Do you have Non-24? — 27 Comments

  1. Being bombarded with commercials for non-24. Wondering what gives? Can’t be enough blind folks needing this medication to make such blanketing of the media profitable

    • Hi Gloria, Vanda’s marketing strategy is called “patient-directed physicians” or PDP. It’s aim is to use the commercials to “educate” patients, who in turn inform the physician about not only the drug, but the disease. Apparently, Vanda doesn’t think enough doctors know about Non-24. And at $60,000 per patient, every prescription helps! Thanks for the comment, FN

  2. hello, i am a physician taking care of a blind patient. today, prior to this patients appointment a vanda rep was trying to see me about non-24. the patient inquired w/vanda months ago and they have repeatedly tried to contact him and me. i dont have any problem with reps at all in general and learn much about new drugs through them. my issue is that this patient was completely unaware that the rep wascomming to meet him/me, at this time. no permission was granted by him. completely inapproriate!! the patient was not intrestest in using the medication as his sleep cycle is fine.

    • That’s pretty aggressive on the rep’s part. For some reason Vanda priced Hetlioz at over $7,000 for 30 days–perhaps they’d get more interest if they lowered the price. I wouldn’t be surprised if it’s dropped from a lot of formularies. Anyway, thanks for the comment! I’m always interested in the physician’s perspective. Cheers, FN

  3. Hi.My son has Non24.He is 20 years old now, but he has struggled with sleep since he was very young.I think the worst part of living with this disease is that not everyone can be sympathetic to your situation. It’s true that many people think you’re just being “lazy” and you could go to sleep if you wanted to. I wish that were the case. My son suffers from depression because he feels his life is worthless. He can’t find a job because he can’t wake up on a routine schedule. we haved tried sleeping pills, but htey just make things worse.I don’t know where to turn for help. Can anyone help me? Please?

    • i have had the same trouble that is a pill called Hetlioz and i have done a lot of research on it but haven’t tried had the opportunity to try it because it is for adults only and i am still a teenager. i hope i helped even a little

  4. Hello.
    Finding this blog was a very nice surprise, and I have a few things that may help. I’ve used melatonin since about 1996 and can say for sure that some brands work very well. Some brands are a scam, and that comes due to FDA having no link to it. Maybe we can share brand names.

    Another matter is lighting, for which I have been consultant on LEDs since they came along. White LEDs have a blue spike that suppresses melatonin, cool-white the worst, that’s lab confirmed. These LEDs merely copied the phosphor technique of fluorescent lights which have been reported by the AMA since the mid 1970’s for these issues. Yes, melatonin suppression is linked to many cancers, especially breast, and type-II diabetes and obesity. LED makers could have spent the time and money to correct this, but guess what?

    So in the mid ’90s utility companies offered rebates on CFLs which have the same disastrous blue spike as their parent fluorescent. Now recently we are alerted of incandescent lighting outlawed, beginning with the 60 watt. That incandescent has ZERO melatonin suppression, and should be on your night table to read by, next to that bed you hope to use. Next we need to get the protective amber-tinted eye glasses to help safely support the CFL suppliers. Just FYI – if your electricity is 15-cents/kilowatt hour, that 60-watt costs 1 penny per hour, and you can leave it on all night with no melatonin loss.

    There have been lab tests for that nasty blue spike, testing hormones in blood and pupil iris conditions. Absolute fact, and it was mentioned previously here about several decades having sleep disorders. My web page has link to the most recent test by LRC in October 2013.

    Let’s share all we can to avoid losing our melatonin.

    • Hi Patrick, thanks for the comment. Yes, artificial light and gadgets have really disrupted our natural sleep rhythms and now we are all urged to use various pharmaceuticals to cope! I agree with you that a better place to start is manipulating sources of light. I never use more than a 40-watt bulb by my bed and try to avoid computers and TV after dinner (not easy).

      I personally have never used melatonin, but as you said it is a supplement and therefore not regulated by the FDA. What brands do you recommend?

      Thanks for stopping by! FN

      • Hello. The most recent brand I use is Nature’s Bounty, not the delay version, 5mg. That I have used for a couple years. Before then it was Nature Made. Both these are good. One must determine their own dosage requirements, that can vary by person and the lighting stuff 4 hours before bedtime.

        • That phrase I used: “delay version” actually meant timed release. I accidentally used that timed release version and found it of no use. Most in need will probably use the 3mg or the 5mg and get that blast at bedtime. Once asleep the Pineal will make some more and you will get through that segment of circadian cycle, hopefully right amount to wake up when the alarm says to.

  5. When I started hearing the commercials on the radio I knew exactly what they were referring to and I am not in the health care profession. My son was in a car accident in 2008 and he totally and permanently lost his vision. He was asked to be in a clinical trial by Vanda a year after his accident, because he was still in denial regarding his loss of sight he did not participate. He now wishes he had so he could tell just how effective Hetlioz would be. He has been dealing with non 24 for several years now. He will sleep up to 36 hours straight then be up another 36 hours. He tries to go to bed at a normal hour like sighted people but cannot fall asleep. He has been prescribed many different sleeping medications, and combination of medications to help him sleep to no avail. He wants to go back to college but I fear with his non 24 it will be very difficult for him. I knew that Hetlioz was going to be very expensive as all new drugs that come into the market are when they are first FDA approved. Unfortunately he probably will not be able to get Hetlioz because he is on Medicare and I doubt it will be covered. I am hoping at some point it will be. My point is any drug that can help even a few can be good. As my son puts it he is in a minority in a minority, only 1% of the visionally impaired are ‘total’. I appreciate Vanda doing research for the 1%. ‘Non 24’ or ‘circadian rhythm disorder’ what’s in the name, people that do not know what either is would have to look both up. I totally agree with Julie’s comment, unless you have lived with the pain and suffering of a loved that wants to live a normal life let’s not criticize research.

    • I’ve had this for 15+ years, and I posted in another thread here on another post. The whole process of getting Hetlioz was actually not that bad, and surprisingly, my insurance (who will not pay for a single brand drug without a $150 co pay) is paying for this. Vanda pays the co-pay. So, it’s free in the end for me. Medicaid might pay…you should call the hotline at hetlioz (the # is on the website) and ask, because the people who answer the phone do know quite a bit. Then, you just need his doctor to document the diagnosis & write the RX & send it to vanda – and they take care of the rest. The drug gets shipped to your house. It’s not in a normal pharmacy. It was about a month of waiting from the day I signed it until they day I take my first pill – which isn’t that bad considering how many people were involved (doctor, PA, pharmaceutical company, insurance company, and specialty pharmacy).

  6. I am the mother/caretaker of a 17 year old sighted, Non24 sufferer (but otherwise very healthy and intelligent young man) who was diagnosed 3 years ago at Mayo Clinic. This disorder is real and it has robbed him and our family of a normal life for 10 years of his young life. Unless you have lived with any disorder or disease that there is no treatment for, you have no room to criticize the research or marketing being done. If the pharmaceutical companies were not making you aware of rare disorders and diseases you would never even know the extent to which these people suffer. If this medication can help a handful of people, then in my opinion it is a success. Shame on doctors and other health professionals for diagnosing for the sake of diagnosing and prescribing for the sake of prescribing.

    • Hi Julie. I have a 2o year old son…who sounds alot like yours , sweet, intelligent, sensitive. He has had non24 for past 3 years. Had to leave college & come home. You are right unless you have lived with it, it is hard to understand. Am hoping for some treatment to work..nothing impacts it so far…it is comforting to know there is another Mom in this world struggling to help her son with this. I feel your pain…it breaks my heart to see him so isolated. My son also has Aspergers..not sure if there is a connection with the central nervous system being out of whack? Feel free to email me! Sharon

  7. I have non-24. Originally I was diagnosed with DSPS (Delayed-onset Sleep Phase Disorder) which in not quite as rare as non-24. Diagnosed by 2 separate sleep clinics. Winthrop & Columbia hospitals in NY. I am not blind. But I do have 7 autoimmune disorders and have been tested (negative) by 3 neurologists over the years for the prions present in FFI (Fatal Familial Insomnia). I have virtually no life, no health and am holding onto my job by my fingernails. I agree that these drugs come out and are mass marketed under a catchy new name as well. But, for those who truly suffer with a major circadian rhythm disorder this drug may just be the answer. I have tried so many things, but have had no luck. Since the age of 2 my sleep cycle has been abnormal. I suffer from ataxia because of sleep depravation and my health and thus my life is in in shambles. I am hoping I can get this drug, as a sighted person it is not approved on my health plan, and possibly break my current circadian cycle and regulate it into a healthier one.

    • Hi L, thanks for commenting. I have no doubt there are people, such as yourself, that suffer terribly from sleep disorders. My concern is that the makers of Hetlioz are overstating its benefits, as well as marketing to a much broader base than just those diagnosed with non-24. Although it is not yet available, Hetlioz will be very expensive, and I have doubts that it will prove to be worth the money. Still, I am sure it will provide relief for some patients, and I hope you are one of those who responds well to treatment. FN

  8. I just went to see my sleep doc yesterday. He was one of the researchers involved in the clinical trials. He said I clearly fit the guidelines and he’ll prescribe Hetlioz for me when it becomes available. I’ve had this “rolling biorhythm” problem my whole life, and am now completely disabled with fibromyalgia, chronic fatigue, and other sundry chronic problems. My health has dramatically improved over the last two years with the addition of CPAP and some heavy sleep drugs, but I’m still tired and very much in pain. Hetlioz may be the key to getting into remission, so I’m looking forward to trying it!

    • Thanks for sharing your story. I hope you and your doctor are able to find a treatment that works for you. Best, FN

  9. I’ve dealt with this problem all my life and I’m not blind, so how lucky I am to have this supposedly “extremely rare” condition . My psychiatrist says sleep disorders often occur with bi polars like me and He said I have a greater than 24 hour bio clock. Basically, I always have a problem falling asleep and so I often have many nights where I’ll only have 4 or 5 hours of sleep since I do have to wake up for work. Recently, I took a leave of absence from work and now that I don’t have to wake up for work , I’ve been gradually getting to sleep later and later each night. I went from falling asleep at 1am to 3 weeks later not being able to sleep till 9am. So now I sleep all day and am up all night. This sucks really bad! In my lifetime, Ive tried everything from melontonin tablets to light therapy. Nothing works. I hope to try this drug once I have health insurance again.

    • Steve, thanks for stopping by and sharing your story. I hope you are able to find a treatment that works for you and is affordable, as well. Good luck, FN.

  10. I actually believe this malady is quite common. I have had it since I was a teenager and I have met several people with the same probem. We are all sighted individuals and have extreme difficulty adhering to the usual societal expectations regarding sleep and maintaining a schedule. Luckily we are all contractors and don’t have bosses to please. But if the reported numbers in sighted people were correct, the chance of us even meeting one other sighted person with non24 would be almost nil.

    • Hi John, thanks for stopping by and commenting. Sleep disorders of all kinds have been on the rise over the last few decades, and thanks to the recent proliferation of sleep medicine clinics, more diagnoses are being made than ever before. My concern is when those diagnoses lead to increased use of prescription meds when more conservative, non-drug interventions might be just as or more effective, and certainly less costly. Will Hetlioz be a game changer for Non 24 and worth the expense? Obviously, I have doubts. FN

  11. This post made me laugh out loud! I am a nurse and have heard the commercials on the radio and wondered what Non-24 was. Every time I heard it, I would rack my brain and think surely I had heard of this before. I would never guessed it was “circadian rhythm disorder.” Yes, this dx will surge!

    • Hi Erica, thanks for stopping by and commenting. The tactics of the pharmaceuticals are pretty transparent and funny when you realize what they are doing. Consumers beware! FN