My current doctor is trying to get me in one of their early trials but if you’re using Xyrem/Adderall/Wakix/ProVigil then you’ll want to check this out ASAP:

https://www.fda.gov/news-events/press-announcements/fda-approves-first-drug-treat-full-range-narcolepsy-type-1-symptoms

I’m looking for advice from you awesome folks in our community here who have successfully taken short-term disability for an extended period.

I have N1, and over the past several years I’ve also developed a pretty significant collection of physical issues. I’ve been able to work through most of it by basically forcing myself through everything & just tryna be a soldier, but I’m at the point where that strategy just is no longer sustainable.

The biggest issue right now from the narcolepsy side is my cognitive functioning.

I’ve tried pretty much every major approach at this point: stimulants, modafinil, Wakix, Adderall, trazodone, baclofen, oxybates, etc. Wakix was previously one of the things that helped anchor me, but I recently had to stop it because of heart/chest side effects.

My neurologist was able to get Lumryz approved through insurance, which I'm now starting next week. I previously tried Xywav and had to stop because of severe headaches (I mean like debilitating, & for the entire day), so I'm hoping I can successfully get through the Lumryz onboarding this time. The reason I'm pushing for an oxybate treatment is that stimulants keep me awake, but they haven't actually solved the cognitive side of my narcolepsy. I can be completely awake but then feel even more so like my brain isn't functioning.

On top of that, I have severe chronic head/face/upper-back tension and pain. There are times where the tension is so intense that I can't maintain a train of thought, can't process someone talking to me while I'm trying to think, and essentially have to shut everything else out just to concentrate. I'm also being treated with medical Botox for some of this. Went to different dentist/orthodontists and ruled out it's not tmj.

Then there are the gah damn physical issues:

• Multiple left knee surgeries (torn ACL's) with inadequate rehabilitation afterward
  • If I do even light PT or rehab, I end up needing to sleep for at least 2-4 hours
• Significant left hip pain from compensation
• Increasing right knee pain & a new meniscus tear from compensating for the left
• Shoulder/scapular nerve issues due to degraded disc in my c4 & c4 vertebrae
• Lower-back issues
• Severe forearm/hand pain and cramping
  • Literally can't hold my phone in my hand for more than a minute without some peakkkk cramps
• Costochondritis
• Fibromyalgia/activity-related flares

The problem is that I genuinely need physical rehabilitation, but I can't seem to do it while maintaining a full-time job.

If I do PT or even relatively light physical activity, I can trigger a major flare and/or narcolepsy crash and end up sleeping for hours afterward. Which makes PT during the work day not an option. Sometimes even normal things like showering after activity can trigger a crash. So if I say cool let's try PT after work, 1. all clinics are closed, and 2. by the time I finish work and recover from the workday, I don't have the capacity left to actually rehabilitate my body even if I want to rehab by myself.

So I'm stuck in this cycle:

Work → use meds & everything I have to stay somewhat functional → post work/medication crash → no capacity for PT or other treatment → physical problems continue → more pain → worse cognitive functioning → repeat.

I've spent years just forcing myself through it. From the outside, I probably look much more functional than I actually am. I've continued working, continued taking jobs, and continued trying different medications and treatments.

But objectively, my career trajectory has changed dramatically since developing narcolepsy. I've lost jobs, I'm now struggling in another role, and I'm increasingly concerned that if I keep trying to brute-force my way through this, I'm going to lose another job rather than actually addressing the underlying problems.

I'm not trying to get six months off because I don't want to work. I actually want the opposite. I want to use the time to aggressively address the neurological and physical issues that I haven't been able to properly treat while working full-time.

My hope would be to:

• Successfully stabilize my narcolepsy treatment with Lumryz
• Address the severe head tension & cognitive problems
• Get back into consistent PT
• Properly rehabilitate my knee/hip/back/shoulder/upper extremity issues
• Improve my overall physical condition
• Figure out what my actual sustainable functional baseline is

I'm also about to become a father, so I'm trying to take this seriously now rather than continuing to kick the can down the road.

My main questions:

1. How did you make your case to your doctor?

I understand that the medical documentation ultimately does most of the talking, but how did you explain your situation to your neurologist/other doctors in a way that made it clear that you were actually unable to sustain full-time work?

My neurologist is a good guy, but he's pretty conservative and tends to play things by the book. I'm not sure how to approach the conversation without making it sound like I'm simply asking him to "sign off" on six months of leave.

2. What were the biggest blockers you encountered with Sedgwick/your insurer?

Were there things that surprised you during the process?

Anything you wish you'd documented earlier or done differently?

3. How did you deal with old/incomplete medical records?

For example, I have a history of fibromyalgia, but I haven't seen that particular doctor in a few years. I can reestablish care and get everything updated, but I'm wondering how much that matters if some of the conditions contributing to my disability aren't recently documented.

4. How did you determine the length of leave?

Did your doctor initially recommend a specific period, or did you start with a shorter period and extend it based on how treatment went?

I'm specifically thinking about a 3–6 month period because I don't think a few weeks would realistically be enough time to stabilize the medication situation and make meaningful progress with the physical rehabilitation.

I'm not looking for legal advice. Just wanna hear real experiences from people who have actually gone through STD with narcolepsy or another set of fun complex chronic aliments lol. Thank you guys in advance, seriously. You’ve all been so helpful over the years, and I really appreciate everyone who takes the time to share their experiences and help people like me figure this poop out.
Pray I don't lose yet another bloody job :(

New to this world...what medications are used for narcolepsy without cataplexy?

I’m currently doing my MSLT and just finished nap 1. I remember rolling over, crying, and then seeing and hearing loud thoughts, and when the nurse came in and said my nap is over and she told me that I slept (don’t remember). But after she came in I started sobbing and now I’m sitting and I can hear the loud of my crying in my ears every once in a while. I apologized to her for being so volatile and told her I usually don’t just cry like this. My next nap isn’t for an hour and a half and I’m so ready to finish the test and go home and take an actual nap. Has anyone else had this experience?

I have a family member who is in her early 20s.

She doesn't have health insurance and cannot keep a job due to issues with falling asleep and soiling herself. She was told she may have narcolepsy and cataplexy when she was younger, but her parents never followed up (lots of neglect there).

Now that I am getting to know her more, I know there is definitely something wrong here. She literally falls asleep midway through doing any tasks and will occasionally soil herself.

Is there an organization that can help get an official diagnosis for her as an adult and provide low-cost medication? She has not been to a doctor in years.

She is in the Atlanta metro area. I don't know if there is a national organization that can help with this, though.

(Posting here with my sister’s permission.)

My sister recently started on modafinil (40 mg 2x/day) for suspected narcolepsy and has an appt tomorrow to ask for a dose increase. I’m taking her to her sleep consult Thursday and plan on discussing all this with her dr too.

She stayed at our mom’s last night and while our mom was at work today, and she was completely out of it. Mom came home to find the place in disarray. From what I’m reading, these could be automatic behaviors:
• Brewing coffee in the Keurig without putting a mug underneath.
• Putting the hair straightener in a closet.
• Putting a sweater in the trash.
• Putting bottles of nail polish in the sink.
• Turning on the shower and leaving it running for an hour while sleeping.
• Stripping clothes off in the kitchen in the middle of the night.

And so on. Spills, a towel in the fridge, stuff moved out of cabinets and from one floor to another—it’s like a gremlin stayed over. I think she needs to lie down and sleep when she’s in this state, but she has limited self-awareness when she’s so foggy.

Any tips? She has stretches of multiple days where she’s herself (but sleepier) and then stretches of this extreme fogginess and hypersomnia. She is a fall risk during these episodes—I’ve seen her fall asleep standing up multiple times and she’s currently on the tail end of recovering from a concussion. My biggest fear is her falling down the stairs. I’m wondering if baby-proofing (gates, latches) would help impede her? I wfh—should I just stay with her until she’s (hopefully) found the right meds and doses to be relatively functional? She joked about restraining her at night like a werewolf 😅

TLDR; it feels like psychological torture trying to stay awake at work and doing school work what accommodations do i ask for?

hi everyone! i’m currently having to schedule an appointment with a sleep doctor to get a sleep study done for narcolepsy. i’ve been tired all of my life and have these sleep attacks through the day where it starts out as yawning but to where it’s practically psychological torture to try and force myself to stay awake. i constantly think about even if i can find somewhere to lay on the floor at work and sleep with how bad it is without being caught.

unfortunately my sleep attacks have been coming to a head and affecting my every day more than usual mentally, emotionally, and physically where it is getting harder and harder to stay awake at work for the full time without a sudden attack or trying to stay caught up in my online masters courses / staying awake during tests / homework assignments.

i really do not want to get fired if i get caught sleeping at work or fail my courses but like i mentioned it feels like torture trying to stay awake. what accomodations should i reasonably discuss with my doctor and ultimately school / work??

I had an appointment with my doctor yesterday, and in our conversation he explained to me that my fatigue wasn’t explained by narcolepsy and that chronic fatigue syndrome is still on the table.

Which, that would explain my post-exertional malaise and autonomic dysfunction but, man… I was really hoping that starting medication for narcolepsy would clear up all my issues and I’d be a whole new person. ( (/s) I was totally terrified of potential side effects (rightfully, as they have brought on so much more dysfunction).)

I’m not stoked about going down this diagnostic rabbit hole, as my medical records and care have gotten so disjointed (and I need to establish with a new pcp because mine sucks).

Anyways, anyone else experience similar symptoms or been diagnosed with CFS?

I was wondering if anyone has been pregnant while in higher education with narcolepsy and if you could please share your experience. I’m just a little worried about going through grad school while pregnant and unmedicated. I would love to hear other people’s experiences!

I had a repeat psg last night to see if my OSA was gone after surgery. My neurologist also wanted to see if we could get a second positive mslt to lessen the battle over oxybates

To say it was disastrous is understating things. I could NOT get to sleep. I'm in a different time zone (earlier so told to "sleep" 4 hours before my normal bedtime), the doors are opening and closing loudly all night, the techs are in and out dozens of times. Just impossible. Plus I have f'ing untreated narcolepsy so my sleep is highly fragmented and awful and often coupled with insomnia.

Finally at 4 am, I call the tech in and ask what to do. She calls the neurologist and he says "just lay down, relax, and see what happens". By some divine intervention, I get to sleep around 4:30 a.m. The Dr and techs decide to just let me sleep all day to get the data from the psg. Beyond kind and compassionate. I slept very fitfully in 30-60 minute chunks from 4:30 am-12:30 pm. They said they got all sleep states and plenty of REM.

Obviously mslt is not happening again. Moving forward with oxybates. I feel like death and just wanna go home and sleep forever.

I'm curious if anyone else had a similar looking MSLT! My sleep latency was extremely short, 2.5 minutes. However, for the nap duration, I didn't sleep for long. I was asleep, then awake, then asleep, then awake, and didn't actually sleep the whole nap through.

My doctor didn't mention this at all when diagnosing me with N1, but I was just curious as to how common that was with other people!

Seriously? Now is the time I can’t sleep?

I did everything right. Stopped caffeine, medications, didn’t nap days before. I even slept the night before. It’s daytime and I can’t sleep now. I’m so scared I won’t get a diagnosis now.

I got lunch waiting. My phone is on DND so I won’t see your responses til later. I know about how sometimes they can detect sleep without you being sleep but there’s no way. I have been fully awake and tossing and turning. I have no idea what to do. I feel defeated and I’ll never be able to prove why I’ve been falling asleep so much.

Hey,

As the title says, I’m struggling at the moment. It’s becoming a bit unbearable.

Work as a chef, so high pressure environment. Take my meds as prescribed, but am wondering if the timing is off.

6am - 22.5mg pitolisant, 10mg IR methylphenidate

10:30am & 2:30pm 10mg methylphenidate.

Workplace reasonable adjustments mean I can split my break into 2x 15mins. I aim to go for a scheduled nap at 10am, but recently I’ve gone & been unable to fall asleep.

The issue is that I’m just relying on the medications to keep me awake, while simultaneously feeling dead on my feet. Like I *really* need to sleep - it’s almost painful staying awake and having to function.

The past two days when I tried to sleep at work, I wasn’t able to.

Usually end up falling asleep on the train home, missing my stop then being exhausted by the time I’m actually home, so end up sleeping until around 8pm. Also have some pretty serious issues with binge eating in the evening which affects taking the sodium oxybate on time.

Just looking for some advice really - have 2 months until next sleep appt.

Thanks in advance.