1. Your concerns are valid and a lot of good points have been raised in this thread. The bottom line (from someone who was a pediatric patient when diagnosed) is that in the eyes of your insurance company there is a difference between “doctor witnessed cataplexy in office” and “patient reports episodes of cataplexy” when trying to find a reason to deny benefits and medications.

  2. From 12-18 all my doctors were shocked every time I tested negative for mono, as that's the only reason they could think of for my fatigue 🙄 viral infections are believed to trigger narcolepsy in predisposed people though.

  3. “It’s not mono” was one of my most frequently used phrases from 13-17. But they still tested me for it every other month as if something would magically be different.

  4. Thanks for the info. ExpressScripts for me is the company that determines prescription approvals, copays, etc. They are also a pharmacy, but I usually go to CVS, because delivery can be dicey.

  5. You’re correct about ExpressScripts being willfully ignorant. One year I had them approve 2.23 200mg pills/day instead of the 3 I needed. My doctor called them up and asked what medical school they graduated from that gave them the ability to better judge what was medically necessary for his patient, not to mention who I was supposed to split .23 of a pill. Now they will (after several appeals and angry letters) cover 600mg of modafinil for me, but ONLY if my dr writes 2 separate scripts - one for 400 and one for 200. Oh the arguments I’ve had with pharmacy techs who tell me I can’t fill two scripts for the same drug….

  6. Notify your doctors office if you haven’t already, they should be able to help with this. You can also see if your insurance has patient advocates available. They can get on calls with you and help you figure out what the issue is. That’s how I learned that for my provigil, I needed a PA for the drug itself, and then a second PA for the dosage, and then I need the script to be written a particular way. No one ever mentioned it or said which authorization was being rejected (the dosage was the issue). Drug gets approved and dosage rejected every time. Eventually my doc writes an angry letter saying the company will be liable if I am under-medicated. Sometimes I get my boss to contact corporate headquarters and tell them they need to intervene on my behalf with the insurance company because I can’t work unmedicated. It shouldn’t be this difficult!

  7. Friend: "Omg that sounds SO nice. I wish I could sleep like that" has happened three times since being diagnosed

  8. Right before I started my final semester of college, I had a sleep doctor (who had been treating me since diagnosis 4 years prior) tell me that I should only look for ‘third shift, dead end jobs’ (their words , not mine) because that’s all I would ever be able to manage - and they doubted I could even do that. I switched doctors, found new meds, and got a 9to5 job purely out of spite.

  9. Being active always feels so wonderful in the moment. My scumbag brain always convinces me that this time it will be different. It never is. PEM hits every freaking time.

  10. Thats what i was figuring what would happen. I definitely don't know what specialist to go to. I got sent to Michigan rheumatology and they cleared me of any autoimmune disease, but since my labs are off specifically with an antibody presence thats all they send me to, and to neglect to consider any other options like maybe infectious disease or something else. So I want someone to give me a baseline better fucking idea on where to go

  11. I’ve gone through the “medical mystery” process more than once for some chronic illness issues. It’s really rough. My advice is to search for one of two types of PCP: A young doctor who is still building their practice (When they don’t already have a huge patient load it is easier to get in to see them on short notice and they often are more interested and engaged in unusual cases. Young doctors are less likely to give you the brush off in my experience.) Or find a doctor who lists chronic illness management as a clinical interest (go to the practice’s website and you should be able to read the bio on every doctor there.)

  12. As someone who has had several sleep studies at MM and other local providers, yes, those prices (both with and without insurance) seem pretty normal especially for the lab study. You could also check the other local health systems to see if there is somewhere that will take your insurance and has lower costs - St Joes/Trinity/IHA has sleep clinics in Chelsea and Ann Arbor. There is also Henry Ford, Detroit Medical Center, Ascension/Providence Novi but they be more difficult to get to depending on your transportation options.

  13. Isn't the solution, such as C-PAP, possibly about the same cost than the diagnostic test itself?

  14. I don’t have sleep apnea so I couldn’t really say. It wouldn’t surprise me if they were pretty similar. But there are a lot of options for treatment beyond just c-pap so testing is necessary to give your doctor the right data to make that determination. I’ll also say that sleep is so vital to your quality of life that you won’t regret any money spent if it helps resolve your issue.

  15. If you’re just looking to swim, Whitmore Lake HS does a pretty regular morning and weekend lap swim/open swim with lanes set aside for laps. Dexter’s community pool may or may not be doing it these days. There’s also the Dexter Wellness Center which has a 25 yd pool. Liberty Athletic Club is pricey but also has an indoor pool and is super close to the old west side.

  16. I decided not to when I realized I’d have to go off modafinil to conceive, be pregnant, and however long post-partum. Unmedicated I sleep 20+ hours a day so that’s just not going to ever be a possibility for me.

  17. In my own opinion, I believe that many with Type 2 may have Cataplexy, just generally of/to a minimal extent which can quite easily be looked over and really is not impacting their lives, being hardly notable except in a rare instance.

  18. I’m N2 diagnosed. When I got that diagnosis, we talked about cataplexy - did I fall down or get weak when experiencing extreme emotions. No. 15 years later, I have regular weakness I experience, head drooping, and dropping objects that seem like they could be low level cataplexy but have no emotional trigger or big collapse. I haven’t pursued it, but I wish there was more awareness/education about cataplexy that isn’t the hallmark “collapse to the ground, incapacitated” experience.

  19. N2. Work a 40 hour day job and do another ~15hrs at a second job. Have been doing so for. 2 years now, worked 30 hours for 8 years before that, 20 hours / 2 years, 15 hours / 1 year (all of that is the same job, with my a 5-20hr second job).

  20. I have N2 but find my symptoms fluctuate in severity where I’ll have an unusually bad couple weeks every 4-6 months or so. When faced with unusual levels of stress, my symptoms get bad. There’s a lot the don’t know yet, and while not degenerative, it stands to reason that your N symptoms/severity will change as your body does.

  21. You’ve gotten great advice here, but just to add, my doc told me once that while they didn’t report it, if I were to be in an accident (regardless of fault/cause) and car insurance companies investigated me for whatever reason and discovered the Narcolepsy I would be held liable in most situations. Not sure if this was true or not (I was 17 and they may have just been trying to make sure I understood the risks of driving with N) but something to keep in mind when evaluating risks of driving.

  22. In the US there’s methylphenidate, Sunosi, and others you can try. Plus the sodium oxybate nighttime meds (Xyrem/Xywav.) Keep trying the doc though because they will be the ones writing any new script anyway.

  23. Methylphenidate is facing shortages in some places. I’ve been trying a month to get mine filled. Super frustrating.

  24. Chiming in to say I’ve been on it for 12 years at the same dose and it’s still effective for me

  25. Mom of a narcoleptic here. I use Find My iPhone to wake my daughter up. It will still take a while sometimes, but it’s rare for me to have to actually go get her. I will also text her and will keep chiming her phone until I get a coherent response. She is able to answer simple yes/no questions so I will ask her more complicated questions to verify she’s awake (I.e. what day is it, what did you have for dinner last night, what color is your underwear, etc.) she has multiple alarm clocks, but she has to put at least one totally out of reach. My thinking is that her brain still needs to wake up. She’s not totally conscious right away, so we have to force that part. Once she’s fully conscious, she’s usually good to go. So basically anything that gets your brain moving in the morning. Simple math doesn’t work because it’s memorized. It needs to be something more complicated.

  26. You’re a lovely mom for doing this. My poor mom would call me on the phone to wake me up when I was away at college, I’d lie to her in my sleep claiming to be awake and rattle my pill bottles at the phone to make it sound like I’d taken my medication and then hang up on her, roll over and go back to sleep. She’d just call back in 15 or 30 minutes until I was coherent sounding.

  27. I take 600 modafinil at 7am. It starts to wear off at 4pm and is gone by 5pm (I don’t nap during this time). When I was unmedicated, 6pm-1am was my most reliable awake period. That didn’t change with the meds, so I usually go to sleep around 1am (but sometimes as early as 11pm and late as 330am). Guess I’m just a night owl because I’ve been on this schedule for 15+ years. It’s possible you’re experiencing something similar.

  28. Thank you for the response! Super helpful to know I’m not crazy haha

  29. Modafinil is a miracle for me, I feel so incredibly lucky to have found something that works so well during the day. And 6 hours might not be “healthy” but more sleep doesn’t make me wake up feeling anymore refreshed so I figure what’s the point.

  30. My original diagnosis was idiopathic hypersomnia because I didn’t meet the REM classifications for a narcolepsy diagnosis. It’s now been 8 years and after a new sleep study, my diagnosis is now narcoleptic. I’ve found that the line between the two is so incredibly thin! If IH wasn’t mentioned, I would bring it up and discuss it with either doctor. In my experience, the only difference I’ve had between the two diagnoses is that the narcolepsy diagnosis gives me more options for medication. No matter your ultimate diagnosis, your feelings are valid!!!

  31. This happened to me too. When I got ‘upgraded’ to N2 after a second sleep study I just assumed the first study was on a bad night (I was 16 and anxious about everything vs 22 and familiar with the process). My doc says that the line is especially blurry for folks with N2 vs IH. I had always told people I had N instead of IH anyway because at least people had heard of it (this was the Shallow Hal movie era with the stereotypical ‘falling asleep in your soup’ N character so it was a bit more recognized).

  32. Yup. Carbs and sugar are like 70% of my diet because it’s quick and easy ‘energy’. I know it doesn’t last, isn’t healthy, but good luck convincing my mostly asleep brain of that. During the fractured sleep portion of my nights I’ll get hunger pains so severe they wake me and I’m unable to go back to sleep until I eat something. My eating habits are a hot mess and I know it. My metabolism is beyond help at this point I’m sure. I’ve tried so hard to fix it but it’s energy I just don’t have.

  33. I was sleeping 20+ hours a day. My options were going to doctors or sleeping my life away. I chose to go to the doctors. I hated it so much but eventually found the right one and it’s made all the difference in my life.

  34. I don't make antibodies well either. Was constantly sick as a kid and turned out having CVID.

  35. It’s been 10 years and very few people know I was ever diagnosed with a movement disorder. Everyone knows I have post viral issues, some know about the narcolepsy (my OG diagnosis).

  36. Make sure you request your actual patient records too - from pharmacies as well. I used to do it once a year.

  37. If it makes you feel better, 400mg is regularly prescribed and some people take even more -I’m on 600 and had a doc that said he had prescribed as high as 800. Also, pill organizers are the best solution to the “did I take my meds” confusion we all experience sometimes.

  38. Meanwhile I’m on day 11 of being unable to get my methylphenidate filled because folks are switching from adderall to ritalin 😩

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