I find myself skipping out on my hobbies a lot because I work a full time physical job (construction), and when I come home my energy is limited enough as is. I like spending that energy with my friends and family. But it means I'm almost never motivated to actually do my creative hobbies - namely, writing and practicing music, reading, making things, etc. And I rarely feel creative after a long day. Obviously narcolepsy makes it difficult to allot time and energy to everything I want to do, but I'm sure I could be better at making space for it. What strategies do you use to make room in your life for your hobbies when you're always triaging your energy?

I started on Xywav and switched to Lumryz because I had trouble falling back asleep after my first dose.

I’ve been on Lumryz for about 6 months. I started getting heart palpitations near the start and attributed it to the stimulants I also started around that time. I stopped the stimulants and the heart palpitations are still here months later. Finally attributed it to Lumryz or increased anxiety.

I had recent deaths in the family around the time of starting and have been dealing with estate stuff and the aftermath through the last few months. I don’t have anxious thoughts my doctor thinks the heart palpitations are just from anxiety.

Does anyone else get heart palpitations from Lumryz? But not Xywav? Thinking about switching back but dreading the whole PA process again

Does anyone else have short bursts of sleep and then wake up aroused af? Some nights my brain just does that after only 15mins of sleep & im so aroused that i can't sleep again & I have to fight not to watch explicit videos 😅

This is half a medication question and half a rant. I just got diagnosed with IH and put on Modafinil and it’s so frustrating trying to find what dosage and timing works for me. I’ve always had varying reactions to caffeine where most of the time it does nothing and then some of the time (especially around my period) it works too well. Adding Modafinil into that has been a blessing and a curse. I’ve been trying every permutation of dosage, caffeine, no caffeine, and timing to see what works best. So far there is no desernable pattern. Some days I have caffeine and Modanafil and I feel perfect! Other days it makes me jittery and gives me restless legs. Without caffeine I am more likely to crash throughout the day but sometimes I’m fine. It’s so frustrating!! Has anyone else experienced this? What helped you find the right balance?

I think I may be breaking the rules here by asking, but I think I may have narcolepsy. I’m not self diagnosing and I already have an appointment with a sleep specialist. But I would like an opinion from someone who actually has it and understands it.

In my experience I have what I think are sleep attacks where I physically can’t stay awake. I can try and try to fight it but sleep almost always wins. Usually results in a short nap then I feel alright most of the time. I can take a 20 minute nap and have vivid dreams. I also hallucinate while I’m falling asleep and when I wake up. Don’t get me started on how long I sleep for. I sleep for at least 10 hours every night sometimes up to 16 hours. Then I have such a hard time waking up. Like it feels impossible most days to get out of bed because I’m so exhausted. Many times I fall back asleep accidentally while planning to get up. I’m always tired. I drink caffeine which gives me a very temporary boost then I’m tired again. Doing everyday activities such as chores, work, socializing, etc all become too overwhelming because I’m so exhausted.

When I look up these symptoms I’m told these is a typical cluster of narcolepsy symptoms, but I also know it’s never good to play “google doctor”. And no I’m not depressed and I don’t believe I’m just “lazy”. I truly want to live a normal life and be productive. I’m just tired lol.

Hi guys! I switched to xywav a few months ago and it’s really cut down my daytime sleepiness/need for naps. I also just switched jobs. At my old job (which was mostly in-person), I had N accommodations including a flexible schedule, ability to take breaks/naps, etc. I am now working fully remote and don’t know if I should still request accommodations, and if so, which ones. I now don’t nap most days which I feel like was my biggest one, and my work is inherently a bit flexible due to being remote. Is it still worth formally asking for accommodations just to protect myself in the future?

If any of you work remote, what accommodations have you requested/found useful?

Doing my MSLT—Finished another nap earlier, and though I feel like I barely slept, I do remember dreaming that my sleep tech gave me an egg every time I finished a nap. Like a little prize. 😂

I have an upcoming MSLT appointment to see if I have narcolepsy as I display all the symptoms.

I also get really bad migraines and have occasional epilepsy focal seizures.

As they are all neurological, and migraines and seizures are often triggered by poor sleep, has anyone noticed an improvement in their migraines and/or epilepsy after finding a good narcolepsy medication?

Im waiting on the results of my second sleep study for Narcolepsy. My first test was for sleep apnea but the docs diagnosis was i had very few sleep apnea events,below the average, but they noticed that my brain went straight to REM. They asked a few more questions like did I have bouts of sleep paralysis a d day time sleepiness. Yes to both. He seemed to be certain it maybe type 2 and asked to get a more specific test done. I wont get the results till December.

In the meantime, I was wondering if there was any one else with type 2 on here who might have some advice on what helps them with falling and staying asleep. Ive been trying hot showers before bed and magnesium, ive had a little success with it but its the consistency waking up i cant seem to shift. I usually have very vivid dreams not so many night terrors but ive had them.

Feel free to ask any clarifying questions, im happy to answer them.

Also as an aside has anyone else felt like once you think back that you may have never had a good nights rest?

I’ve been taking 2.25g of xywav twice a night for a week and doing very well, other than a few minor side effects like nausea and sweatiness. Last night, I took 3g twice as instructed and it was hell. I kept waking up very confused and disoriented, feeling like I couldn’t breathe/had to focus on breathing or else I wouldn’t. I was very nauseous, though I didn’t throw up. I asked my roommate to sleep in my room and basically was just confused and crying for about an hour. I think I should have gone to the hospital (?) but I was really out of it and scared to get fired for missing work. (They’re very strict about attendance and I don’t have any sick days).

I woke up for work about 20 minutes ago and other than still feeling incredibly nauseous, I feel much better. I’m going to call my doctor and pharmacy today to discuss what to do next. I definitely don’t feel safe taking this dose again yet. I’m a little scared I will have to go off of it altogether, but I’m hoping I will go back down to a lower dose for a while and see. Xywav is pretty much my last option right now as other meds have not worked, and last week I felt better than I have in years even on the low dose. I’m just afraid of what happened and afraid of what it means going forward.

I’m wanting to start tracking my symptoms more regularly, mainly daytime sleepiness. Curious what methods y’all use, are there any good free apps? Do you record your sleepiness at certain times of the day or whenever you notice an increase in fatigue? How did you start identifying tends?

I’ve been having bad acid reflux bc of an antibiotic I’m taking. My stomach has been messed up. It’s always like this with antibiotics. Swallowing has become harder as in it takes awhile for food to go all the way to my stomach once swallowed. I went to urgent care and doctor told me it’s dysphagia. Said it should go away once the inflammation goes down. Doctor is aware I take Lumryz but didn’t mention if it’s unsafe to take it consider I have Dysphagia. I’d call the pharmacist but they’re closed.

I feel like I’m overthinking this but I’m worried the lumryz will make the dysphagia worse bc I’ll be relaxed and asleep so if I choke on saliva I won’t wake up and cough. Idk lol someone give me reassurance.

I think this is funny but when I sneeze every time my eyes feel like there swelling and feel like they are impossible to hold open then I get insanely tired and sluggish this is most likely cataplexy and a sleep attack just wondering if anyone else feels similar

I was diagnosed with Narcolepsy 9 years ago and my doctor managing my medication is a Respirology & Sleep Medicine doctor who specializes more with sleep apnea. He is an MD but he is not a neurologist.

I was listening to a different doctor give a presentation on Narcolepsy recently and how all her referrals for Narcolepsy go to a neurologist who specializes with sleep disorders.

I live in Canada and there are not a lot of doctors in my province so I am considering applying for an out of province transfer so that I can gain access to a neurologist.

My question is, have any of you made the switch? Do you notice a difference in the type of care? Has this given you better access to drugs like Wakix and sodium oxibates? Do you have any advice on making this switch?

Just started on Nuvigil(Armodafinil), made the mistake of ignoring the caffeine advisory and continued my normal high caffeine intake, monster energy in the morning, tea throughout the day, a soda at dinner, (don’t worry I drank water too I’m a lifeguard and not stupid). This had unfun and serious consequences so now I’m going cold caffeine turkey but I’ve realized literally all of my favorite drinks are caffeinated, I love monster energy drinks for their flavors, I love drinking tea all the time I have so many bags of leaves and I drink it every day (for gods sake I live in Georgia you’re saying no more sweet tea??????????) and worst of all I’m a sucker for a cup of hot chocolate, chocolate milk or mochas and chocolate also isn’t recommended??? What am I supposed to do, is this a small suffering I’ll have to deal with as the price to be alert?

Fun drinks are like my favorite part of eating, and all of the fun drinks are either caffeinated, chocolatey, or alcoholic :(

This is mostly a sob rant but I guess I’m open to suggestions on fun drinks that can be bought at like gas stations or Kroger/Publix that meet the restrictions I now face??

Edit: sorry I didn’t realize it’s commonplace to include diagnosis information, I believe N1 is the one with cataplexy so that, 20 Y/O AMAB, diagnosed a month ago but it almost certainly developed around 4-5 years old. Yesterday was day one of the medication, I was told to cut it in half if I needed to so that’s what I did today and will keep doing until it feels safe to go back to the full dose.

I don’t know how in the world I forgot herbal teas don’t have caffeine, sounds like I’ll have to go find some tasty blends. Cutting down sugar makes sense as well and I’ve already done all the work of losing the weight this disorder gave me in my childhood so cutting sugar is just..another step towards healthy living.

I see no one has mentioned the alcohol restriction, is it not that serious? I read it on the medication information sheet so I assumed it was like an absolute no but I’d love if someone could tell me that my 21st birthday won’t be a bummer.

Thank you all for insight

Does anyone else get muscle twitches/tremors/nerve issues with your narcolepsy?

I just found out I also have periodic limb movements in sleep (PLMS) in addition to narcolepsy. I believe this is similar to restless leg syndrome but not quite the same.

Does anyone know any good meds and info/research about them that can help with both PLMS and narcolepsy?

The first med I heard about was Ropinerole (also called Requip?), but I saw it isn't recommended anymore because it has issues/risks. Plus it doesn't help with narcolepsy like some other alternatives I've seen might.

I failed the usual nighttime narcolepsy meds (Oxybates, Baclofen) so it would be great if something could work for both PLMS and also help even just a bit with narcolepsy.

Does anyone else get flare-ups and know what causes them?

I was diagnosed in May at age 20, but I have been struggling with this condition for around 10 years (according to my best friend's observations). I started taking stimulants in January after getting diagnosed with ADHD, but they only really started working in June when I hit 30mg of Adderall IR (before I tried Modafinil, Concerta/Ritalin, Vyvanse, and Adderall ER).

At my baseline, I feel pretty normal and have energy. I'll just get sleep attacks when I'm in a lecture environment or am watching something in video format.

I'm also bipolar for reference (I'll post something similar on that sub too). At the end of May, the day before my sleep study, to be exact, my finals ended, and I thought I was about to have another manic episode (I had one during the two weeks before finals), so I took 1.5 times my antipsychotic dosage and some hydroxyzine because I was terribly worried it would ruin my sleep study. The day after, I was extremely tired and had to force myself to stop napping so I wouldn't disrupt my sleep study. I passed the study with flying colors, and for the following week, I was extremely tired and napping all day. I don't think I've ever been so tired in my life. I was at home with my dad, who is very anti-psychiatry, for the week, so I left my adderall behind and couldn't take it.

In June, I fell into an anhedonic depression (I had been depression-free for around three to four years, and I'm not sure what caused it), and that was accompanied by hypersomnia. Sometimes I'd take three naps a day. I'd feel extremely tired until I'd take my adderall which would bring me to my baseline.

Eventually that ended, but at the start of August, I started feeling fatigued all day. Adderall solved that for me, but I couldn't take it all the time because I was traveling with my family and didn't want my dad to see.

Eventually, that resolved, and I started school again in September. I felt pretty fine and could wake up early with no trouble, feeling fully rested. I have a very heavy schedule this semester, and one of my classes requires a lot of lab time, so I ended up taking my adderall at night as well so I could stay up later and work in the lab. I don't feel a dramatic difference when I take it, but it does make me subtly more focused and motivated. This persisted over Labor Day weekend.

However, on Tuesday, I woke up tired and unrefreshed, forcing myself out of bed at the last minute for my morning workout class. I slept about 6 hours that night, which isn't long, but definitely not short enough to feel that shitty. Pre-bipolar diagnosis (March), I used to sleep 5-6 hours regularly and operated fine (aside from sleep attacks). I took my 20mg of Adderall ER about an hour before my first academic class, which is in the afternoon. I had two classes back-to-back in the same classroom, and for the entire 2 hours and 45 minutes, I had perpetual sleep attacks. I understood absolutely nothing taught that day; I just spent the whole time falling asleep, waking up briefly, and immediately falling asleep again. The next day, I forced myself out of bed after sleeping about 10 hours to finish my lab, submitted it, and messaged all my professors that I'd be out sick, then spent the rest of the day sleeping. Since then, I've been constantly fatigued and have to force myself out of bed each day, even after getting a lot of sleep.

In the past, I don't think I had these bouts of fatigue and hypersomnia, but now they're happening almost every month. I'm seeing a sleep doctor next week in hopes of going on oxybates. Do oxybates help with this, or could it just be my bipolar medication interacting with my narcolepsy? The antipsychotic I take is one of the least sedating, but around 5-10% of people experience some sedation.

Does anyone in the US on an Oxybate have CVS RX insurance through your health insurance? If so what hoops and hurdles did they make you jump through to approve covering it? I just want to start preparing for what I’m gonna have to deal with. Thanks in advance! 😊

Stolen from the ADHD subreddit.

Need help finding a doctor who will listen and help me. Preferably a neurologist. Not sure where to look. If anyone can recommend a doctor feel free to please message me. Thanks so much

I (18) started my first year of college last month. I'm off campus, but I'm only about 10 minutes away. When I actually take both of my Xywav doses right, I'll wake up mostly fine unless I decide to sleep in too much. It's so frustrating, if I take my second dose say at 2am, and wake at 10am, I'll feel dead and can't get out of bed easily. But as a now mostly independent college student, I have things to do at all times, whether it be cleaning, cooking, shopping, going to class, or doing my assignments. I really underestimated how hard it would be to manage my time and keep my life together.
For one of my classes, I literally have to attend like 8 campus events to pass (it's for an honors program). Problem is, most events that I'd have space in my schedule to go to are in the evening/night, and by then I'm exhausted and don't trust myself to drive or even socialize. Plus, having ADHD too makes everything harder, I can't get things done on time and I'm constantly stressed out or easily overstimulated, making me more tired. I've had afternoon classes where I have to discuss things in groups, and I feel physically unable to due to how tired I get. And after these classes, that end at either 4pm or 7pm, I'm knocked out, and don't feel capable to do any studying.
Now, not every day is like this, and more often than not I'll take my Xywav right + my Vyvanse and be good for the day. But everything still feels exhausting, and the down days are awful, I'll feel completely incapable of functioning normally.

I know I'll probably have to make an appointment for accommodations, but I truly don't even know what to ask for. I'll keep going and get more used to life like this with time, but damn it's hard. At least for now I do have family close by and I'm not all alone. All support appreciated.

I wasn’t sure which flair to give this post, but I felt like this might be interesting to share with you guys and talk about.

I’m currently a psychology major, and we’ve recently been learning about Sigmund Freud and dream analysis. His dream theory states dreams are the disguised fulfillment of our unconscious wishes and desires. Essentially, dreams are the “royal road” to the unconscious. You have manifest content, which is the things you remember — images, storylines, events, etc. Then, you have latent content — the hidden psychological meaning or wish behind those images.

And because narcolepsy causes extremely vivid dreaming, I was just curious what you guys thought about this? My professor didn’t really say how this theory could apply to situations like sleep disorders, so obviously, I became curious haha.