Generic Name: Xywav (calcium-oxybate-magnesium-oxybate-potassium-oxybate-sodium-oxybate)
For Idiopathic Hypersomnia "I knew I had the answer after the first night taking Xywav. I have struggled with excessive daytime drowsiness most of my life but now I am awake before my alarm and have no desire to nap. This is better than I could have dreamed. I have been living life with one arm tied behind my back. I now have full use of both… a new lease on life. I never knew life could be so enjoyable. I thought everyone was as sleepy as me, just that everyone else had self-control or discipline. I am so grateful for Xywav."
For Idiopathic Hypersomnia "I started Xywav in November of 2021, shortly after it was FDA approved for IH. I slept upwards of 20-30 hours at a time and could barely stay awake for more than 4 hours at a time. It was horrible. I tried everything. Stimulants made me feel 'fake awake' and I was exhausted yet couldn't sleep. It was a horrible feeling. Xywav took 6-8 months for me to get on my correct dose and it was a tough trial period. However, my best advice is STICK IT THROUGH. The end is worth it. I am on 3.25/3.0 and if I go up to 3.5 for my first dose, I'll be super sick the following morning. This drug has saved my life. I can stay awake and focus and succeed in life now. I take no naps during the day but can take a quick 20-40 minute nap and I feel refreshed waking up. You do need a strict schedule and go to bed at the same time every night."
For Idiopathic Hypersomnia "I'm just about 30 years old. I've always known I had sleep problems but never thought of it as a medical condition until the idiopathic hypersomnia became majorly disruptive in my life. I tried so many stimulants and sleep aids, and nothing seemed to work. This drug has greatly improved my life over the last 3 months. The dosing of the drug is still tricky for me. But I feel that I have my life back. I used to not eat dinner because I was too tired after work to eat. And now I have enough energy to cook and even clean sometimes. I take 3.75g once nightly, and with 6 hours of sleep, I felt better than I ever did from 12 hours of sleep before I started taking the medication. I don't feel like Superman, but the improvement is noticeable. No negative (besides during the first month) side effects besides a bit of teeth grinding in the middle of the day and making weird noises at night sometimes. Night sweats are common, but with the cold air cranked up, sometimes I never notice."
For Narcolepsy "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!"
For Idiopathic Hypersomnia "Xywav has been a game changer. I finally got my quality of life back. I'm functioning somewhat normally. My cognitive function has increased. I live an active lifestyle now which has resulted in weight loss. Life is worth living now."
For Narcolepsy "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."
For Narcolepsy "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."
For Narcolepsy "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!"
For Idiopathic Hypersomnia "After 6 weeks of minimal response, I awoke and suddenly the room was spinning. That was my last dose. It's been 3 days...headache and nausea persist along with a loss of visual acuity. Withdrawal symptoms can last 3 to 14 days according to the literature. Wow, I'm still on day 3."
For Narcolepsy "Like a lot of people with narcolepsy, I suffer from severe fragmented nighttime sleep. So in the daytime, stimulants only take you so far when your nighttime sleep is trash. My doctor prescribed me Xywav, and I was skeptical at first, but after so many trials and errors, I wake up feeling more energetic, and the stimulants I take during the day are almost like icing on the cake for lingering symptoms. However, there is a downside. Most doctors write the prescriptions where you increase in increments of 0.75 grams every one or two weeks. This is too aggressive for most people and can cause symptoms so unbearable that it causes people to quit. I would recommend titrating at 0.25g a week or two as it can become more tolerable for most people. Secondly, most people dislike the taste, but I don't really mind it."
For Narcolepsy "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"
For Narcolepsy "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!"
For Narcolepsy "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."
For Narcolepsy "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!"
For Idiopathic Hypersomnia "Xywav has given me my life back. It obviously didn't fix everything, and my sleepiness still affects my day-to-day life, but Xywav made it manageable for the first time in YEARS. It is incredible. I will say, getting my body acclimated to the medicine was not fast nor easy. For the first six months, I was intensely nauseous most of the day and would violently retch, rarely actually throwing up. I had no appetite, and the thought of any food would make me retch, so I never ate and was starving, so I lost a ton of weight. I would have to force myself to eat and have a trash can next to me just in case I threw up. It also made my hair fall out for the first 6-8 months, but it is better now too. Now my appetite is significantly improved, and I am rarely sick to my stomach. All this to say how worth it Xywav still was despite my side effects. I take 2 doses of 3g, so 6g total/night. Not a great taste, but bearable. I get around 6-7 hours of good sleep, and it has been life-changing."
