Xywav for Narcolepsy User Reviews

• Momof
• Taken for 1 to 6 months
• March 17, 2022

"So I was on Xyrem for 4 years and it was good but I needed a stimulant most days because is started to fell tired throughout the day. I switched to Xywav a month ago. Holy almost vomiting the first 2 nights. The taste is totally different but have a gag reflex almost immediately. Better now. Did sleep walk one night one it. I switched for the lower salt and I noticed I don’t have added inflammation (I was never on a salt restricted diet but 1650mg of salt at bed is a little much for anyone). Big thing to know!!! It causes you to get hungry almost immediately. You really have to fight the urge to eat. Women and obese are at higher risk. Once you get over the hump smooth sailing. Everyone has an opinion but for me I am enjoying the difference. My son has narcolepsy and his dr said Xywav is too new for him. I don’t think so but at least his Xyrem is still doing it’s job. We so need a cure for this. Good luck on your journey."

• severe...
• Taken for less than 1 month
• May 9, 2022

"I never had Xyrem. It is the first week that I’ve started on Xywav, and on the very first night of taking it I noticed tremendous difference. Narcolepsy has been ruining my life by causing me to sleep it away. I get severe Excessive Daytime Sleepiness, it felt like I was asleep 18 hours a day, and yet I was never refreshed / was still severely exhausted. Xywav has completely changed that. Now after 7 hours of sleep, I am refreshed. I haven’t needed a nap these past couple of days. It’s life changing for me. I’m so happy and thankful."

• MTnarco
• Taken for 6 months to 1 year
• July 18, 2021

"I was on Xyrem for 13 years. Everything was great. In January my doctor switched me xywav. At 1st, I had the most debilitating anxiety and I’d wake up with my arm completely numb from sleeping on it. It was miserable. My doctor suggest I scale down a bit until I was adjusted. It helped the anxiety but not my arms so now I sleep on my back. I’m in the process of switching back. because I gained about 15 lbs since switching and I miss the morning pep in my step. Now, I always hungry. I was ok with this since xywav is supposedly “healthier”. However, I just found out xywav has sucralose in it which is in Splenda. I don’t put that stuff in my body normally. Fake sugars cause sugar cravings. No wonder I was craving cookies and carbs. I don’t have heart issues, so the increased sodium is much healthier than putting Sucralose in my body. Hopefully I don’t suffer debilitating anxiety and I can loose this weight!"

• Sleep...
• Taken for less than 1 month
• February 2, 2021

"I was on Xyrem for about a year for Idiopathic Hypersomnia, it worked pretty well but I was getting side effects from the super high sodium content like muscle fasciculations, tinnitus, and headaches. Most of the side effects have greatly reduced now that I'm on Xywav, but unfortunately Xywav doesn't seem to be as effective at controlling my sleep inertia as Xyrem did. I noticed that my irritability increased after switching to Xywav. Hopefully they're just temporary side effects!"

• Bless...
• December 17, 2020

"I'm female with Narcolepsy +Cataplexy with severe sleep apnea for over 3 years now. I was up vomiting all night the 1st 2 nights and felt bad so I gave it a break for a night and tried it again with nurse approval to try with a cracker before taking and my sleep doctor said to add some crystal light none sugar non caffeine to add some flavor which helped out tremendously. It takes 30min-1hr to fully work. No vomiting which is a plus but now side effects of waking up every 3hrs on my own when its time for the next dose and I lay awake again until that one kicks in. And now for the past 2 days since starting my bigger dose upon waking up 3 hours later I'm having muscle spasms that feel like restless legs but in my arm only when waking up and its not a great feeling waking up to this I feel horrible from last night meds. I've been awake since 6am on my own no alarm its good compared to before this medication I was sleeping 12+ more hours and hard to motivate"

• Prius
• Taken for 1 to 6 months
• February 5, 2021

"It is not bad! Not quite as strong as Xyrem. Totally love the lower sodium. It is about just as good. Weird side effects during transition like headache and nausea, but those go away once your body sort of switches on to xywav."

• Sandra
• Taken for 10 years or more
• November 21, 2023

"Having narcolepsy and several other sleep issues caused me to sleep 12 to 14 hours, and I still felt tired. I cannot tolerate other medications that increase your heart rate or make you 'speed'. I was tried on Xyrem first, and it worked well enough to prevent my sleep paralysis and auditory hallucinations. This, in itself, was a great relief as I have an anxiety disorder also. I didn't need to sleep over eight hours and actually felt less tired. I didn't like the amount of salt in Xyrem as I have high blood pressure, so I asked to switch to Xywav, which doesn't have all that salt. I am still tired during the day, but not like I was before. Since I can't take stimulant drugs, I'm at an unusual disadvantage. But Xywav saved me from the horrible sleep paralysis that occurred pretty frequently with me. It was terrifying to me. I would worry every time I laid down to sleep, praying I wouldn't get the loud ringing, then feeling of falling, and then complete paralysis! Xywav stopped this completely!"

• Cirrus
• Taken for 6 months to 1 year
• November 2, 2023

"I had told doctors (and been ignored) for over a decade that I sleep terribly, and in my 30s, one finally listened. They did the Apnea tests before the narcolepsy one, and thankfully it came back initially inconclusive because I started apnea treatments first (after analysis I definitely have it), and it made it worse. I was exhausted, barely functioning. The FIRST NIGHT I was on Xywav, I probably slept more continuous minutes than I had any night of the two decades previous. It was revolutionary, even from the first low doses. I'm so angry at every doctor who ignored me because it's like I have a life back that I didn't even realize I was missing. You mean everyone else doesn't constantly fight exhaustion from the moment they wake up? Who knew!"