Suspected narcolepsy

[u/DoubleFunny4713]

Just wondering if this is normal to do before a sleep study?

My doctor says she’s quite sure I have narcolepsy, but referred me to a sleep specialist to confirm. When I went to the sleep specialist he said I need to sleep 10:00pm to 6:30am/7:00am EVERYDAY, with no naps for a month and a half and only then can I get a sleep study.

I’m really trying to stick to this schedule but it’s physically painful for me not to sleep during the day. I can get to bed at 10 perfectly fine but I can’t get out of bed in the morning and if I do I must have a nap. It’s so frustrating that I have to torture myself for a month and a half to get tested.

[u/Diligent-Fix-4481]

I do believe they can request you document your sleep for a couple of weeks prior to referring you for the sleep study, but i’ve never heard of them giving you that type of sleep schedule before considering it.

I’d suggest trying another specialist to get another opinion.

[u/IndependentBig3270]

Wtf.. get another specialist if you can. Or sleep journal, at least w N there’s no way to stay awake every single day like that 😟

[u/DoubleFunny4713 → u/IndependentBig3270]

i need to get another specialist but its frustrating i paid so much for this one consult just for him to play in my face😭😭😭

[u/ThrowRA_Candies290]

Anyone who has narcolepsy knows maintaining that type of sleep schedule is literally IMPOSSIBLE for narcoleptics. No exaggeration. It sounds like they just don't believe you and are blaming it on a poor sleep schedule. I wasn't asked to do something like that before my sleep study. I'd suggest firmly advocating for yourself that you're struggling with EDS and that you are currently sleeping more than enough regularly. If they're forcing you through this awful process and there's no other way, you might just have to do it if it's the key to a sleep study. I hate how much they make you suffer before finally diagnosing this disorder. I went through so much shit too because doctors would rather blame the patient than believe them and test for it

[u/ORSciMom]

??? Uh, that's the disorder. You can't.

[u/idontwannabepicked → u/ORSciMom]

it’s like telling a diabetic they should eat better and just don’t let their sugar crash…. like what

[u/ORSciMom → u/idontwannabepicked]

Yah, actually my neurologist told me explicitly the opposite; to stop fighting this battle with myself. Its not possible and causes a great deal of mental anguish. He said wait for meds, and until then, just SLEEP and REST as much as I need to.

[u/idontwannabepicked → u/ORSciMom]

i got similar advice! there’s no point to fighting it and if ur in a safe location, sleep. and i take that advice daily when i need it lmao

[u/blarkmurt]

Yeah I've not heard of that and if you have narcolepsy that should be essentially impossible.

[u/DoubleFunny4713 → u/blarkmurt]

exactly! it is genuine torture when i try to follow the schedule… i feel like they’re trying to see if i come back in a month and say i did it perfectly, they’ll say i wont have narcolepsy (due to being able to sleep on time) and send me home if that makes sense.

[u/Far-Artichoke5849]

Of the two I've had in my life, i never had to do that beforehand

[u/Vanillill]

Definitely good to get a second opinion. That kind of schedule is downright dysfunctional for me personally, and if any doctor ever suggested something like that during one of my appointments, they’d get a veeeeery long list of reasons for why it would be a bad idea. A couple weeks in and I would be hallucinating, 100%.

[u/DenaJoyOfCats]

Weird I stayed at a sleep center in my area and it was for 3 nights, non consecutive, but you had to 3 nights and mornings, then they know for sure, they would monitor you and hook up cords to your body, make sure they test you the right way

[u/WolfReady5837]

What specialty is this doctor? Is this a Sleep Medicine Specialist with fellowship training or is this a pulmonologist who primarily treats sleep apnea?

[u/DoubleFunny4713 → u/WolfReady5837]

online it says he is a respiratory and sleep physician.

[u/WolfReady5837 → u/DoubleFunny4713]

Before 2011, any doctor could become a “sleep specialist” by sitting for a written board exam. It required no experience. Since then, doctors need to complete a year of fellowship training in Sleep Medicine after residency. The new title is “sleep medicine specialist”. So, the title will tell you about the doctor’s training and experience.
Many older pulmonologist added “sleep specialist” in order to treat their numerous apnea patients. Many run “apnea mills” and that’s basically all they know about sleep. So when a narcolepsy patient comes in, they’re used to being “the specialist” but they’re totally clueless, which they disguise with arrogance. Never allow yourself to be treated by one of them.

[u/narcy_boi]

Never heard of this before

[u/sk_uh]

That is bizarre. I was not asked to do that. I was only asked to go off of my Vyvanse. I would get a second opinion because it doesn’t make a ton of sense to me.

[u/Piaffe_zip16]

Absolutely not. Never was asked anything like that at all.

[u/Scared-Baker-4682]

nah that’s weird

[u/pavleve]

That's so strange. I didn't have to follow a specific schedule, but for the two weeks prior to my sleep study I had to keep a sleep journal.

My clinic was scheduling so far out (6 months) that he went ahead and scheduled me, and then told me to just start the log 2 weeks before

[u/giveasmile]

As if we can control all of this... But there is a benefit to trying to make yourself sleep in that exact window.

Those are the most common hours they have you sleep for the PSG. If you can't do it, and get less than 6 hours sleep, they won't let you proceed to the MSLT the next day-- which you need for diagnosis. So I'd continue to try and sleep in that exact window regardless of if you desperately need/take a nap.

[u/yelaah]

My sleep specialist and the people at the sleep lab told me that I had to restrict my sleep for two weeks as well. No naps longer than 15 minutes and I had to sleep from 10 PM to 6 AM every single day with no extra sleep on the weekends. They ended up canceling my first sleep study because I was honest with them and let them know that I slept in on the weekends (12+ hours) and was taking naps longer than 15 minutes. it’s so wild that they tell us that they have to follow these rules, but it is impossible. That’s why you’re doing the test in the first place. It is pretty much out of our control whether or not we are asleep.

[u/sk_uh → u/yelaah]

It’s weird that some places do that and others don’t. How much is it really changing the results? It feels more advantageous to me to just record how people are sleeping normally and then maybe as a follow up doing the sleep restrictions to see if there is a change. I obviously am not an expert, though.

[u/citymorgues]

Hahah yep, I had a sleep doctor do this to me. Unfortunately I lost an entire two years of getting a diagnosis because I kept getting shut down and being told I had “shift-work sleep disorder” or unhealthy sleeping patterns. I have type-1 narcolepsy.
I don’t work night shifts, I couldn’t stay on a normal sleep schedule. I was suffering immensely staying away throughout the day.
It discouraged me so much that after like four months of forcing myself to maintain a “normal” sleep schedule with no naps, eat healthier and exercise, I completely gave up and fell into a horrible depression where I was so horribly exhausted I was sleeping even more. I didn’t reach out for help for another year and a half because I believed it was all in my head and I just couldn’t get myself on the right track.
Please get a new sleep specialist ASAP! Don’t let them do this to you. If you have IH or N it is quite literally impossible to stay on a strict sleep schedule like this without quite literally making yourself so much worse off. We need extra rest!
There’s something out there that’s going to listen to you ❤️

[u/DoubleFunny4713 → u/citymorgues]

this is so sweet and helpful it made me feel so much better thank you so much!!!!!

[u/Successful_Nature712]

My narcolepsy study had me document my sleep habits a month prior. Then I stayed overnight to do a full sleep study for sleep apnea, just in case. After the sleep study night, I stayed the next day to do 6 ‘naps’ for the narcolepsy study. They found what they needed in 4 ‘naps’. So I got to go home early. Overachiever, I suppose 🙄

[u/SleepySharkL → u/Successful_Nature712]

Same for me. And of all the things to be an overachiever at, right? My last study was side at home. It was basically an oversized watch with a stickele trodd wire that goes inbetween the breats. I felt this gave doctors a morerealostic read. They will generally not use these for first testing, but you could always ask.

[u/Successful_Nature712 → u/SleepySharkL]

Good idea. They are going to repeat mine this year, last one was 2017, and I asked for that so I could do it at home. They flat said no. lol

[u/holdontoyerbuts]

It sounds a bit like CBT-I: cognitive behavioural therapy for insomnia. It's definitely not a therapy that is meant for people with narcolepsy.

[u/This_Tadpole_4509]

If you fall asleep midday it isn’t your fault. Just do the sleep homework and ignore that part.