Calcium oxybate / magnesium oxybate / potassium oxybate / sodium oxybate for Idiopathic Hypersomnia User Reviews
Brand names: Xywav
Calcium oxybate / magnesium oxybate / potassium oxybate / sodium oxybate has an average rating of 8.2 out of 10 from a total of 6 reviews for the treatment of Idiopathic Hypersomnia. 83% of reviewers reported a positive experience, while 17% reported a negative experience.
- brown...
- Taken for 2 to 5 years
- July 10, 2023
Xywav (calcium oxybate / magnesium oxybate / potassium oxybate / sodium oxybate) "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."
- Sleep...
- Taken for 1 to 6 months
- January 17, 2022
Xywav (calcium oxybate / magnesium oxybate / potassium oxybate / sodium oxybate) "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 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."
Frequently asked questions
- TSmith
- Taken for 1 to 2 years
- October 16, 2023
Xywav (calcium oxybate / magnesium oxybate / potassium oxybate / sodium oxybate) "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."
- former...
- Taken for 1 to 6 months
- November 14, 2021
Xywav (calcium oxybate / magnesium oxybate / potassium oxybate / sodium oxybate) "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."
- Spencer
- Taken for 1 to 2 years
- April 3, 2023
"Xywav is practically a miracle drug for me. 1 year ago I was on Sunosi and Vyvanse 50mg, while they helped they weren't always perfect, and my sleep inertia was getting worse and worse by the day. I knew my sister had been on Xyrem for a while and it worked for her Narcolepsy and Cataplexy, so I talked to my doctor. The first night of taking it I could immediately tell a difference, I woke up much quicker and while it was not perfect, I wasn't constantly going in and out of dreaming; I just woke up. Since starting, my sleepiness scale score has gone from 10 or 11, to 2. I have lost 40 pounds and maintained this new weight (I weigh 175 which is what I weighed before my Hypersomniac symptoms started), I feel truly awake, and I'm only on 20mg Adderall XR. The only side effect I can complain about it that when I raised by dose I would feel really flat (emotionally) for a day or so, but then I felt more like myself."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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- Drug class: miscellaneous anxiolytics, sedatives and hypnotics
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Xywav (calcium oxybate / magnesium oxybate / potassium oxybate / sodium oxybate) "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."