Narcolepsy and the cost of a good night's sleep

[Lachrymose]

Cross-posted from another forum I'm on:

This is mostly just me venting here.

I'm pretty upset at the moment.

Background: I have had narcolepsy since I was 16 years old. I am now 34.

For 18 years I haven't had a single, solitary day where I've gone to sleep and awoken feeling refreshed.

Not. One.

It's been mentally taxing and a few years back, I actually attempted suicide. It wasn't pretty and I'm honestly past that. It doesn't mean I'm not depressed a lot because of this. However, I lead a fairly successful life and do what I can. I could do so much more without this condition, though. Or at least temporary relief from it.

It's amazing how many people don't understand this. How many friends/family I've had tell me "everyone's tired all the time" or "I worked through *my* depression, so you can too!"

But, I have a few who are (slightly more) understanding than that. I also know there's at least one other person on this board who knows pretty much exactly what I'm going through.

Now, I'm not writing this to feel sorry for myself, so to the point.

I've discovered that a drug called Xyrem appears like it would be *extremely* beneficial to me. It's a legal form of GHB (date rape drug, basically), extremely controlled, and only dispensed from one pharmacy location in the country.

It allows a person to go into the deep sleep that is so evasive in people with narcolepsy.

I called my insurance provider, Kaiser, to see if this was covered and could be prescribed for me.

The head pharmacist (wonderful person, seriously), called me back after gathering some information.

What she found out:

- no, it's not covered by Kaiser.
- yes, it could be prescribed if I really wanted it
- it would cost me about $1500.00 a month

Uggh.

So close, yet so far away. I would just like to have one night where I felt rested.

Sorry for the rant. If anyone knows of any program that could possibly help here, that would be great. The thing is, I'm not exactly financially well off, but I'm comfortable. But the cost of that drug would be about half of my income.

Thanks for listening/responding/whatever.

ETA: I may have outdated information. Some people online are claiming that the price has risen to between $5000.00 and $7000.00 for a months supply. Bwahahaha...what?

[crashhelmet]

I take it other OTC and Prescription sleeping pills haven't worked for you?

When I was younger, I had issues with hypersomnia. I'd sleep for 12-15 hours if you didn't forcefully wake me up. Over time it faded and now I get issues with insomnia. Although that's mostly due to the inability for my beat up body to get comfortable. Especially in cold weather.

I hope you find something that works for you.

[Lachrymose]

No, OTC doesn't help at all.

They just leave me feeling both tired all day AND groggy. I'm pretty sure they only keep you in light sleep as well, anyway.

Just to add additional info, I do take stimulants during the day. But they only help a bit.

Still, to be able to just jump out of bed feeling refreshed is the thing. The struggle to get out of bed each day when you feel like you haven't slept at all is just insane sometimes.

Oh, and to comment on the insomnia. Interestingly enough, that is kind of part and parcel with the narcolepsy as well, much to the surprise of a lot people. Sometimes I just can't fall asleep. Other times I wake up every hour during the night, sometimes more, sometimes less.

[Aethian]

Have you tried calling the company itself? They might have a more affordable option.

[BlaqueKatt]

orexin-RA-1, should be available soon. Developed for treatment of Narcolepsy.

also Modafinil (Provigil) and Armodafinil (Nuvigil), are currently available, these are actually non-traditional stimulants(different class than something like Ritalin, they don't affect the nervous system), talk to your health care provider.

Also the medication you mentioned, Xyrem(sodium oxybate), has a central pharmacy you can call, to see if it's possible to get assistance, check the website

[Lachrymose]

Have you tried calling the company itself? They might have a more affordable option.

I think I'll do that.

Thanks for mentioning the orexin, BK. Have you actually worked on that yourself?
And I take Nuvigil now.

[BlaqueKatt]

I think I'll do that.

Thanks for mentioning the orexin, BK. Have you actually worked on that yourself?
And I take Nuvigil now.

it's been through stage II human trials in Switzerland, and I just work with food, and "nutritional supplements" the pharmaceutical testing is another department. No idea what all their working on, and couldn't say if I did , plus <company> is HUGE, and constantly acquiring more companies(they expand by buying out smaller groups, and keeping the current staff, less underhanded than sniping workers, my original employer company was purchased because they wanted the owner as a consultant, the rest of us were considered a bonus.)

[draco664]

According to wikipedia, the company that manufactures the drug has a patient assistance program for people who can't afford the drug and their insurance won't cover it. I suggest calling them and inquiring about the program. Worst case is they say no.