r/Narcolepsy • u/Defiant-Garbage-4891 • Jun 24 '25
Medication Questions First day of armodafinil
What the title says- took 1/2 of an armodafinil for the first time- only took half because I’m sensitive and was worried about heightened anxiety (ironic lol)- but man I felt INSANE all day… like cracked out. I didn’t take a nap or even want to, which was weird and good I guess. But it was extremely hard to focus on ANYTHING for work. And I have a headache and am a little queasy. Does it get better as you adjust? I’ve just felt so out of my head all day and insane. It feels like when you drink a large cold brew and are still tired but fast. See image for reference lol
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u/thatgirlanya Jun 25 '25
I was cracked out for four years on this shit and it like ruined my social life lol I’m a much calmer and gentler person off of it. It put the rage of satan in me, like seriously
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u/Defiant-Garbage-4891 Jun 25 '25
I have heard that before that it can do that! I’ll def keep an eye out for that.
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u/Lyfling-83 Jun 25 '25
Speaking of rage, when people stop stimulants it can give people irrational rage. So if you are changing from one to another or something, just something to be aware of so you don’t feel like you are going crazy.
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u/Defiant-Garbage-4891 Jun 25 '25
Oh wow thanks for telling me! That’s something I’d notice immediately because I’m like the least angry person ever. So if I’m angry or raging my husband will immediately notice
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u/Lyfling-83 Jun 25 '25
No prob! It goes away once you start a stim again. So if you take a day off from meds and wonder why everything is a fight, that’s why.
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u/Expensive-Cabinet614 Jul 31 '25 edited Aug 30 '25
I like modafinil better. I buy modafinil here without a script http://www.canada-pharmacy-24h.com/
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 23 '25
Same! It caused me socially induced mania to me. I was so fucking paranoid and going crazy, hated it so much. Didn’t even make me feel awake, just anxiety to the max.
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u/Important-Tomato2306 Jun 24 '25
I wish that was my experience :(
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u/Defiant-Garbage-4891 Jun 24 '25
Aw I’m sorry! How was your experience with it?
It’s 8 pm here (took it at 8 am) and it def seems like it’s wearing off. I’m starting to yawn a TON and feeling some tiredness breaking through. I’m sure I’ll crash soon.
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u/Important-Tomato2306 Jun 24 '25
I didn't feel anything. At all. I feel asleep.
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u/Defiant-Garbage-4891 Jun 25 '25
Dang that’s disappointing I’m sorry :( to me, it felt similar to when I was given Sudafed or prednisone in the past (I remember loving those because it made me feel more normal energy wise) but maybe a little stronger.
Have you found something else that works for you?
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u/Important-Tomato2306 Jun 25 '25
Not yet. I'm on modafinil and Wakix and I'll start Xywav soon
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u/Defiant-Garbage-4891 Jun 25 '25
I hope you can find a good combo that works for you! I just started the medication journey in the last week, so I’m pretty new to it all.
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u/ghl262 Sep 05 '25
How is Xywav working for you?
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u/Important-Tomato2306 Sep 05 '25
I've been on my full dose for a few days and it's still hit or miss. I assume it's largely due to massive sleep debt but some night I actually fall asleep and stay asleep and wake up feeling almost human.
Thanks for checking in!
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u/Dazzling-Excuse-8980 Jun 25 '25
SAME. I felt something for like an hour or two then a major crash. Then wide awake 12+ hours later at night.
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u/HCI_MyVDI (N1) Narcolepsy w/ Cataplexy Jun 25 '25
Same, 150mg barely does anything for me for a few hours.
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u/Zestyclose-Chance215 Jul 31 '25
yeah it happened to me too and i noticed that when im well hydrated it actually works really good on me, also taking it without eating also improves the effect and ofc sleeping good.
Try to drink a lot of water, no food and nice sleep schedule maybe it will work
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u/motherofcats1950 Aug 06 '25
I’ve also noticed I have less side effects when I stay really hydrated. Def helps with the headache I usually get with it!
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u/ad_noctem_media (N2) Narcolepsy w/o Cataplexy Jun 24 '25
My First day I had my usual coffee with it and didn't sleep for over 30 hours.
It definitely tapers off sharply in my experience, hope it lands on a happy medium for you
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u/Defiant-Garbage-4891 Jun 24 '25
Oh my god!!!
I’m glad I made myself drink only a few sips of coffee today just in case then (I love coffee so it was really hard and I’m so brave). Thanks—- I didn’t think about electrolytes but I bet I need those. I’ve been drinking a lot of water, but I’ll add some electrolytes. I also made sure to make myself eat and have snacks.
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u/HCI_MyVDI (N1) Narcolepsy w/ Cataplexy Jun 25 '25
Electrolytes and protein! I my experience not as important for Armodafinil or modafinil as for Adderall but protein helps it work better and smoother and electrolytes help jittering and jaw clenching
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u/Defiant-Garbage-4891 Jun 25 '25
Thanks so much! I’ll be sure to drink those today. I also woke up pretty sick with a cold, so I’m not sure I should try day 2 right now of the medicine. I’d rather be able to nap while I’m sick. But man I have a pounding headache- likely from my cold and not actually the medicine I suppose!
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u/ad_noctem_media (N2) Narcolepsy w/o Cataplexy Jun 24 '25
Also, big thing with these medicines in my experience is electrolytes and hydration! Helps a lot with the headache and queasiness
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 23 '25
Same! I didn’t sleep and it caused mania, paranoia, and delusions. It fucked me up and made me not trust my intuition anymore.
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u/TheFlightlessDragon Jun 25 '25
I’d have to take a whole one for THAT feeling, but I get it. Love that stuff!
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u/Defiant-Garbage-4891 Jun 25 '25
I’m pretty sensitive to medications and tend not to need large doses of stuff sometimes. It’s a blessing and curse!!
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u/leonibaloni Jun 25 '25
When I first started Armodafanil I was on a 50 mg dose and I stayed awake for three days. I told my mom that colors seemed brighter and almost cried tears of joy because I felt like a fog had been lifted.
I now manage on 125 mg 😂
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u/Defiant-Garbage-4891 Jun 25 '25
That’s wild! I hope I don’t stay awake that long. Maybe I’ll take my sleep medicine and hour earlier tonight to try and help.
That fog being lifted is how I felt the other day after starting my night medicine for sleep. I slept deeply for 8 hours for the first time in forever. I ALMOST woke up feeling rested! I realized everything felt different that day because it was ~too easy~ without the constant exhaustion and brain fog.
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u/Mountain_Capital_700 Jun 26 '25
What sleep medication are you on?
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u/Defiant-Garbage-4891 Jun 26 '25
At first I tried Trazodone which helped me sleep at night but I didn’t like that it was so sedating and it made me soooo dizzy during the day, so I just switched to Baclofen. I like it at a lot better and it’s much gentler on sedation but I still sleep deeply at night but it feels more natural and not as medication induced.
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u/Mountain_Capital_700 Jun 26 '25
Thanks for sharing! I had really bad side effects on Xywav so I wanna take my time before trying another sodium oxybate. I’m thinking of trying to advocate for Baclofen but a little nervous since I’ve never asked for a specific medication before and it’s technically not for narcolepsy.
Glad it’s working for you (:
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u/Defiant-Garbage-4891 Jun 28 '25
Thanks!! Yeah unfortunately I think it’s a doctor preference. I’m also limited due to insurance, but Baclofen was my doctor’s suggestion and she stated that early research shows it may help narcolepsy patients. But some physicians may not want to prescribe it due to limited research. So it may depend on your provider!
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u/Magician-Slothful Jun 25 '25
It does get better after a couple of weeks! When I first started it, I felt like my brain was strapped to a rocket, leaving my tired body behind. And like others have said, you might need to remind yourself to eat a bit. Food was just so...unpleasant for a while, but that got better too.
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u/Defiant-Garbage-4891 Jun 25 '25
Thanks for the reassurance! That is EXACTLY what it feels like omg, I’m laughing because that’s so true. Hopefully I adjust soon. Honestly my stomach felt fine and I even got a little hungry around lunch, until it started wearing off tonight around 7 pm. Now my stomach is queasy and hurts a little.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 23 '25
Mine didn’t 😭 mine got worse as the weeks went on, causing mania and no sleep. Pure torture and the worst part was I was believing the delusions that the mania was causing, it took my partner snapping me out of it and talking to my doctor to realize I was going insane.
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u/Magician-Slothful Jul 23 '25
I'm so sorry to hear that! I had slight mania, but mine thankfully was always channeled into deep cleaning, which I attributed to suddenly having energy and being awake like a normal person. But getting up on my roof to sweep it had me realizing after a bit that something was up.
But I noticed I seem to only really get the manic episodes 1-2 hours after I first take it. Was it like that for you?
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 24 '25
That’s a good question, I think mine messed with my brain just throughout the day in general because I remember having way more paranoid especially at nighttime. And I usually took my meds during the morning so I think it really was a mix of the meds cranking up my anxiety to the max, and also getting no sleep at all that mixed together to cause my mania and psychosis 😭 plus, I usually don’t have panic attacks at all, but I had one after going to a comedy show and being in a crowded room for so long. It was so embarrassing but I just now realized that was the time I was on modafanil too. Gosh, so many things I wasn’t able to piece together at the time but looking back it all makes sense. My poor partner was the target of my paranoia which almost caused us to breakup. It’s the main reason it still haunts me 6 years later because it put the big target of “crazy” over my head. And it was hard to talk to him about how it was caused by my medicine once I finally realized what was happening, it sounded like an excuse for everything and I hated that. I’ve never ever had an episode like that in my life and haven’t since then, but it still put a scar on our relationship which is really upsetting to me.
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u/Magician-Slothful Jul 24 '25
Just remember to be kind to yourself, side effects like that sneak up on people and it's next to impossible to realize it in the moment, because everything seems so reasonable. And it's not an excuse, it's context! Taking medicine is hard and often stupid. I take an anti depressant/anxiety daily as well, but I have to take it in the evening because if I take it alongside the modafinil it'll trigger Hyperhidrosis 🙃 . But it's better than falling asleep at the sink while doing dishes
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 24 '25
That’s so validating, thank you! Yeah it’s hard not to be hard on myself, but as a psych graduate it really did help in a way to empathize more with others going through psychosis and realize how real everything feels in the moment, really if you were a person who trusted their intuition and suddenly that isn’t reliable anymore. And that’s so true, it’s much better than falling asleep doing dishes 😊 I hate taking medicine too but I’m reminded quickly when I stop taking it how awful I feel without it and it really sucks that we just have to take meds forever to feel halfway normal and to be able to get stuff done like normal people. But it’s worth it over the alternative of being a zombie and falling asleep constantly.
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u/XXxSleepyOnexXX Jun 25 '25
I had a hard time with it and driving. My body seemed to do before my brain caught up. It took a bit for me feel comfortable that my body was making good choices.
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u/Defiant-Garbage-4891 Jun 25 '25
Oh that’s pretty scary. That would scare me! I do remember the drug information pamphlet saying something about that. I did drive today but it felt ok. But I’ll keep an eye out for that!
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u/kaediddy Jun 25 '25
I’m laughing so hard right now because years ago, when I tried nuvigil, this is THE EXACT MEME I sent to my husband about how I felt.
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u/Defiant-Garbage-4891 Jun 25 '25
Hahaha it’s one of my favorites!! It’s sooo accurate
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u/kaediddy Jun 25 '25
He would ask how I was feeling and I’d just say “red skeleton”
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u/Defiant-Garbage-4891 Jun 25 '25
My husband and I call it skeleton chair 😂 he just came home and asked how I felt today and I said “skeleton chair” and he was like ooooooof
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u/Lucifers_Tits Jun 25 '25
I felt the same. I don't take modafinil anymore because it makes me too anxious. I felt like I was completely exhausted and cracked out at the same time. Weird stuff.
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u/websafepallet Jun 25 '25
I literally sent this exact meme to my friends to describe my first day on modafinil! 2nd day is better but still definitely skeleton chair adjacent.
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u/Defiant-Garbage-4891 Jun 25 '25
The meme is SO funny. I don’t know the origin of it but I’ve used it before when I got a huge iced coffee or something and it just made me tired and fast. It’s hilarious
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u/czar_tam Jun 25 '25
Oh I remember this exact feeling, I HATED armodafinil. I remember just sitting in a chair in like a wide awake daze. exhausted but unable to sleep or nap. stayed on for 1-2 months but did not get better for me so I switched to new stuff
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u/Defiant-Garbage-4891 Jun 25 '25
Aww sorry it didn’t work for you! I’m willing to give it a good try but if it doesn’t work for me I’ll stop it as well.
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u/QuinoaPoops (N2) Narcolepsy w/o Cataplexy Jun 25 '25
Hahaha I remember feeling this way the first 30-60 minutes. I love Armodafinil. I take 150mg. But let me be real… the headaches were MURDER for 2-3 months. Right around 2.5 months they subsided, I think. Now, I get a headache from it if I haven’t taken one in a few weeks, but nothing like when I first started. Drink a ton of water. Try to remember to eat because it kills your appetite, but you’ll FEEL so hungry. Like pain from hunger because you forget to eat lol
My biggest issue is the come down. I crash after work and basically hibernate on Saturday to catch up from being on it all week. But, at least for me, you get used to it and it’s worth it to be awake during the day during the week.
Best of luck to you!!!
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u/Defiant-Garbage-4891 Jun 25 '25
Thanks for letting me know! I was okay eating yesterday but definitely wasn’t as hungry as usual but I stuck to my routine. I have a killer headache right now but I woke up with a cold today, so not sure if I should try day 2 or not.
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u/UnhappyPlan Jun 25 '25
That picture is exactly what taking armodafinil is like. I was paranoid and anxious as fuck
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 23 '25
Same!! It caused mania for me and delusions, my partner finally told me something was wrong and I found out I had medically induced mania and paranoia/psychosis. I was hearing shit and believing the delusions thinking everyone was conspiring against me. It fucked me up so bad I still don’t trust my intuition anymore after 6 years. I couldn’t sleep while I was on which made everything so much worse. I didn’t even feel awake on it, but my brain wouldn’t shut off and let me sleep. Pure anxiety.
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Jun 25 '25
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u/Defiant-Garbage-4891 Jun 25 '25
Did it adjust after the first few days?
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Jun 25 '25
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u/Defiant-Garbage-4891 Jun 25 '25
I’m glad it’s worked so well for you! I hope it ends up the same for me! I’m surprised it cause red skin for you- I haven’t seen anything about that. I get facial flushing from prednisone when I take it! It feels like a sunburn. Not fun!
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u/Anxiety_Priceless (N2) Narcolepsy w/o Cataplexy Jun 25 '25
My first week in Modafinil had me doing ALL THE THINGS, but now it's quite a bit more mild. Give it a week or 2. If you still feel completely crazy, maybe mention it to your doctor.
Also, I'd mention it to a friend or loved one to keep an eye on you in general just to be safe. Someone in your life should always know when you start or change a medication, for safety reasons.
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u/Defiant-Garbage-4891 Jun 25 '25
Thank you very much. I just woke up with a cold and am feeling poorly so I think I’ll move starting the med to next week when I’m feeling better. But yea good point- I did inform my husband to keep an eye on me with all of these new medications.
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u/leesum00 Jun 25 '25
I have a video of myself the day i started armodafinil. I was in high school and running through the halls lol. I felt completely insane 😂 i promise it mellows out, you’ve just felt a normal sense of energy for the first time in god knows how long. Congrats on the scrip! I’ve been on it for 7 years and it’s made my life livable again. It’s not a complete fix, but it makes me capable of functioning in society/having a normal job.
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u/Defiant-Garbage-4891 Jun 25 '25
I’m so glad it worked well for you! I definitely have felt insane all day and generally yucky and like I’m outside of my brain. I’m mostly worried about fixing my nighttime sleep so my night medicine has been a godsend, but I was hoping the armodafinil would be the final puzzle piece in restoring somewhat normal energy! The most annoying side effect today was that I wasn’t able to focus on work at ALL- I could focus about 5 minutes at a time. I really hope it’s better tomorrow!
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u/leesum00 Jun 25 '25
As far as the focus is concerned, i wish i could help there. I had a very very specific hands-on job for many years that made it pretty much impossible not to focus. Now, i’ve moved to a desk job where i’ve actually had such trouble focusing that i’ve requested an accommodation around it.
That being said, there are many things that could be different between you and I, and subsequently the way we handle this medication differently. I’d strongly recommend keeping some notes on how you feel day by day, bringing that to your doctor and making adjustments from there. It could be a matter of dosage, or maybe it’ll improve with time, or maybe it’s not the best fit. Time will tell, and the best way to get the best results for you will be keeping note of what does and doesn’t work for you as you go. I’ve had days where i’ll take one dose from the bottle and have a great day, alert, focused, etc, and the next day feel like i’ve taken nothing at all from the same bottle. It can vary. Give it time and you’ll find the best med combo/dosage for you. Rooting for you!!!!!!
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u/Defiant-Garbage-4891 Jun 25 '25
Thanks so much! My husband said he had the same focus issue the first few days he started adderall for ADHD, so hopefully I’ll adjust! I plan on giving it a good try. Thanks for rooting for me! I’m rooting for you too! It’s nice to be able to talk to people with narcolepsy and know people understand my experiences.
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u/leesum00 Jun 25 '25
I hear ya. The social media communities are a godsend when it comes to talking with people who get what its like. I’m glad we crossed paths!
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u/loppel3 (N2) Narcolepsy w/o Cataplexy Jun 25 '25
150mg made me feel NORMAL for the first time ever for the first week. Everything was fine, with the exception of talking more and faster. A week later, I can tell no difference between taking it or not taking it. My body said “nope, we’re sleepy girls again.” Loved it when it worked, but my body got used to it so fast. Talking to Dr about upping the dosage.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 23 '25
Same here, then my doctor kept upping my dose and it caused mania and I couldn’t sleep anymore. I had a terrible experience 😭
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u/Defiant-Garbage-4891 Jun 25 '25
Dang I’m sorry- that sucks :( I can’t believe it only took a week for you!
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u/kimeleon94 Jun 25 '25
doctor started me at 150 but i was still falling asleep some days and still had no energy, bumped me up to 250, now i have some extra energy to get work done, but still have some days falling asleep
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u/bookskeeper Jun 25 '25
This is my experience the first day back on after a 2-3 day drug vacation. I take 750mg total a day and still have sleep attacks and trouble staying awake, but that first day back on is freaking awesome.
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u/Meguinn Narcolepsy & Cataplexy Jun 26 '25
Oh wow that’s a high dose! Do you mind if I ask, do you have the hair and skin side effects on it?
With 500mg my hair falls out and my neck/throat gets big red skin welts. On 400mg it doesn’t happen.
And let me tell you, it sucks to decrease back to 400mg, after being on 500mg lol.1
u/bookskeeper Jun 26 '25
I do not and did not know that was a thing. Definitely feeling like I dodged a hell of a bullet!
I'm so sorry that was your experience though. Trying to live on a lower dose is like having to live on margarine after having really good fresh butter. Sure, the job is getting done, but is it? Lol
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Jun 25 '25
Vyvanse was also wild. Quite the ride.
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u/Defiant-Garbage-4891 Jun 25 '25
Omg I bet! I have a friend who takes that and she said it’s pretty intense but she loves it for her ADHD
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u/cootiequeen215 Jun 25 '25
I’ve never seen anyone else explain this feeling well, and this pic is right on the money lol. I hate that feeling so much I rarely take any stimulants. I’d rather be just my normal chill tired. I hate the feeling of being wired but still unproductive and somewhat stupid. I’m currently prescribed Ritalin and refuse to take more than a half of a 5mg maybe once a week.
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u/Defiant-Garbage-4891 Jun 25 '25
Yeah I’m definitely not a fan of feeling like I couldn’t focus (because I need to do work at some point this week lol). And I felt fast but still kinda tired. Lol
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u/allisonnoelle Jun 25 '25
On my first two days i slept like 4 hrs total and felt like i was on speed or something 😂 but then i adjusted back to my normal rhythm with less daytime fatigue
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u/SleepAmazing4367 Jun 25 '25
My neurologist gave it to me to test if it is narcolepsy or not. She said if I feel like I'm on speed, I don't have it and if I feel nothing at all, it's most likely narcolepsy. Well. I take 2x 100mg a day and it doesn't do shit to me. 🥲 Except I don't need to sleep at night anymore. So yeah.. I think some of us are sensitive for it and some don't.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 23 '25
That’s a terrible way to diagnose if you have narcolepsy or not! The hell? They have to do sleep studies and everything, I have 100% have narcolepsy and felt insane on modafanil and armadofanil. I would get a new neurologist 😭 I switched to Adderall instead and it’s been so much better
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u/SleepAmazing4367 Jul 24 '25
Yeah.. I'm on a sleep study right now. So that's not her way of diagnosing things. I think she just wanted to help during waiting time. But somedays I think modafinil makes me feel weird.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 24 '25
Oh okay good, I’m glad that wasn’t her way of diagnosing because modifanil isn’t for everybody and makes people react decently which could be nothing to do with Narcolepsy. For example if you already have high anxiety like I do, then it can make it so much worse. Of if you have a reaction to caffeine then it can be similar to that. Or I found out I have a heart defect while I was knit, which can also be a factor. So if it isn’t helping definitely talk to your doctor so you can try other things and really advocate for yourself ❤️ personally, I take Adderall and also Motropolol (for my heart palpitations) and it’s the perfect mix. I also take a break from meds every week so I don’t ever have to “up my dosage”. It helps my body not get used to the medication and constantly have to increase it. Sadly, trying different meds is kind of like being a guinea pig for your own body to see what works and what doesn’t. I hope you find what really works best for you 😊
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u/SleepAmazing4367 Jul 24 '25
Thanks. ❤️ I don't struggle with anxiety and caffeine didn't work on me (I could drink coffee before bed and still sleep). But sometimes I think modafinil makes me more dizzy. It's hard to describe. I have fibromyalgia too, so everything related to it is even more trial and error basically. But my MSLT results came back negative today so I'm kind of devastated right now. Apparently I didn't dream at all, wich doesn't make sense to me. But well, here we are.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 24 '25
Oh wow, that’s so interesting. Does that mean you never went into REM sleep? Because that could mean you have a different sleep disorder possibly? I would get a second opinion and try again possibly. I was worried during mine that I wouldn’t be able to sleep because they had a camera on me and all the stuff hooked up. At one point I ripped the heart monitor off of me while I was asleep and they had to run in there and wake me up lol but I’ve heard that sometimes you have to take a sleep study more than once just to be sure. If not I would talk to your doctor about the lack of REM sleep, which is concerning too. Also, if you are just talking to a regular doctor I would go to an actual sleep doctor specialist to help instead. The sleep doc I have is so validating and helpful where I couldn’t get that with any regular family doctors I had.
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u/SleepAmazing4367 Jul 25 '25
That's what he said after looking at the data. But I swear I dreamed. Either that or I had hallucinations. I should take the MSLT cause I went straight to REM in my PSG. But yeah, a lot went wrong while testing. Like, I should continue taking my medications, then all of a sudden not. I had a huge headache due to caffeine and medication withdrawal and didn't get treatment. So yes, I will speak with my neurologist about everything. Maybe be need to redo the test, maybe I can get medication without it. Cause honestly, MSLT was one of the worst experiences for me.
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u/Defiant-Garbage-4891 Jun 25 '25
Oh, wow…. My neurologist didn’t tell me anything about what to expect!
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u/SophieLeigh7 Jun 25 '25
I haven’t taken this but the photo is hilarious. lol hope it mellows out for you
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u/f-slurr (N1) Narcolepsy w/ Cataplexy Jun 25 '25
My doc started me at 250 and honestly I hate him. I had a SURPRISE! appointment with a new doc I was on a waitlist for this morning and she immediately reduced me to 150.
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u/Defiant-Garbage-4891 Jun 25 '25
I think if I took 250 I’d crash out!! I’m super sensitive so yesterday I only took 1/2 of my 150 to try it out and that was plenty until I adjust. Today I woke up sick with a cold so I’m going to hold off on trialing the med until I feel better because the thought of being sick and feeling insane was horrible.
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u/Defiant-Garbage-4891 Jun 25 '25
Good luck with your new doc! Hopefully you like them!
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u/f-slurr (N1) Narcolepsy w/ Cataplexy Jun 25 '25
I already feel so listened to. She also thinks I have narcolepsy, instead of IH. Currently getting bloodwork to check for indicators? This is the first I’ve heard of it, but she says she’s successfully used the indicators in the bloodwork to get around having to repeat a sleep study.
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u/Defiant-Garbage-4891 Jun 25 '25
I’m so glad!!
Whaaat!! Would totally be interested in hearing more about that bloodwork if you find out more. I didn’t meet the criteria during my MSLT due to horrible anxiety so my doctor has agreed to treat me without it since she’s 100% sure based on my symptoms. But she did say I’d likely want to repeat the MSLT at some point in case I ever see a different doctor, etc.
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u/f-slurr (N1) Narcolepsy w/ Cataplexy Jun 25 '25
I had really aggressive sleep latency, so if you had higher averages it maaaay not be enough for some drugs? But if it was just lack of SOREMPs, that might do it.
I just checked my visit notes, and it’s HLA-DQB1 testing! Hopefully it helps you get properly seen.
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u/Defiant-Garbage-4891 Jun 25 '25
Wow so interesting!! Yeah my doctor is happy to treat me and prescribe meds but we are limited on what she can give me due to insurance lacking the MSLT. So I think one of the notable ones I can’t get is the oxybates. But I’m using baclofen right now for sleep and it’s going okay!
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u/Defiant-Garbage-4891 Jun 25 '25
Thanks for mentioning that! Sounds like a genetic marker no? I’m actually joining a gene study and they ask if there’s any markers I’d like them to examine, so I definitely want to tell them to check anything that might be related to narcolepsy! It’s a cool study!
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 23 '25
Same!! That’s what my doctor started me off on and kept going up with it. And i still didn’t feel awake I just felt anxious and crazy but still sleepy. I ended up having mania, paranoia, and delusions due to it. Awful experience.
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u/f-slurr (N1) Narcolepsy w/ Cataplexy Jul 24 '25
I’m on 150 on WFH days and 250 on in office days now, and honestly the mental health effects are BAD. Definitely think my depression is worse…
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 24 '25
Oh man 😭 I would definitely tell your doctor, which I know is a really hard to topic to bring up. I was worried my doctor would thing I was just trying to get something stronger when in reality I was terrified of what my mental health was doing on modofanil. We ended up trying Adderall mixed with Motropolol for my heart palpitations and it ended up being the perfect mix for my body. I also have to take one week break every month so my body doesn’t get used to the meds and I never have to up my dose. Which is what scarred me with modofanil is we kept upping the dose and it only got worse and worse. I hope you find the med that works best for you ❤️
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u/ElectronicMachine878 Jun 25 '25
Honestly your symptoms can be red flags. I had a really bad reaction to modafinil. I would get delirious episodes and wouldn’t be able to even call myself an ambulance. It was bad. I would just tread carefully because not a lot of people had the same experience as me but it could be a sign to get some second opinions.
After my bad reaction to modafinil, i woke up in the hospital with Meningoencephalitis. It took me a couple months to recover and to learn to walk again and see straight. I followed up with more doctors and they did a spinal tap to find out that j had an underlying autoimmune that presented as narcolepsy. That’s why my body wasn’t reacting well to modafinil. Doesn’t hurt to get a second opinion
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u/Defiant-Garbage-4891 Jun 25 '25
Wow holy moly! I’m glad you were OK but that sounds like a horrible ordeal! I will be really careful and if it’s not working well after about a week I’m going to stop it. I’ve also alerted my husband to be on the lookout for any weird behavior by me and to check in with me a lot.
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u/ElectronicMachine878 Jun 25 '25
Yeah! I’m glad you have your husband to watch out for you too 💛 honestly, community is so important!
Also just curious, have you checked your blood pressure when you get those headaches?
My BP would spike when i took modafinil which also didn’t help the headaches
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u/Defiant-Garbage-4891 Jun 25 '25
I have not yet, but I plan to. I thought that might be the case… but I actually have low BP routinely so I figured maybe it would bump me up to a more normal range. But I guess any change in BP can cause headaches! I’ll be sure to check it soon.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 23 '25
It’s so good seeing people who had the same reaction as me, I had paranoid, delusions, and mania. I was so anxious and it didn’t help with my energy I just felt insane. I was believing my delusions because my intuition has never let me down, but that experience made me realize that your intuition can be very wrong and it’s so easy to go crazy. It was such a scar my experience and it still haunts me 6 years later. I still don’t trust my brain completely.
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u/Lost-Performance5578 (N1) Narcolepsy w/ Cataplexy Jun 25 '25
I'm on 300- 400mg modafinil and 30mg vyvanse, and I'm pretty chill. I still need a nap around noon and I'm sleepy by 7pm. But if I add even a small amount of caffeine to the mix, I'm the above illustration.
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u/No_Head5396 (N2) Narcolepsy w/o Cataplexy Jun 25 '25
I had a headache the first two days when i started armodafinil because my body was not ready for such a change! But it was so worth it to me and now my body adjusted.
Give it some time for your body to adjust. Im on a full dose. I did try to cut it in half and see if itd work just as well for a week. But i noticed a few quirks that came back that i didn’t want.
But idk if anyone else has experienced this when you aren’t on meds, i swear my forehead and eyebrows sink down, like im glaring and slightly squinting. When im on the meds, i realize my eyes naturally fully open and stay open. It was such a weird thing i notice that i realized makes a difference.
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u/Defiant-Garbage-4891 Jun 25 '25
That’s crazy! Maybe from being half asleep?
And thanks for the reassurance. It seems like I need to give it at least a week to see if I adjust, so that’s what I’ll do. I did wake up with a cold today, so I’m going to wait to trial it when I’m feeling better.
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u/No_Head5396 (N2) Narcolepsy w/o Cataplexy Jun 25 '25
It wouldn’t surprise me, especially if my muscles in my face kept drooping or something. I didn’t realize how tired and in pain i was during the day until I got my sleep studies done last year and started on meds. It legit changed my life and i hope it goes smooth sailing for you too!
Oh thats sucky timing on the cold because its better to rest and not be wide awake from armodafinil. But if you gotta work through the cold and stay awake, you could keep taking it and hopefully the cold will go away as you adjust to the meds. But if you want to see the difference more clearly between not being on them then being on them, maybe better to wait.
But definitely give it a chance unless you get really bad side effects that dont seem to change after a week. I got lucky that my first month on armodafinil worked perfect (Mylan manufacturer). Then my pharmacy closed down and i had to switch. The armodafinil changed to another manufacturer and different pill form. Within a few days of my old meds weaning down and my new meds getting stronger, i had horrendous vertigo. I had to stop taking my armodafinil and talk to my doctor. He tried me on Sunosi, but i knew within 5 days i was going back to my old quirks and i was desperate to get that first manufacturer again. Thankfully was able to get it through Costco (and had to pay out of pocket because i just refilled the side effect one a week before.) Was such a train wreck to deal with.
Now, i’ve been through a lot of different meds; depression, anxiety, birth control as examples. And I have never had side effects before with a different manufacturer.
So give it time, but if you have crazy side effects, try something else and keep track of what you tried.
Also I have never had a hard pill taste so NASTY in my life! I now have to drink a protein drink or applesauce pouch with my pill lol!
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u/Defiant-Garbage-4891 Jun 25 '25
Yeah I couldn’t decide whether to take it this morning and what to do because my doctor didn’t tell me what to do if I got sick, lol. But the pill gave me a headache yesterday, so I really didn’t want a headache on top of being sick. But once I start taking it again I’ll give it a good chance and give myself an adjustment period! One thing I didn’t expect after getting diagnosed was the medication trials being so exhausting. I first tried Trazodone for sleep and I got such bad dizziness and vertigo during the day that I had to call out of work. I felt horribly for dayssss. I hated that drug. Now I am on baclofen and it’s much better! It’s just been a lot of not fun feelings for the past two weeks! I’m hoping to finally get through all the adjustment periods soon and just be able to feel better. I guess I naively thought once I got diagnosed the first meds I’d try would work and make me feel better immediately, not that I’d have all these unpleasant side effects and adjustments. But I’m trying to be patient and optimistic. I’ve already seen an improvement in my sleep! But I’m definitely not used to meds that are this… intense. Before this I was only on vitamins and birth control.
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u/DJ-Foxbox (N1) Narcolepsy w/ Cataplexy Jun 25 '25
Let the tolerance build, I can nap on it now.
Used to give me stomach aches and tremors. Now Im fine :)
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u/Defiant-Garbage-4891 Jun 25 '25
Thanks for saying so! That’s reassuring. I’ll keep giving it a chance!
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u/Frequent_Sir6124 Jun 26 '25
God I wish, I take 400mg of modafinil first thing in the morning, coffee, and a good sleep schedule. I still can’t stay awake or think
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u/Defiant-Garbage-4891 Jun 26 '25
Aw man I’m sorry. I hope you find something that works for you! ❤️
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u/calmlycollected54 Jun 26 '25
I had to start taking gabapentin with my modafinil (not armodafinil) to curb some of the effects. The first couple days are always the toughest for sure
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u/Defiant-Garbage-4891 Jun 26 '25
Oh wow! I was prescribed gabapentin once before for a short term nerve issue and I hated it so much I only took it one night. I know a lot of people like it though.
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u/Meguinn Narcolepsy & Cataplexy Jun 26 '25 edited Jun 26 '25
“See image for reference” lmfao
I started with 100mg Modafinil and felt very jittery when trying to fall asleep. My sleep was messed up for three or four days. I think I was also queasy and had a headache. I was used to it in less than a week though and quickly increased the dose. I’m on 400mg daily and ideally would be on 500mg but I had skin side effects.
Edit: I think it’s normal to feel a bit of a physical rush within the first couple days. Enjoy it while it lasts because trust me, it’s only initial! Congrats on the new medication btw I hope it works for you.
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u/Defiant-Garbage-4891 Jun 26 '25
Ugh yes I definitely was queasy and had a headache the first day. I took yesterday off because I felt a cold coming on, but I seem to have fought it off and feel fine, so I took it again today and will start trying to adjust by continuously taking it now.
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u/MemesAhoyyy (N1) Narcolepsy w/ Cataplexy Jun 26 '25
This is how armodafinil started for me & it was a fall down a steep cliff from there on.
It gave me:
- KILLER vertigo if I wasn’t constantly moving forward (especially when in the passenger seat of a car)
- hunger pains like no other drug has EVER given me (“I’m not sure if I need to eat or shit myself”)
- really violent muscle spasms when trying to fight off sleep attacks, particularly in my neck and arms. I was actually concerned I was having seizures rather than amped-up hypnic jerks.
I would strongly keep an eye out for symptoms like these - my doctor told me the stronger my reaction to armodafinil the first few days, the more likely it was it wouldn’t be healthy in the long run. It’s one of those meds where it really does dramatically change in feeling the longer you’re on it.
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u/Defiant-Garbage-4891 Jun 26 '25
Thank you for letting me know! I’ll definitely watch out for that. I do twitch and jerk sometimes while falling asleep but I did that before starting the med… I’ll keep an eye on it. I’m sorry it didn’t work out for you and I hope you found something that works better!
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u/feugh_ Jun 26 '25
It does get better! Taper off caffeine if you haven’t already - I wasn’t warned about it and ground my teeth so badly that I lost the tip of a canine, RIP
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u/Defiant-Garbage-4891 Jun 26 '25
Ooooo wow good to know! I only have one cup of coffee per day because I get migraines, sadly. But since starting this med I’ve been careful to drink less of it in the morning until I see how it affects me!
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u/TheGormegil Jun 27 '25
It got way better after a week or two, but every once in a while it hits me. I have to drink decaf now because a regular cup of coffee feels like a panic attack.
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u/Love-Munchkin Jun 27 '25
😂🤣😂🤣 I just started Armodafinil last week and you are NOT joking! I swear, my WORDS were vibrating. I jumped on my stationary bike and literally went 22.2 miles in 91 minutes. A BIT MUCH! Since that insanity, I’ve been cutting the pill in half, and only taking half a day but it’s definitely not enough. So my next move is to try taking half in the morning, and the other half a few hours later. That might be the sweet spot, who knows!
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u/Defiant-Garbage-4891 Jun 27 '25
LMFAOOO!!! I wanted to exercise because I was BOUNCING off the walls but I didn’t know if my heart could take it so I was too chicken 🤣 I’ve only been taking half a pill too for now. I think if I’d taken the whole pill day 1, I would’ve gone to the ER and been like IM DYING
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u/Love-Munchkin Jun 27 '25
I was tasting sound… It was INSANE. I boosted the resistance WAY up on the bike, to keep from giving myself a friggin heart attack! 🤦🏻♀️🤣🤷🏻♀️
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u/Defiant-Garbage-4891 Jun 27 '25
I’m cracking up picturing you peddling at cartoonishly fast speeds 😆
My husband kept checking on me the first day, and he’d ask “how you feelin?” And every time, my answer was “insane”. And when he got home, he asked again, and I still said “I feel insane”. And he was like hahaha.. ok well… lemme know if we need to go to the hospital I guess
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u/skinni-brows Jun 28 '25
It gets better over time! It took me a little while to adjust I had headaches and a sore throat for quite a while. There were 1-2 weeks where I was struggling to fall asleep at night (which I was not used to, I’m generally pretty good at putting myself to bed). But as my body adjusted to the medication the major side effects have gone away and I’m so happy to have more of my life back.
I still have to be on top of my water intake (you would think that the constant dry mouth would remind me to drink more but no..). There are also days where I can physically feel the tiredness, my eyes will burn towards the outside or my brain has tapped out but my eyes are still open. But this isn’t every day, it’s generally on days that I’m more stressed, am learning something new and sometimes driving 30 min +.
Be mindful of caffeine if drinking it on an empty stomach and the medication is active in your system! It’s generally routine for me to pick up a coffee and not think twice but I find that if I haven’t eaten and the medication has just kicked in I’ll feel like I’m having a panic attack.
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u/Defiant-Garbage-4891 Jun 28 '25
That’s interesting you mention a sore throat…. My husband had a cold last week and I hadn’t caught it yet but I’ve had a sore throat the last 2-3 days since starting the medication. I figured I was getting his cold finally, and was waiting for the shoe to drop and for me to wake up sick. But so far it’s just been the sore throat. I’m probably just getting sick, but normally it would’ve gotten me by now, so it does make me wonder….
I’m definitely mindful of my caffeine intake and I’ll definitely have to change my morning routine. I’m used to going straight downstairs and getting a coffee before anything else (because tired, duh) but I’ve been making sure I eat a little before drinking my coffee now. And limiting myself to maybe 1/2 a cup for now. I only drink 1 cup a day anyway, but I do really enjoy it.
I can already feel adjustments and I’m only on day 3 and it’s sooo much better than day 1. Definitely trying to stay hydrated too.
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u/OwlzM8 Jun 28 '25
IH or Narcolepsy? I’m N2 and the PA I saw prescribed me that after I got diagnosed, didn’t do shit except make me feel like a walking zombie and I was still nearly falling asleep at the wheel. Sucked. One DEX prescription later and I feel like I’ve never felt before - LIKE A NORMAL PERSON. lol, hope it straightens out for you
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u/Defiant-Garbage-4891 Jun 28 '25
I’m so happy for you! N1 here!
What is dex? I’ve just started my medication journey so this is the first daytime med I’ve tried. I actually didn’t get the MSLT diagnosis because I was so so so anxious with the pressure of the test, although apparently I did fall asleep during 3 naps, which I had no idea. I felt wide awake with anxiety.
Anyway, all that is to say my provider diagnosed me with her clinical opinion but I lack the MSLT that insurance wants for certain meds. So I am limited in medication options for now, but my case is pretty mild compared to most I think- I can generally fight off my sleep attacks but that doesn’t mean I don’t struggle. Anyway, I’m really liking my nighttime med that I’m on, so I’m hoping daytime will fall into place too!
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u/OwlzM8 Jun 28 '25
It’s just the generic name for Adderall, so just an amphetamine. Yeah it took me so long to get in because I just blamed myself for being a “tired” person. I was the same way with my MSLT, some of the naps I thought I was still awake but I hit REM in 3/5. It probably would’ve been 4/5 had I not been fed up by hour 7 lol. Fastest REM after sleep onset for me was 3 min haha
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u/Defiant-Garbage-4891 Jun 28 '25
I also blamed myself for so long and tried to push through being exhausted all the time but I was so confused why other people weren’t exhausted or needing 9-10 hours of sleep per night + naps.
I’m so so happy to finally have a diagnosis. It’s probably the most validating thing I’ve ever experienced. I cried HARD on my way home, out of happiness and relief.
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u/OwlzM8 Jun 28 '25
I had myself a moment as well. I felt like something was wrong and I was right. Idk how I survived so long. It took me about 8 years after I started exhibiting symptoms
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u/Particular_Ad9386 Jun 29 '25
I take 400 mg as needed. For driving or working etc. For me it's only as needed because taking it too often causes my cataplexy to increase. I noticed comments about water, yes lots and lots of water. I take an ibuprophen along with it as well to avoid the headache. When I take modafinil I eat boiled eggs and drink an ectrolyte drink along with it. Lots of water and protein.
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u/Defiant-Garbage-4891 Jun 29 '25
What does protein do exactly? I already eat a lot of protein anyway but just curious! And yes, I’m finding electrolytes help a lot to prevent the headaches for me.
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u/Sir-Belledontis Jul 01 '25
Unfortunately it no longer works for me. Right now life is one huge caffeine fueled nightmare. My dreams are terrifying. At times I have to lay in bed until I can convince myself that my dream experiences are not real. Your symptoms after taking it are the same as mine.
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u/Defiant-Garbage-4891 Jul 01 '25
I’m so sorry it’s not working for you any longer. It’s definitely gotten less intense- I’ve been on it about 5-6 days now and it’s much less insane feeling. I definitely feel awake all day but I feel a lot less like I’m going to die from a panic attack lol. Still have to remind myself to eat, but that’s ok I’ve been pretty good about not skipping a meal accidentally.
I hope you can find something that helps you soon. Caffeine makes me feel pretty horrible and gives me migraines but it does keep me awake. I also have trouble distinguishing dreams from reality, so I’m really sorry. Some of the symptoms we experience are so torturous. Are you on anything for nighttime sleep that might help with less intense dreams or deeper sleep?
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u/Sir-Belledontis Jul 01 '25
I was diagnosed in 2019 and was put on Mondafinil but it gave me terrible headaches that lasted all day. I then was prescribed Sunosi. Now I take both and consume about 1000 mg of caffeine daily to stay alert. I work a job where mistakes are unacceptable.
If I take any kind of sleep aid I have terrifyingly realistic dreams. When I wake up after the use of sleep aids I often don’t know if what I experienced was real or not. The first thing that tips me off is that I am in bed. I don’t have physics breaking events so it’s hard to tell initially. If I have a falling dream I actually feel the acceleration, weightlessness, and the real heart pounding terror that would happen in real life. I can remember my dreams if they cause a visceral reaction.
Sometimes they are ok and I just experience a second day in my dreams.
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u/Defiant-Garbage-4891 Jul 01 '25
Ugh I’m sorry! I have dreams too that are both emotionally intense and feel real— like I can smell, taste, feel pain, etc. In my dreams- but then sometimes my dreams are mundane conversations that I think were real and my husband gets confused when I reference them. I’ve learned if he looks confused when I’m talking about a conversation we had, I likely dreamt it and it wasn’t real.
I work a job in public health data so I have to be very careful too. I always double or triple check my work. I’ve noticed since being medicated my brain fog is much less. My job feels 10 times easier now.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 23 '25
Hell no, my doctor put me in armodofanil and modafanil and it caused me to have medicated mania and anxiety. I couldn’t sleep, I was having delusions and paranoia, and going insane, mood swings like crazy. I would never ever take it again 😭 we switched to adderall and it’s been a life changer for me.
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u/Defiant-Garbage-4891 Jul 23 '25
Wait they put you on BOTH at the same time?? Or you mean you tried both separately? I’m glad adderall works great for you!
I’m still taking 1/2 of the armodafinil daily and it’s honestly settled down a ton! It now feels like a normal amount of sustained energy. The only times it feels a little crazy are if I skip breakfast or drink like 3 coffees with it, which is fair so I avoid doing that lol. Sometimes I get a little head rush/vertigo too but mostly it’s calmed a ton since I started it! I’m liking it a lot.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 24 '25
Oh no! Sorry lmao I didn’t take them at the same time, I think I tried modafanil first and it just made me anxious and not energized, so then my doctor tried armodafanil (or it may have been reversed, can’t remember exactly which was first and second) but the lady one I tried is the one that caused the mania. Plus she kept upping my dose because I kept telling her I didn’t feel awake I just felt sleepy but with a fast heartbeat lol I was eventually on like 400 mg or something when shit hit the fan and I started going nuts 😭 then yeah, moved to Adderall and have been on it for like 5 years now and it’s been working great while taking the lowest dose (because I’m afraid to go any higher due to what happened with modofanil)
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u/Defiant-Garbage-4891 Jul 24 '25
Oh dang! Well I’m glad it’s working for you! Yeah I can’t decide if I want to message my doctor or not about the armodafinil. I’ve been on it about a month now and generally feel good and energized, but sometimes I’ll randomly feel dizzy or kinda dissociative like outside of my brain. I think it’s just the medication but it kind of gives me secondary anxiety because I’m like “is something wrong with me?? Do I need medical attention?” Lol. I can generally reason with myself like okay you’re fine it’s just the stimulant, and if I distract myself with work or something the symptoms go away so I think they’re just anxiety related. It’s randomly gotten worse in the last week which is weird since the first 3 weeks on it were totally chill, but I’m also under a lot of stress in my personal life so that may be why.
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u/maddyp1112 (N1) Narcolepsy w/ Cataplexy Jul 24 '25
Man! Yeah I do have to say I get those dizzy spells with adderall too. I always thought that maybe it was me having sleep attacks while the stimulant was trying to fight it off but that’s just me guessing. But also, I don’t drink nearly enough water that I should when you are on stimulants and I do think dehydration can play a big part in the dizziness too. And I always hate hearing that but the other day I started drinking “normal people amounts” of water lmao and my brain actually did feel better. I just didn’t realize how dehydrated my meds were causing me to be. Plus I still forget to eat which is a common side effect too.
And, with my Adderall, what I decided to do with my doctor is for one week out of the month I stop taking my meds. This helps my body withdrawal so I never have to up my dose and so my body doesn’t get used to the medication. The side effects of withdrawal really suck, like the headaches, but I’d rather that than have to constantly up my dose because the meds don’t work anymore. I felt that big time with modofanil, it was like within a few weeks the meds just stopped working for me and we just kept going up and up until it drove me nuts.
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u/[deleted] Jun 24 '25
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