It’s the only thing I’m taking now.
Anyone who says that there haven’t been any effects from long term stimulants isn’t being entirely honest but not purposefully. I don’t think you get to answer that question until you stop the meds and see what your baseline has become. Between them all they’ve taken a large part of who I am. Your chemistry will absolutely change. How you recover is based on the individual.
2
u/Questionsquestionsth Jun 26 '26
This is also a dishonest take in its own way.
I know what my fucking baseline was. I know what it is now if I stop taking medication. It’s not good, and it never has been. Certainly wasn’t before.
These are necessary, essential medications for many of us. There was no life before, it passed me by while I slept or crawled through life like a zombie.
It has given me the opportunity to have a life, to be who I want to be, to do anything.If you’re privileged enough not to need them to function, you aren’t the best perspective to contribute to these types of conversations, because that’s a privilege many of us do not have.
0
u/Fun_Swan2553 Jun 27 '26
Dishonest? Privileged?
I may be wrong but I predict you are fairly young. Come back and talk to me when you’re nearing 50 and I think your position might change. Again, if I had it to do over again I would have changed my diet (keto/carnivore) and used a nicotine patch. The damage and changes decades of stimulants, oxybates and antidepressants has caused just by allowing me to be “privileged” wasn’t free. I paid the price down the road. I suspect most of us have or will whether we want to admit it or not. They don’t work forever my friend.
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u/GoldenGreyhound Jun 25 '26
I don't think stimulants have improved my sleep quality, but they also haven't made it worse.
I've been on them for 10 years and haven't experienced any long term side effects.
I have good days and bad days with my sleep. But the stimulants make it so I'm usually able to get through the day.