Ok this going to be alot so ill break it up into sections

First of all, xyrem/xywav is the only drug approved to actully treat narcolepsy, all other medication just alleviated symptoms

Getting started on it can be a long process but it wasnt for me. The medication cost like $28000 a month, so insurance companies want to deny coverage and want to have proof that tou have tried other less expensive treatments first. I know it sounds horrible, the only medication that actully treats narcolepsy which means it should be the first treatment tried but becuase insuranve its a last resort drug becuase of cost. Shameful but reality. Keep fighting the paperwork fight untill you are approved or adamently denied. Jazz pharmacy which is the only pharmacy to produce this drug has assistance programs and most people have a low or zero copayment, even if insurance denies.

The medicine is actully a low dose form of ghb the date rape drug, i know that sounds scary but this medication has the possibily to really turn your symptoms completely arround. It is sent out from a central pharmacy by mail that you have to sign for or pick up at a fed ex location. You should probably have it in a locked cabinet becuase of how expensive and how dangerious it can be in the wrong hands

When you get approved a pharmacist will call you from jazz and walk you through the whole process, they will explain all the possible side effects and comon side effects aling eithb instructions, jazz has amazing staff that are very helpful and available 24 hours a day. They asign you a personal coach to ensure success with the medication. The can also do a unboxing video chat with you as well to go over the medication instructions

It comes in liquid form and measure the dose you start on and then mix it with water to activate it. Right before you go to sleep, you set an alarm for four hours, then actully in bed you drink your first dose snd leave the second dose next to the bed. People have had bad side effect if they were started on a normal dose so they and everybody body has a diffrent theaputic dose. Sooo the pharmacy starts you on a very low dose and increases the dose once a week untill you find what dose works best for you. Sooooo the first couple weeks you will be on a dose that will most certainly be underdosed. But less side effects and finding your perfect dose is worth it. You have to stop all medication that make you drowsy becuase it will oversedate you if you combine with other sedating medications and jazz coach will go over all your medications before hand.

Now onto my experience

I started on 2.25 gram dose and literally did not sleep the first week, now i have terrible insomnia and had to stop my lunesta so i kinda expected this. When the medication kicked it i kinda felt drunk like 1 too many shots. So walking or doing anything was a little dangerious but not impossible.... let me make this clear though with not sleeping at all and feeling weird all night, i was able to get out pf bed in the morning without a struggle and i felt better the first day, without even sleeping. I felt it fixing what was broken on my brain and i wasnt even sleeping yet.

The next week i upped my dose as instructed and began to sleep on the second dose but still maybe sleeping 2 hours a night, everyday feeling better and hopeful. The nexr week i bumped up a dose only half of what i was suppost to, to avoid side effects. And i began sleeping sometimes kn the first dose and always on the second dose. Every day feeling better and cataplexy completly gone.

Now im on 3.25 grams and sleep most the night and most mornings i wake up before my alarm and im able to get out of bed without a struggle, im down to maybe one mild sleep attack a day and i have ZERO side effects. (Besides the feeling i get when the medications working but im not sleeping).

Some people cannot wake up when the medication is full effect so its concerning to parents but ive found i can attend to my child if she needs me its just a sketchy, like im wobbly. I just dont carry her or wake up my husband if i need to. Some people experience nausea or diarrhea or anxiety as a side effect, some treat these symptoms and keep taking the med but some cannot tolerate the side effect and have to stop. I currently take half the modafinil i was taking because i dont need as much and have less symptoms that way.

The medication taken properly has no addictive properties and no withdrawl symptoms if you take any sedating medication like benadryl or antianxiety med or drink alcohol you simply skip yhe nightly xywav, but you go back to narcolepsy unresortive sleep and probably be sleepy the next day but no withdrawls.

I would suggest trying it as quickly as possible if it seems feasible, good luck, i will be praying for you

Wow, this is really helpful! Thank you so much. 💜

I've been going back & forth between starting Xywav or Wakix - which I know are 2 very different meds that do different things! But I think it'll ultimately boil down to what insurance is willing to cover or not. I've heard that some insurance companies won't cover Wakix for unless you have narcolepsy w/ cataplexy (I have type 2), and the cheapest price $3000+ for a 30 day supply if they deny it. 🙃

I'm mostly just nervous about the side effects and potential drug interactions. Some of the psych meds I'm on for anxiety/depression can supposedly have major interactions with Xywav, but stopping them is not an option for me right now.

Calling the pharmacy line would be best, they can give you information in real time about your specific medication, you dont have to have a perscription to call, they are super friendly, maybe if you take the antidepressant in the am the two wont interact, it cant hurt to ask

18335335299 i think

Jazz will give it to you for free if you qualify and insurance doesnt cover it

That's good to know! And it's encouraging to hear that Xywav has helped with your nighttime sleep as well. I also have insomnia and have been on Lunesta for a couple of years, but I'm pretty sure it stopped doing its job a while ago.