Xywav for Idiopathic Hypersomnia User Reviews

• JEF...
• Taken for 1 to 6 months
• November 6, 2021

"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."

• bro...
• Taken for 2 to 5 years
• July 10, 2023

"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."

• Sle...
• Taken for 1 to 6 months
• January 17, 2022

"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."

• TSm...
• Taken for 1 to 2 years
• October 16, 2023

"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...
• Taken for 1 to 6 months
• November 14, 2021

"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."

• Sal...
• Taken for 1 to 2 years
• August 29, 2024

"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."