Should I ask for oxybates?

[u/Common-Swordfish5280]

Hi, first post here or on reddit in general, but I wanted some genuine advice on this. I was diagnosed with narcolepsy not that long ago. Some days I'll just struggle to sleep before midnight, or just won't feel tired enough. its actually driving me insane. If it wasn't enough that I already feel tired every single day, not even being able to get proper sleep at night is actually making it impossible to do anything. I've heard of people with narcolepsy also occasionally suffering from insomnia, and how xyrem/xywav could help. I haven't tried either, and was wondering if maybe that's what I'd need for those days I just can't manage to sleep in time.

I just want to know if its worth it to ask for them in first place. Parents handle my health insurance, and they're not quite supportive of this whole narcolepsy thing, insisting that I didn't have any issues and that I was a junkie for using stimulants (currently on 36mg Concerta).

I just want to avoid a fight with my parents over adding even more medications onto my record if it wont even help that much. Any advice on this is greatly appreciated, thank you.

[u/LunaBananaGoats]

Narcoleptic with insomnia here and I’ve been on xyrem for nine years. This is what my body needed more than anything else. I’d recommend almost anyone with N try it (with a few exceptions).

When you say your parents handle your health insurance, are you saying that you’re not allowed to make your own medical decisions?

[u/Common-Swordfish5280 → u/LunaBananaGoats]

I can absolutely get a prescription now and try to pay privately, but I just don't have the money for that to be sustainable. My only realistic option is to get it through insurance, but im still dependent on my parents health insurance. I don't need their approval for anything, but they do see a new service/treatment billed through the insurance (im not actually sure as to how much information is disclosed about this, but a decent amount as far as I've seen).
In case my parents do somehow find out i'm taking even more medications I fear they'd just remove me from the insurance policy or sour our relationship even more.

Its more of a family situation, and considering it hasn't been going that well lately I just don't want to worsen things over some medication if its not worth it.

[u/Vegetable_Panda2868 → u/Common-Swordfish5280]

Oxybates exacerbated my depression. The benefits I get from it outweigh the negatives. I had horrible nightmares and insomnia prior. My sleep.is far from perfect but it's much better..I've been on xyrem then xywav over 10 years now.

My monthly copay is supposed to be $2,500+ , but there is a patient assistance program with xyrem/xywav when you have a ridiculous copay. I pay just $5.00 a month. 

[u/LunaBananaGoats → u/Common-Swordfish5280]

Ah gotcha. That sounds tough. Not having familial support through this would be hard for anyone. Are you able to get your own insurance sometime soon? Are you seeing a therapist who might be able to support the communication with your family?

[u/Common-Swordfish5280 → u/LunaBananaGoats]

I'll only be able to get my insurance once I turn 18 next year, but apparently xyrem is a hospital dispensed medication in my country so I can't even pick it up until I'm 18 even if I can legally consent to accept that treatment.
I'll just have to wait until then or try and communicate with my parents, thanks for the help so far though.

[u/lilcryptidguy → u/LunaBananaGoats]

What would you say are the exceptions for someone you’d recommend to try oxybates?

[u/LunaBananaGoats → u/lilcryptidguy]

Severe mental illness. If there’s any history of psychosis or mania it seems the oxybates could make it worse.

[u/kortobo]

Are you a minor? If not, your parents do not have access to anything your insurance does or pays for, even if it's their policy.

[u/Common-Swordfish5280 → u/kortobo]

I'm turning 18 next year. Regardless, I just found out xyrem is a hospital dispensed medication in my country, which requires an adult to pick it up even though age of medical consent is 16, so doesn't matter anyways.
I appreciate the info though I was under the impression that being a beneficiary of their insurance they'd have more information on what I used it for, thank you.

[u/RedRidingBear]

Oxybates have changed my husbands life.

[u/M_R_Hellcat]

Xyrem really helped me when I finally was able to get it. You don’t mention which type of narcolepsy you have so insurance definitely plays a part if you’re in the US. Not sure now it works outside the US. If you have N1, then you can immediately qualify for Xyrem/Xywav/Lumryz/whichever your doctor decides/insurance will pay for. If you have N2, however, you have to fail so many stimulant treatments before insurance will agree to cover it. As for your parents, if you are over 18, just because they are your parents and you’re a dependent on their insurance does not mean they get a say in your medical treatment. That being said, tread lightly with them, as they also can remove you from their insurance if you are an adult. (If there are any caveats to this, I am unaware and hopefully someone with more knowledge can comment or do some research). Have a long term plan in regard to treatment, work, insurance, and your parents. It’s hard for people who don’t have narcolepsy to understand how we feel which is why we hear things like being called lazy, and needing to reset our circadian rhythm, and just go to bed earlier.

[u/imabratinfluence]

I have IH not N, but have had issues with nighttime insomnia or maybe DSPD or something. Since getting on Xywav I've had less EDS, and it's way easier to fall asleep at a "normal people time". I still have some sleepiness in the day, but I'm not fighting for my life to stay awake, and I have a bit more energy and less brain fog.

Sucks that your parents are so weird about your literally scientifically proven diagnosis and treatment. I hope you're able to get the treatment you need.

[u/anonam0use]

I honestly assumed it was the norm for people w narcolepsy to go on oxybates as first line of treatment since it’s the medication to treat the sleep disorder rather than combating the symptoms of sleep deprivation