Looking for sighted (not blind) people with this disorder to see what kind of treatments may work or how you manage your life with this constantly rotating sleep disorder. This is also called free-running circadian rhythm sleep disorder and has been proceeded by Delayed Sleep Phase Disorder (DSPD). This is supposedly very rare in sighted people (100 cases; not sure if this is USA or worldwide). I have seen Vanda's info but none of our doctors has prescribed hetlioz(Tasimelteon).
I am familiar with this disorder but I don't have it. I do however, have a similar problem called Chronic Idopathic Insomnia. I've been an insomniac as long as I can remember. I can remember back as a tiny child, lying in my bed, wide awake as the rest of my family slept. Watching the streetlights, and the tree limbs blow in the wind. It's extremely frustrating to try and find any ongoing treatment for this. Ambien worked for me, but only at double the recommended dosage, which no doctor will prescribe. Usually I just stay awake until my body gives up and dozes off for a short time. Good luck to you in finding help.
Hi there. I've been suffering from non-24 for almost 8 years now. Yes, I also thought I had DSPS, but in 2012 I came across N24 and it matched my symptoms perfectly. And yes, I am sighted. A member from the circadian sleep disorders network suggested me to try melatonin. I started with 5mg and my 4 week cycle shifted to a 1 year–meaning I was able to keep a good regular schedule for a year. But after that I had to stop taking it as I wait for the 2 week 'night owl' cycle to pass. I've not tried Tasimelteon as I don't know if it will work for sighted patients. Melatonin works like an anchor. It doesn't fix the problem, but it reduces it significantly. I'm from Brunei by the way. I really need to visit a real N24 doctor, there doesn't seem to be one here.
Hi I am Jill and just diagnosed with sighted non24 last week. My specialist is said to be a expert in this area and the following is my treatment plan:first thing I have to be woken every morning at 7am and take 1 x modafinil and then 15-20 mins blue light therapy (this is to wake me up), from 6pm I am to wear blue blocker glasses (help promote melatonin ), at 9pm I have to take 1 x circadin tablet and make sure it is bed by 11am. So far i have no problem sleeping but still sleeping a lot during the day - specialist says it takes time and getting there will be "crap'. Will let you know how i go.
Jill- Melbourne, Australia
I'm not blind and have had major difficulty sleeping at night and being sleepy during the day as far back as high school - I'm now 63. I've seen three sleep specialists and have been through at least three sleep studies. After one study the wires and sensors were removed then the doctor came in and said that I didn't sleep at all. When I said that's what I told him before being tested he replied that while many patients say that, they usually do get some sleep. He asked if I was willing to have the wires and sensors reattached and try sleeping now that it was daytime. I agreed and after being reattached, promptly fell asleep.
I've tried going to sleep and waking up one hour earlier for 24 cycles, and also one hour later for 24 cycles. I've followed all the recommended dos and don'ts to make falling and staying asleep more likely. I've tried Melatonin and many prescription sleep meds. Some helped but left me very groggy during the day. Ambien worked well but had me doing strange and dangerous things (putting AV Remotes in the freezer, driving my car) with no recall the next day. I've used Adderall, Provigil, and Nuvigil, which help increase my daytime energy and productivity , but often make me feel jittery and less able to sleep at night.
Up until a few months ago my many attempts to find any information about this problem were fruitless. Then very recently I saw something on TV about NON-24, A Circadian Rhythm Disorder. It showed a phone number (844-824-2424), a website (your24info.com), and the name - Vanda Pharmaceuticals. Recently I saw an add for a new Sleep Med. named Belsomra. On drugs.com it's listed as a sleep medicine that helps regulate your sleep and wake cycle and is used to treat insomnia. Then I saw information about a drug named Hetlioz which is used to treat non-24-hour sleep-wake disorder. I will soon be making an appointment with my Sleep Specialist to ask about these new meds. I'll also be joining the six members on the NON-24 Support Group on Drugs.com. Hope this helps someone.
Hello - I am a Sighted, 44-year-old, U.S. residing Female. I hope some of the following information helps you, or at least lets you know that you're not alone. It is important to be proactive in seeking treatment that works for you and keep track of everything! My HISTORY: I have had issues with sleep since birth. In college, while earning a B.A. in Psychology (Haha!), I did a few sleep studies (MSLTs) and started filling out "sleep charts" (great thing to do if you have a good one, but can also be depressing). I was diagnosed with Non-24 Circadian Rhythm Disorder with Excessive Daytime Sleepiness at the age of 20. Graduating from college was a challenge... getting up for classes and taking exams was a nightmare. I had no problem staying up late!!! I have seen many sleep experts, sleep expert-experts, therapists, psychologists, and psychiatrists. It has been a really hard road, as not all doctors believe in such an extreme sleep disorder.
My sleep, while non-medicated, will go around the clock in 1-month. At a certain point, I "push" it forward to "normal time" (I stay up 1-2 hours later every night until it gets to where I want it, then the struggle to keep it there begins.). I still need someone to wake me up for important events, as my alarm clock doesn't do it (believe me... I've tried them all!). Of course I started with a healthy bedtime routine (no problem with staring at cell phones back then!), watched my caffeine & sugar intake, exercised more, exposed myself to real sunlight or a high-powered lightbox in the morning, etc. Throughout the years, I've tried most OTC & RX sleep medications, Benadryl, Melatonin, GHB (date-rape drug), and Seroquel (dangerous at high doses) - none of which worked very well and I was still tired/sleepy during the day! I tried Provigil to stay awake, but I had to be awake to take it (and rich!)! Also, I had to be careful not to let my sleep and wake medications battle each other depending what my sleep pattern was like at the time. Confusing... I know! Current TREATMENT: I take 300 mg of Trazadone & 1-2 mg of Xanax 20 mins. before bedtime (hoping this knocks me out!) AND 250 mg of Nuvigil when I wake up to try to stay awake! Although I'm not crazy, this whole sleep thing makes me depressed and anxious at times. It's a vicious trio, especially as you get older (and wiser!). At least now I have good RX Insurance!!! The body heals while we sleep... except with the lack of R.E.M. Then, the quality goes down and the quantity goes up. Luckily, my current psychiatrist is fighting to get me on Tasimelteon as I type. My sleep doctors are not good at doing their jobs, so I found someone that is! Well, it's 3 am - Time to go to bed...
To momofsightednon24... I just read your question and hope you have found some answers. I too have a sighted adult son with a free running circadian clock. His sleep wake cycle is constantly shifting and so far he believes that many of the symptoms, from several sleep disorders defined, actually apply to him... his sleep problem doesn't apply to just one classification described. He cannot maintain employment because he doesn't have a sleep cycle that maintains a constant schedule. He has kept journals/logs and has discovered that his cycle becomes normal for aboundligout 1 week around the time of the 2 solstice and believes that the seasonal changes of sunlight directly affect his circadian clock. He has tried everything from light therapy (years ago), melatonin, prescription drugs and holistic supplements. Nothing seems to work. I don't know if what he has tried is just old hat therapy or if he still needs to find the right combination of therapies.
He refuses to see a sleep specialist because he feels he has already tried what they will prescribe and I truly believe he has a fear of being disappointed and wasting his time. I am contacting you to see if your son has found a successful treatment that you could share with those still suffering... perhaps it will give him a light at the end of his tunnel.
His depression is getting worst and as he does more research, trying to get answers, he finds there are many more phobias and problems that relate to him. When sleep disorders become so severe, one looses the ability to work, friendships and social contacts are gone and hope for a future is lost. I would greatly appreciate any suggestions or information because he cannot continue on this path of isolation and sadness.
I’ve not been diagnosed but I do believe I have it. What’s helped me is the treatment of my mental illness. I have schizoaffective disorder and as soon as it was treated (at age 18), my non-24 (that I’ve had since birth) has gotten a lot better. It’s not cured, but it’s better.
I think it’s a combination of my drowsy antipsychotic that I take at night, and my illness being treated.
Please let me know if you read this!
I’m not sure if my wife has this disorder but her sleep schedule is unreal. She will stay awake between 24- 50+ hours at a time, then sleep between 18-40 hours at a time. The duration of sleep wake varies each time she wakes or sleeps, no pattern that I can detect. It has put a serious strain on our relationship and our children. Any help with a diagnosis is appreciated.
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