Hi, I am currently taking Xywav (low-sodium alternative to Xyrem) and it has been a game changer for me. Not going to lie, when I first began taking the medication I did not see much of a difference as the lowest dose is what they start new patients on before increasing. This helps lower the side effects etc. However, after a few weeks and increasing the dosing, I am extremely glad to have stuck with it. I am now able to sleep for 3 1/2 - 4 hours each time I take a dose, giving me nearly 8 hours of rest on the nights I am able to take two doses. I highly recommend Xywav but warn that it does not taste great. It’s worth giving it a try and certainly sticking with it for multiple weeks to be able to give it a fair evaluation. Hope this helps.

I am on Xywav which is basically the same thing with a lower amount of sodium. It has been life changing. I have been on it for three weeks. They have a nurse call you and go over all of the information with you. It is a very controlled substance and the only downside is that someone over 21 has to be home to sign for the med when it's being delivered.

After the first week, I had this day where I realized I finally felt like myself. It was so amazing to realize that these little parts of my human experience had faded due to my lack of sleep and to get them back was amazing! Now I am at three weeks and just have amazing days where I am feeling alive again. I have a sense of clarity when I didn't before. My memory is back, I'm feeling healthier, and I am even losing weight. Many narcoleptic people gain weight and i gained 100 pounds, even with extremely restricted diets. I do still have cataplexy but that may reduce in time too. I also still take the stimulants and was told by the nurse educator that many people do rely on both.

Personally, I found it to be horrible. Sooooooo salty, hard to take and I found it weird to get up just to take another dose. I stopped using it.

I was iffy about trying the medicine too, but it changed my life. Now, if you titrate up too fast, it sucks. I only went up 0.25 every two weeks, so I could figure out easily what was too much. I do recommend it, if other treatments don't work. For me, a sleep trigger for me is sugar, so I had to cut it out too. But I promise you, for most people, it's the best treatment yet BUT it isn't for everyone either

I was as well but haven’t started. I have no suggestions as I’m a bit nervous about it but wanted to know if you are on FB? There is a group specifically called Xyrem/Xywav support group. You can read about everyone’s experiences and titration which sounds extremely important. My neurologist told me to join for information. Hope it helps.