User Reviews for Hetlioz oral

I'm a sighted person with true non-24. My brain doesn't get the light cues to my brain to entrain my circadian rhythm. It's a neurological defect passed down to me from my family. I was approved for this medication only after a 3rd party review with my last insurance company, because I'm not blind. This medication was a miracle for me. I don't remember how long it took for my circadian rhythm to be entrained, but I was tired and looking forward to going to bed by around 8pm and when I finally got there I was able to go to fall asleep with ease on most nights. I would usually be asleep by between 9 and midnight (my choice ??), and wake up feeling refreshed by around 8-9 am. I was finally able to experience what it was like to be "normal" and not be looked down on for being "irresponsible or lazy". I was able to homeschool my daughter, make it to earlier appointments, and be up and out of bed. Before I was on this medication, I was lucky to be falling asleep by 8-9am. I was on it for over 2 years. Now, I'm fighting insurance to cover it again because I'm not blind. Since they've taken it away from me, my sleeping patterns have reverted to the way they were before. Once again, I find it impossible to get enough sleep, and it's definitely not at night time, making it impossible to homeschool my daughter, get out of the house during the day to make it to Dr appointments, or do anything during business hours. I've spiraled back down into severe depression and anxiety, and stay in bed most of the day because I'm too exhausted and apathetic to get up and do anything. I'm a shell of the person I used to be. Things are back to the way they were before I got Hetlioz. My life, as I and my daughter knew it, is over. I've worked hard to not show her my mental defects, so they wouldn't affect her, but now that's all I have the energy to show her. It's discrimination to say I have to be blind to get it, if it helps me.Read More Read Less

I was on a clinical trial for Hetlioz and ASD sleep issues. Hetlioz gave me extremely weird dreams and sleep paralysis on several nights. When I started Hetlioz, I called Vanda directly to find out why the drug caused UTIs; they were very evasive with their answers, instead attempting to get my information and my study Doctors info. I took it anyway, and I went from having a delayed sleep issue to a pretty bad advanced delayed sleep phase issue. Comically high price take notwithstanding, I would never take this drug again or recommend it. Read More Read Less

I have been on Hetlioz for 6 months. I was told it could take up to 3-4 months to take an affect. Well it still has not worked. As far as I can tell I had no side affects. What shocked me the most was when I got a statement from my Medicare advantage provider. It showed they paid $40,000 for 90 days of the drug. Then my share would have been $4700+ and that was covered by PSI which I had to apply for. Then some other organization paid $2300+. So that means a 90 day supply cost $520+ per pill. I took 1 20 mg pill per day. For a drug that didn't work for me I decided to stop it. I did talk to Hetlioz and the same costs would be charged every 90 days. That means a year would be $188,000. There is no drug that is worth paying that amount. Makes me wonder if the doctor that prescribed it gets a kick back. I thank PSI for approving me for covering the cost I would had to pay until August 2019. Then I would have to pay that amount. I will now be trying something else my primary doctor suggested. I wonder how many others have tried this drug.Read More Read Less

Taking Hetlioz was not a good experience. I was thrilled that my insurance paid for its hefty price tag (after a lot of paperwork), but now they don't have to pay anymore. It caused severe body aches, particularly in the lower back. Even worse, I slept 12 hours - but it was not good sleep (I sleep 8 hours normally). I simply could not get out of bed, even after waking up at 6, 8, and 10 hours. I was beyond exhausted. It did not advance my clock or keep it where it was. My clock still continued to move forward. I felt horrible the next day. It was extremely similar to Ramelteon's side effects, and much more potent than melatonin. I was also dreaming without fully being asleep for the first hour or two that the drug was in my system...and my dreams were crazy & vivid all night. I thought I was crazy, but my doctor said this wasn't my imagination. He said it happens often with narcolepsy patients, and that basically the brain stem and the cortex are not synchronized - and one is asleep while the other is not (so you're dreaming while mildly awake). I was desperate for a good N24 treatment, but this is not it. I am also on benzos, but I am on a dose that has been stable for 3 years (more to avoid withdrawal than promote sleep), so I don't know if that interacted or not (and neither did the company when I asked)... regardless, it did not advance my clock or keep it where it was. Very disappointing. This disorder is horrible.Read More Read Less