Anyone else have sleep phase delay syndrome?

[Anon2024]

I’ve had insomnia my whole life and I’ve considered myself a night owl. But it’s much worse than that. It’s like five in the morning and I’m still wide awake and maybe I’ll fall sleep somewhere between 6 and 9 AM and sleep most of my day away and then we can when most people are starting to come down from their day like around 4 o’clock pm, I will first go out for a walk or eat my breakfast when other people are winding down. I get a second wind late at night and I was addicted to sleeping pills for about three decades. One of cold turkey last September when diagnosed with CLL leukemia. Since going off my sleep is worse than ever and I can’t continue to live this way. Desperately seeking a professional expert! If anyone knows one please share. I am based in the United States. Thank you

[PleasantPink2]

Have you ever had a Sleep Study done ? Sounds like you could benefit from a complete eval of your sleep disorder. If you are not familiar these are done over night under observation of multiple assessments at once. Starting electrodes to map brain activity, heart & breathing pattern, muscle activity, oxygen saturation. Really very involved because there are a number of factors that are at play for restorative sleep. My cardio referred me to pulmonology and they ordered the sleep studies. You have my sympathy with your sleep disorder !

[Anon2024 in reply to PleasantPink2]

Thanks. Had 10 years ago but for someone with insomnia it’s nearly impossible study because they want you to come in at like seven or eight at night at the latest and expect you to sleep and finish the study at seven in the morning. It doesn’t work very well when you don’t fall asleep until six or seven in the morning!!!!

[PleasantPink2 in reply to Anon2024]

Oh I totally understand !!! I have a very similar issue. They had to order a sleep aide and repeat it twice just to get the minimum required four hours of recorded sleep. They had me there at eight PM but didn't start til ten. I just barely met the requirement and it wasn't even a consecutive four hours. Then just as I am sleeping deeply by five am because of the sleep aide they wake me to end the study since they leave at six am.

Anyway, the point being that you can ask your Pulmonologist or whomever orders you test to order a sleep aide with enough to repeat a dose if needed. They only use hypnotics not barbiturates so the sedation does not interfere with the testing. Only draw back is they will require someone to drive you home.

I didn't have great luck with the first med called zaleplon ( Sonata ) but the second helped a bit more zolpidem ( Ambien ) still need a second dose on both. I really think it would be worth your giving it a shot. Good Luck !

[Bastian7 in reply to PleasantPink2]

As someone who's struggled with insomnia for a few decades now, I never quite understood the point of a sleep study - they can probably show you data of how broken/unsatisfactory your sleep is, what hours you managed to get some sleep (if at all), but what's the actual benefit of seeing this data? I already know how poorly my sleep can be, and can feel it quite vividly every morning when I leave my bed and have to start functioning for the rest of the day.

The only thing I found useful for myself (after becoming desensitised to melatonine supplements) is to come up with my own relaxation/visualisation/self-talk techniques that do make a difference, but need a lot of practice and patience.

[PleasantPink2 in reply to Bastian7]

I understand what your saying. It seems blatantly obvious to us that we can give them enough data based on our experience alone. The value behind a professional sleep study goes beyond just our waking & sleep cycles. They monitor several parameters from brain waves , heart rate/rhythm ( to rule out arrythmias that can trigger apnea ) , breathing quality rate/pattern & how well you ventilate & oxygenate ( to rule out sleep apneas ) right down to muscle patterns. It's really very involved but does give them far more info as to the possible causes for the sleep disorder, not that you just have poor quality sleep, but helps answer the "why".

All that said, it did turn out they found I have sleep apnea , ruled out it being caused by the known arrythmias I have & started me on CPAP. Unfortunately so far that has not improved my sleep disorder to any major degree. They do a lot of teaching on lifestyle changes and abstaining from alcohol & caffeine.

If you decide to go for the study I hope you have some good benefits in the end. And do ask for a sleep aide to get thru the testing because for folks like us that's like asking us to fly to the moon without a rocket....impossible to sleep with all that gear in that setting.

P.S. I should have said the sleep apnea is not causing the arrythmias. But starting APAP ( automatic support rather than constant ) has the apnea index in an acceptable range. The actual sleep disorder of frequent waking & difficulty falling asleep continue. That may not be the results for everyone. Seems some folks have great benefits in resolving their sleep issues with the use of CPAP.

[kaliska0 in reply to Bastian7]

People are utterly horrid at judging how well they slept. Seriously bad. Often you feel better in the morning when you've actually slept worse because you aren't waking from as deep of sleep. When you wake from deep sleep you feel sluggish and take longer to wake. It can persist for hours.

However, finding it easy to wake up and be alert may result in being tired much sooner, having poor concentration, or forgetfulness. Having more difficulty waking up and feeling worse in the morning may end up with a more productive day and not being as tired later in the day, no afternoon crash, completing tasks faster and more accurately, and then having more trouble sleeping because you are better rested.

Sometimes meds can make people feel better and less concerned about things that would normally bother them. Such as things they don't get done in a day. That relaxed feeling that helps you sleep can linger and cause you not to realize just how unmotivated and/or uncaring you are being toward things in your life that you normally would want to expend energy on. It's quite common for people taking psychiatric medications to feel so much better and think they are functioning better only to end up fired from their job or not realize their friends and family find them more difficult to hold conversations with because their cognitive abilities are worse even if their emotions and resulting perception is better.

It's a serious issue even with research studies when trying to measure the impact of medications and other methods like daylight for wakefulness and evening infrared light usage to induce sleep. Self reported symptoms and questionaires are sometimes near useless for determining if someone got enough rem sleep or if they just spent 12hrs in light sleep, found it easy to wake up, and didn't correlate the reduction in motivation later in the day to their quality rather than quantity of sleep. To their knowledge they slept for 12 hrs so they should be well rested, right? Nope.

Sometimes 6hrs is better than 12hrs when you improve quality of sleep but simply going by how you feel over a few days is not an accurate assessment. I found it much, much easier to function when I ditched the meds that were getting me a consistent 12hrs of sleep and felt so much better in the afternoon-evening despite only sleeping 2-4hrs some nights and often no more than 6hrs. It turned out I was getting 5mins or less of REM sleep on meds, which commonly reduce rem, and can get 2-3 hrs of REM even in a 6hr night without them. I also found that even when I went to bed earlier I did not have deep or REM sleep sooner. I merely gained hours of stage1-2 sleep.

Stage 1 sleep is where you aren't even certain you slept and if it weren't for the passage of time people may even claim they never fell asleep. Stage 2 you generally recognized you were completely unaware and asleep but while you need some time in stage 2 light sleep it is not the most restful. I finally got an oura ring because I was seriously tired of guessing how well or much I was truly sleeping and I had to keep starting and stopping meds, supplements, or behavior routines repeatedly to try to measure the differences.

Many have no idea they are stuck in light sleep all night, having micro awakenings in the middle of REM sleep, skipping stages of sleep instead of going from stage 1 light sleep to stage 2 light sleep to deep sleep (sometimes divided into stage 3 and 4) to rem and then back to stage 2 followed by deep sleep and back to rem in a cycle. You can go straight from stage 2 to rem, never experience rem, or have fractured patterns of a couple minutes of rem, couple minutes of deep sleep, and then a couple minutes of rem again instead of a graph of sleep stages looking like a steadily rising and falling set of stair steps. Microawakenings are when brain waves spike from what indicates rem to what would normally be full wakefulness but not long enough you are aware you woke up. It is enough to interfere with the processes that need to take place during rem sleep.

One warning sign of poor rem stage sleep and interruptions to it are remembering your dreams a lot. Dreams do not go into memory while you are sleeping. You can only remember them if you are close enough to waking so typically you will only occasionally remember dreams shortly before waking for the day and often if woken up by something while in rem sleep. If you remember many dreams throughout the night or at least one every single morning it's likely your sleep architecture (that stair step pattern your sleep stages should have) is not ideal and having an impact on your physical health or mental abilities even if you feel like you slept normal.

Many people suffer sleep issues their entire life or for so long during their adult life they don't know what good quality sleep feels like. Even if they can accurately feel when sleep worsens or improves they don't know what truly good sleep is versus enough to survive and function the same as they have been. It's a case of not knowing what you are missing. You live with it so long you don't know that you are failing to get good sleep and that you could feel better and find activities easier to accomplish than you do now.

I actually had no idea I was sleeping so poorly at first. I always was the last to fall asleep and then around 12 years old I just kept feeling tired all day and I remembered lots of dreams. I tried just going to bed earlier. I was unaware of more time passing and quit setting an alarm in the morning because I always woke up before my alarm to get ready for school. I was still tired and aware of lots of dreams. I knew my thoughts but I wasn't controlling them, didn't know anything going on around me, and didn't feel time passing.

That some people try to purposefully induce that type of lucid dreaming is kind of annoying after it drove me nuts for so long. It was 6 years of that before it impacted my school work and social skills enough to end up at a psychiatrist. Then as a side effect of the random toss anxiety and antidepressant meds at an unknown problem I realized I hadn't been sleeping normally. I realized I was spending a lot of time in this state of being aware of what my brain was doing but not of the world around me. Half asleep,half awake.

If you want a slightly better method than how you feel you can use free online cognitive tests meant to help assess and improve various categories of thinking or perception such as memory and spatial awareness. Doing it at the same time every day will give you a slightly better assessment on how good or bad your brain is doing and how well some new method of treatment is working or not. Ideally a home eeg device (one in Europe is covered by insurance now) or something like the oura ring that infers sleep times and stages based on changes in vital signs and movement will give you an even more accurate picture of what your sleep is actually like.

[Fortiesgirl]

Yes I have the same problem as you, and it’s been 26 years now. It started when my partner walked out on me leaving me living in a home that I didn’t own as my partner had the mortgage but which I had sunk all my savings into. And I was unemployed. Our dog died a few weeks later - IMO of a broken heart - and my mother died six months to the day after my partner had left.

Yes I’ve been to a sleep clinic who gave me a lamp and prescribed melatonin. Melatonin did not do anything for me and if one doesn’t get to sleep until 4 or 5 am it’s almost impossible to drag oneself out of sleep at 8am. Besides which one has to be awake enough to turn the lamp on. Gave up on that many years ago and life is a continuous struggle.

Like you my day starts at around 11 - midday with breakfast at about 2pm and evening meal often at ten at night. And of course in winter very limited daylight hours.

I do actually sleep and for a long time - often twelve hours - once I get to sleep, but it’s a horrible way to live and socially isolating. Many older people have a social life around meeting up for coffee, but if you don’t have mornings to be sociable and teatime is one’s breakfast time, one is lost for companionship.

I finally agreed to have sleeping tablets , zopiclone, three or so years ago but limit myself to one every ten days or so. GP also agreed to amatrypteline nightly which did work for about eighteen months.

I am close to my 82 birthday now and moved to another region just over a year ago. My new GP are being parsimonious about giving me zopiclone, muttering about being questioned by the coroner ! Which I find insulting.

I’ve recently heard about Phenergan but have only just started this in the last day or so.

I find very little compassion within the medical profession about this disorder. It’s a case of just putting up with it.

[kaliska0]

Unfortunately the causes of delayed sleep phase syndrome vary wildly and all attempts by researchers to categorize people with insomnia disorders into groups that were likely to respond to similar treatment has failed so far. One thing many miss is that daytime is just as important as nighttime for maintaining a sleep schedule and sleeping well. What you do from the moment you wake up impacts when and how well you will sleep. For some what they do in the morning and throughout the day has a greater impact than any evening activity or sleep aid. You need to promote changes to hormones and neurotransmitters that mean it's daytime and increase motivation to be active in order to then generate the signals to sleep later.

Another thing to consider is that sleeping 8hrs straight all night is not "normal". It's an artificial schedule we invented for modern jobs.

sciencealert.com/humans-use...

dreams.co.uk/sleep-matters-...

ncbi.nlm.nih.gov/pmc/articl...

livescience.com/12891-natur...

theatlantic.com/ideas/archi...

The first approach usually tried to alter sleep timing is external triggers.

Light is the biggest trigger. Using daylight therapy or just bright, full spectrum lighting and some need it on the entire time they should be awake. No dim or mostly yellow room lights during wake time. You need the blue spectrum that was completely lacking from incandescent lights and often still isn't included in fluorescent or led due to seeming harsh or people just not being used to true daylight white indoors.

Infrared or near infrared (NIR) in the evening has shown promise in helping trigger sleep at the correct time. It has to be a true NIR bulb and not one of those red painted incandescent heat bulbs. Past studies did find people were more alert throughout the day when exposed to white fluorescent instead of incandescent that puts out some infrared and a lot of yellow light. Some do find merely using dim red lights all evening helps but actual infrared was more effective in what studies have been done. The 600nm range is used for treatment of pain or inflammation and easy to find but sometimes too visually bright. As you get to 800nm range you can't really see it but your brain still perceives it and seems to work best for tricking the brain into believing it's time to sleep.

Use auto dimming and/or blue light filters that many electronic devices come with or you can buy blue blocker glasses to block the alerting light spectrum in the evening. Smart led room lights can switch from white to yellow or dim with a phone app or remote.

Temperature also plays a role in wakefulness. People sleep best in 65F(18C). Reducing temp in the evening compared to daytime temp can make you feel like being less active and lead to sleepiness. A hot shower or bath can actually help by dilating blood vessels and causing your body to cool rapidly and perceive the air as colder immediately afterward. A less obvious problem of global temp changes is places that never needed air conditioning risk remaining too warm in the evening for ideal sleep. If the temp doesn't drop enough you lose one of the major triggers to sleep.

A morning and a bedtime routine also are important. It's often the first thing told to people having trouble sleeping so you've likely already heard to always wake up and try to sleep at the same time every day regardless of requirements to wake or not, do the same relaxing activities before bed, and follow the same morning activities to wake up.

Food is important for wake up signals in the morning and can impact triggers throughout the day and night. Eating breakfast alters hormone levels to signal you to wake up. Some do need food closer to bed than others because if you get hungry or thirsty the body also releases signals to wake up so you can fulfill those needs. While it's typically not recommended to eat close to bedtime for some it helps make them sleepy. With all needs fulfilled they feel less pressure to stay awake and keep going. If your body is deprived of some need it will tend to release substances like orexin, cortisol, and dopamine to keep you alert longer so you can solve whatever source of discomfort, thirst, hunger, or anxiety you have.

For reasons unknown some studies did find that improving respiration even in people who don't notice any symptoms of asthma or measure low blood oxygen can lead to easier and better sleep. Children with ADHD given inhaler or nebulizer treatments for asthma when they did not have respiratory symptoms still experienced improved sleep and reduced symptoms the next day. Some with pain and inflammatory conditions also may improve with respiratory treatments or other methods of increasing oxygen in the body such as sources of nitric oxide (beet root powder, l-arginine....).

Internal triggers get far more complex because the variables are greater. You can spend decades testing those. Done it.

In people with ADHD more dopamine and even caffeine can trigger sleepiness and relaxation when normally it triggers wakefulness. Delayed sleep phase syndrome is common with ADHD and many who don't meet diagnostic criteria for ADHD or it is not well recognized in their country still find their sleep improves when they go against some typical suggestions. Low levels of certain neurotransmitters often have the same negative effects as high levels. Some people can end up having difficulty relaxing and sleeping due to excessively low levels of what are considered "stimulating" neurotransmitters and benefit from supplementing them for sleep instead of for alertness.

sciencedaily.com/releases/2...

The body uses various methods to try to fix low levels that may result in making you more alert when you should be falling asleep. A burst of the low hormones and neurotransmitters is released to try to normalize levels making it temporarily harder to sleep and potentially suddenly feeling a greater need to do something. Eventually the body switches back to preparing for sleep but it may be hours later than you wanted.

The new orexin antagonists can help with late evening increases in energy without the negatives of most sleep meds. Orexin is one of the major signals used to tell the body to release alerting substances from histamines to cortisol to dopamine and serotonin. Lack of orexin is one of the main causes of narcolepsy. These meds are often not directly noticeable and you may not realize there is a difference in sleep until taking them for weeks so many give up.

pubmed.ncbi.nlm.nih.gov/325...

uptodate.com/contents/delay...

When the standard suggestions don't work you need to think outside the box and sometimes even do the opposite.

[Hidden in reply to kaliska0]

When it's a sunny morning I make a habit of looking out the window or going for a walk letting the sunlight on my face. On cloudy days I use a sunlight lamp and this works for me. I am able now to sleep 7 to 8 hours a night and wake up at the same time each morning. Also, I usually go to be at the same time each night. These little sunlight lamps are reasonably priced and are available in pharmacy medical gadgets department or online. They are worth a try rather than taking meds.