FDA Approved Drugs and User Comments: XYREM

User Comments:

For Narcolepsy “Have only been on this drug for a very short time (a few weeks). Thought I could share my experience so far for new prescribers. Besides having to eat dinner earlier in the night and having a bedtime at 20 years old this medication has been amazing. I take my first dose while laying in bed ready to sleep and the second 3 hours after that, Making sure I don’t eat anything 3 hours prior to first dose. I wake up around 4 hours earlier than I used to feeling ready for the day and very well rested. I have experienced very few side effects besides my limbs feeling numb for a few minutes after first dose and a pretty bad headache only right after I take my doses. I plan on increasing my dose as prescribed and really hope this stays as successful as it has been. Honestly feel like this has changed my life and I’m finally feeling like I get a normal nights rest every night.”

SleepyAud (taken for less than 1 month) February 27, 2018

For Narcolepsy “Diagnosed at 27 and changed my whole life using this drug…..never knew what life was.”

EllatheCanadian January 7, 2018

For Narcolepsy “My daughter was diagnosed with narcolepsy when she was 12. Severe and accompanied by cataplexy, hallucinations in REM within 90 seconds, all facets of sleep disorders seemed concentrated in her young body. She never got to drive a car. Narcolepsy dictated her quality of life. On methylphenidate, which increases heart rate, for 27 years, she convinced her Dr to help her get in a sodium oxybate program. Sodium oxy dosage increased per instructions over time, had delusional, withdrawn effects and slowed speech. 4 months after starting sod oxy she was found dead in her apartment from a massive heart attack. Accumulated effects from yrs of stimulants? A sudden jolt from sodium oxybate ? Congenital defect? She did not abuse meds. CAUTION”

Shakespeate November 3, 2017

For Cataplexy “I have narcolepsy with cataplexy and also sleep apnea. I started taking Xyrem about 3 years ago, and the difference in my ability to function is phenomenal. No more hypnogogic/hypnopompic hallucinations, drastically improved cataplexy, very few episodes of sleep paralysis. And for about 5 minutes before it knocks me out, I get a buzz of epic proportions. Sadly, xyrem has gone up more than 800% in price. It costs over $5,000 per bottle, and I’m on 3 bottles per month. Unwanted side effects that I’ve experienced are, during titration (dose increased by Dr) 1. I had trouble breathing properly. 2. the first night of my highest dose (4.25) it knocked me out so hard that I wet the bed. 3. Wicked vocab. I swear a lot during a dose. idk why!”

Rizzamae (taken for 2 to 5 years) October 29, 2017

For Narcolepsy “I tried this off-label because I was always waking up tired and never felt rested. I took 4 mL before bed. The results were incredible. Woke up exactly 4 hours later feeling alive and not exhausted for the first time in years. I’ve since been diagnosed with narcolepsy so I know why this medication was so effective for me. Unfortunately I can’t afford it so my only option is dexamphetamine which doesn’t help me much.”

Sleepy Bill October 12, 2017

For Narcolepsy “I am 29 years old and have had narcolepsy since I was 7. I started Xyrem after three doctors recommended it. 9g/night in 2 doses, & finally get the deep sleep I never had. I dream, but not the endless series of exhausting dreams that feel like memories, Nor dreams during the day! Some mornings I wake up feeling fantastic and motivated, some mornings I think, ‘just one more hour!’ and need a cup of coffee or tea to get started. I think that is what normal feels like. Hardest part is not eating 4-5 hrs before, bc I like to go to bed around 8:45/9:30pm. Basically I have my life back and wish I’d gone on Xyrem years ago instead of being afraid of side effects that haven’t even happened on max dose. Thank you, Xyrem, for giving me my life back!”

Sir Wakealot (taken for 1 to 6 months) October 6, 2017

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