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.
Yes there is sir, My names Chris O'Brien and I'm one of those rare sighted people that has been diagnosed with Non 24. I'm 48 yrs and reside in Toronto and have lived my entire adult life at night.
My circadian rhythm is essentially reversed. I've been desperately hoping to connect with someone else like me . My extensive searching has turned up absolutely nothing.
I know a lot of time has passed since you have posted this, but my 18 year old son (who is sighted) was recently diagnosed (by a Neurologist) with Non-24. We have been through hell and back for the past 5 years. My son has always had sleep issues. His Non-24 has affected his ability to maintain friendships, have a social life, get a job, graduate high school, participate in family activities, and live a normal teenage life. I was told that he will have this the rest of his life and there is no cure. His body has a sleep/wake rhythm disorder that he has no control over. I have tremendous guilt for thinking my son was just being lazy, unmotivated, difficult, defiant, avoiding on purpose... the lectures I gave, all the therapists he had misdiagnosing him, all the different doctors and multitude of tests, lab work, and medications tried, his school coming down very hard on him... my heartaches just thinking about it.
However, we finally have a diagnosis that completely fits what my son has been experiencing and although there is no cure there are things his neurologist is having us try to see if he can have more productive wakeful moments and try to get his body in some sort of rhythm even if it doesn't match the typical sleep/wake rhythm most of us are born with.
His neurologist has prescribed Rozerem to be taken at midnight EVERY night and Light Box Therapy EVERY morning at 9am. It is vital that the medication/light therapy times are consistent and don't vary at all. We have been doing this for a week now and there is improvement. My son is actually waking up/responding to the light box in the morning even if he falls back to sleep for a bit. His awake/alert time has gone from approx 4-6 hours during the day to approx 6-8 hours. The idea/hope is that his body will start to recognize the bright light from light box as a trigger to produce the wake up chemicals in his brain and help him wake up while the Rozerem introduces the sleep chemicals to his brain triggering his brain/body that midnight is time to sleep.
We live in the Seattle, WA area and have been very blessed to have such amazing access to a variety of specialty doctors who are familiar with and have worked with Non-24 sighted patients. It is extremely rare to be sighted and have Non-24, but it does exist and does afflict sighted people.
I hope to hear from and connect with others who are also sighted and have Non-24 or love someone who is affected by Non-24. We shouldn't have to feel alone anymore. We have each other to lean on and share experiences/stories with.
25 Years old and have sighted non-24. I am over sensitive to light so Receptors can not tell my body to wake up. I too have been through hell and was misdiagnosed, from Anti-depressants to mood stabilizers to ADHD, which actually was just symptoms of me not getting enough sleep and being sleep deprived. I am not myself when sleepy and can be really irritated and blow up over small things and trust me it’s hell, especially when it affects social and relationships.
To me as an individual since it is rare and different for everyone is my main problem isn’t with Non-24, It is with sleep deprivation and the side effects of not getting any sleep. Has wrecked any job I have had in the past, Mostly from sleeping in. (Alarms or nobody can wake me).
Also people can be really mean,It is so rare for sighted people that I get called lazy all the time, (Even by friends) get used a lot by people because they think I don’t care and am just a lazy person because they cannot understand Sighted Non-24. I have always had sleep issues, trouble making friends, and family issues, but really started suffering around the age of 20, So for me the last 5 years have also been horrendously difficult.
Melatonin has helped for awhile, but does not cure it. As I am over sensitive to lights, light therapy does more harm than good. Trying to get into a pattern never helped me and I tend to be off the handle, tired all the time, and extremely irritable. For me the best thing that worked is just being a night owl and accepting yourself for who you are.
Trust me I know just how hard it can be for your son and even if others don’t accept you or understand, but just sleeping when I was tired and waking up when I wake up did wonders. For me like stated, my main problem was sleep deprivation, and since I sleep when tired and wake up when body wakes, I rarely feel tired. Section 504 Plan is definitely something that helps me with College. School has to work around my sleep schedule and since my sleep gets shifted all the time the College has to provide accommodations under Section 504, which helps a lot in my studies. Yes their is no cure and he will have to live the rest of his life with non-24, but that does not mean he cannot live a happy normal life and it is possible to be more active socially.
It is different for everyone, But for me, I just live my life mainly at night. (I do take naps at night when feel drowsy and tired, which shifts times). Have yet to meet anyone around my age who has it, but would be very interesting to talk to others who have experience what I go through.
I am a retired male 65+ combat veteran with PTSD and non-24 sighted. I have been in the V.A. treatment system for 3 years. Since retirement from private industry my sleep cycle has gone to hell in a handbasket. If I can get to sleep within three hours of the same time in any three days I feel lucky. I live in a small city in Texas within 10 minutes of a V.A. clinic. Treatment for PTSD is 100 mg of Zoloft daily. Not one doctor from private or public or government will consider even talking about my sleep pattern. So I just let it happen and live around the awake times. Thanks for letting me vent. If I can help with your study just contact me at (940) 867-9341.
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