Sodium oxybate and Anxiety: What Users Say

• 80s...
• Taken for less than 1 month
• October 20, 2018

Sodium oxybate for Narcolepsy "This medication might have ended up being effective for me if I could have tolerated it long enough to get to an effective dose, but I quit taking it because of the side effects. My blood pressure increased from 110/65 to prehypertension, up to 138/90. It also caused mild tachycardia (rapid heart rate). My normal resting heart rate is between 64 and 68. On Xyrem, it was in the 80s and 90s the entire time. I also had anxiety in the morning hours, including a couple of panic attacks. I quit taking it when I became severely depressed."

• Ser...
• August 4, 2019

Sodium oxybate for Narcolepsy "My 11 y/o son has narcolepsy with cataplexy and has been on Xyrem for 5 months. It's been a game changer, but it isn't perfect. The pediatric neuro sleep specialist had him start on a dose of 2.25, which was WAY too high and made him completely incapacitated and violently ill. We joined a Xyrem support group and started over at 1.25. We titrated up slowly in .25 increments until we got to 3 ml twice a night--at that point, he was sleeping 4 hours per dose. Any more led to him vomiting. Jazz Pharma recommends everyone be on a 4.5x2 maintenance dose, which is insane. We have great results on 3 ml x 2--he sleeps, doesn't nap at all during the day, and needs no stimulants. He has increased anxiety, but Lexapro helps with that as well as preventing his C. X isn't easy to take--someone has to help him wake up to take it at 1 a.m. and prevent him from going to the kitchen to eat/X munchies--but it's the ONLY thing that has allowed him to get restful sleep."

• Sev...
• Taken for 6 months to 1 year
• April 18, 2022

Sodium oxybate for Narcolepsy "Worst drug ever. Some nights I wouldn't even sleep, I would be high and euphoric while I had to wake up at 5:30 a.m. to work in the hospital. Severe withdrawal as soon as it wears off, leading to panic attacks and not to mention severe depression. Felt like I never woke up refreshed, I was in a mental fog all day until it was time to take it again, and I built tolerance fast. Worst part, the side effects never mentioned were anxiety and depression until I called the hotline over and over. Even my doctor never heard of that happening. My eyes had discharged, my pupils were huge, and I even pointed it out to my doctor. Felt like I was in a daze for a whole year."

• col...
• Taken for 2 to 5 years
• December 14, 2019

Sodium oxybate "I have taken Xyrem for insomnia (not narcolepsy) for the past couple of years. I only take it as needed, and I take it if I wake up and cannot fall back asleep (I do not dose it at sleep onset). This happens very often since I have nocturia (I awaken to urinate 4-5 times a night). The key takeaways: Xyrem will put you to sleep, and it is a deep sleep. However, Xyrem has horrible side effects. At first, it seemed like it energized me for the entire day. Pretty soon, however, the drug turned on me to the point that I feel terribly tired and anxious (anxiety is moderate to severe) the entire day. Tolerance builds very quickly to its potent but short-lived sedative effects, so I only take it twice a week. If you are desperate for sleep, take it (if you can find a good doctor), but be very careful about escalating your dose and watch out for side effects."

• Ida...
• Taken for 2 to 5 years
• February 3, 2018

For Narcolepsy "After getting diagnosed with narcolepsy, my local neurologist tried several medications that my body did not like! In fact, in a liver function test, my AST levels were 196 (normal range is 0-40), ALT was within range. Basically, my liver was inflamed. So, I traveled to a new doctor who got me off all the pills and started me on Xyrem. It took some time getting used to it. I was nervous for 6 months. Strange things occurred if I woke up too soon. The trick is starting a low dose and every 3 months, make an adjustment until you are sleeping 3-4 hours solid. It's ridiculously expensive, and insurance companies will deny it every year, which is a pain, but it's the only medication that my body will tolerate. It's a lot of work! If you are on Medicare like I am, just this year, it's really expensive. So, applying with NORD to help cover it, I hope. The pharmacy is very helpful, but it takes time and energy to jump through all the hoops. I'll gladly jump since it's my only option."

• Bsm...
• Taken for less than 1 month
• October 1, 2021

Sodium oxybate for Narcolepsy "I was so hopeful that this med was going to fix me. The taste I read was awful, but it wasn't too bad. Tasted like ocean water. I take psych drugs that are sedating and muscle relaxers and opioids, which had to be spread out 6 hours before taking Xyrem. That means ALL my sedating drugs have to be taken by 3 pm, which kind of sucks. Took the first 2.25 dose at 9 pm. Took a half hour to kick in. Fell asleep. Up by 11. Dang. I read you can take the second dose 2.5-4 hours after the first. So at 11:30, took the 2nd dose. Half hour wait again. 1 am rolls around, I'm WIDE AWAKE. I understand it takes some people time to titrate up, and with the low doses, it can be frustrating. But then around 3 am, I had 2 panic attacks, full body flushing, heart racing, severe impending doom feeling. The anxiety lingered throughout the next day. I tried it again on night 2, and the SAME things happened like clockwork. My doctor advised me to come off and said I must not tolerate the drug due to the anxiety. *Crying* back to square one."

• MLE...
• Taken for less than 1 month
• March 27, 2022

For Narcolepsy "After taking Xyrem, I was amazed to feel what regular people feel when they sleep and how they wake up! It was amazing! My brain fog and anxiety completely resolved, and I had no need for daytime stimulants. Physically, my brain no longer felt heavy and congested. I don’t know how else to explain it, but just amazing to feel what normal feels like."

• Tir...
• Taken for less than 1 month
• October 31, 2015

For Cataplexy "I have been diagnosed with narcolepsy with cataplexy one month ago. I realized something was wrong with my sleep habits several years ago, but attributed it to stress. I thought I slept well at night only to find out that I never go into restful sleep. The constant chain of dreams is frustrating and can be disturbing. I do take modafinil with mediocre results. I was prescribed Xyrem, and at first I was excited, then became extremely terrified of this type of medication. I thank everyone for sharing the positive results as many mostly will mention the negative. It has been very helpful in calming my nerves for my first dose tonight!"

• Anonymous
• October 12, 2021

Sodium oxybate for Narcolepsy "I admit, I was greedy to feel better and not well-informed about the process of titration when I began this med; I followed the titration schedule but kept increasing the dosage even when my EDS improved and I noticed my anxiety was heightened. After my first night at 4.0x2, I had a full-on anxiety attack. Reduced the dosage to 2.25x2, another anxiety attack. I had to go off Xyrem for a painful month while getting on 10 mg/day of Buspirone, a non-sedating anxiolytic. Talked a lot with my sleep doctor, psychiatrist, and the pharmacists at ESSDS. Now I only take one dose of 3.0 when I wake up (on my own or to the alarm) in the middle of the night, between 2:30-3:30 am. I'm completely off the Ritalin I relied on to stay alert/awake. So grateful I found a dosage level that doesn't cause debilitating anxiety and wish I'd known to take more care through the titration process, stopping when my EDS was affected, not because the Rx notes on the bottle say to keep increasing."