Xyrem and Headaches: What Users Say

• Cin...
• Taken for 10 years or more
• June 8, 2017

For Narcolepsy "My experience with Xyrem started about 12 years ago. The first few months were very hard. If I moved after taking it, I would vomit. The headaches were almost unbearable, and I lost weight, but after the first few months and 12 years later, the only side effects I have now are night sweats, and I can keep that in control if I drink enough water throughout the day. I can't even remember my life before Xyrem, but I know that it gave me my life back."

• Tru...
• August 1, 2010

For Narcolepsy "Xyrem actually worked! For the first time in my life, I felt like a normal person. Then, the migraines to beat all migraines began. I was awake but in so much pain, and the only thing that helped at all was packing ice all around my head. I hoped the headaches would go away, but after a couple of weeks, I gave up. I didn't want to be awake with that much pain."

• Fib...
• March 2, 2013

For Narcolepsy "I was given Xyrem two months ago to help with narcolepsy with cataplexy along with fibromyalgia. I had an expectation based on what I was told it would do that I would instantly be falling asleep. It didn't happen. Minimal effects. My neurologist started me on 2.25 mg x 2 at night. When we discussed the situation on my next visit and I talked with the Xyrem nurse, this was common on this dosage. He increased it to 3.0 for the next six weeks. I am now seeing some results in sleep, cataplexy, and narcolepsy. He did tell me that he increases to maximum dosage at much slower rates than any doctors to lessen the side effects. To date, all I have had was a slight headache several days, which might or might not be related. So far, so good!"

• Sle...
• Taken for less than 1 month
• February 27, 2018

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 the 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 the 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, I feel like this has changed my life and I’m finally feeling like I get a normal night's rest every night."

• Anonymous
• Taken for 1 to 6 months
• May 26, 2012

For Narcolepsy "I love this medicine! I am pretty young and had never had to take medicine before, my doctor started me on Nuvigil, but it gives me a headache every day. After a month, he started me on Xyrem. At first, it was too low a dose (1.5 grams), and I felt like I hadn't slept at all, but then he upped it to 3 grams, and I don't even have to take the Nuvigil anymore. I can get 8 hours and stay awake all day, I do get pretty sleepy after eating, but that is nothing compared to not having any kind of medications to help. I do feel sick if I wake up too early, or if I wake up on time, it takes an hour before I can stomach food."

• Me ...
• March 10, 2016

For Narcolepsy "Xyrem does help me get rested enough so my daytime sleepiness is less. And definitely helps with cataplexy. However, I just restarted it 5 days ago, and I have experienced nausea, headache, sweating. I really hope it subsides the longer I'm taking it."