Many of us are still tired, and/or need a lot of sleep, even when sleeping on our bodies' preferred schedules. This contradicts the idea expressed in many articles, that our sleep would be perfectly normal if we slept on our own schedule. There's more going on than just the timing of sleep.
Doctors frequently say that depression is the cause of sleep problems. The survey data suggest it is often the other way around.
Light therapy isn't the ultimate solution for most people, despite what many doctors seem to think.
Phase-delay chronotherapy is not a long-term solution for DSPD, and appears to involve unacceptable risk of the DSPD becoming Non-24.
There are a lot more sighted Non-24 people (our respondents so far are all sighted) in this small sample than most doctors would expect. One reason may be that Non-24 interferes so catastrophically with people's lives that they are more motivated to take the time to participate in a survey like this. But we suspect that sighted Non-24 is more prevalent than is commonly believed.
About the Survey
Circadian Sleep Disorders Network, in partnership with Invitae (formerly AltaVoice, formerly PatientCrossroads), is sponsoring a registry and survey at
www.CircadianSleepDisorders.org/registry.
Please take the survey, if you have a circadian rhythm sleep disorder and have not already done so. Your answers are de-identified, we cannot connect your name and email to your survey responses. For more information, see
www.CircadianSleepDisorders.org/registry/registry.php.
The following preliminary results come from responses of the 578 people who have completed the survey as of May 11, 2018. We now have even more respondents. It is preliminary also because we have not eliminated inconsistent entries. Also, we have not yet looked at correlations, for example to determine if some experiences are more common among non-24 respondents than DSPD respondents, or whether patients whose eyes are especially light-sensitive respond differently to various treatments. We need a bigger sample to do correlations, so we hope to get a lot more circadian rhythm sleep disorder people to take the survey.
(Note: The chart below is old, based on only the first 200 respondents)
Of the 578 respondents to date:
435 have DSPD, and 47% of these have been so diagnosed
174 have Non-24, and 29% of these have been so diagnosed Comment: There are a lot more sighted Non-24 people (our respondents so far are all sighted) in this small sample than most doctors would expect. One reason may be that Non-24 interferes so catastrophically with people's lives that they are more motivated to take the time to participate in a survey like this. But we suspect that sighted Non-24 is more prevalent than is commonly believed. Comment: There may be several reasons why fewer non-24 people have been formally diagnosed: Many doctors don't recognize it, and some still insist it only affects blind people (our respondents are all sighted). Some patients started as DSPD, evolved into Non-24, and don't see the point in going back to their doctors, especially given the difficulty of scheduling an appointment in advance if their sleep schedule is unpredictable. Some people self-identifying as Non-24 may not understand the disorder, and may be mis-identifying.
31 have ASPD, and 6% of these have been so diagnosed Comment: We suspect that because these people have no trouble getting to work/school on time, they are less likely to see a doctor about it.
78 have ISWD, and 13% of these have been so diagnosed Comment: We suspect that a lot of these people misunderstand what ISWD is.
Note: Some people have responded with multiple diagnoses.
Diagnosis
Of those formally diagnosed, 22% took 10 years or more to receive an accurate diagnosis, from when they first sought help for their circadian rhythm disorders.
About 1/2 were wrongly diagnosed initially, many with multiple incorrect diagnoses over the years. Chief among these incorrect diagnoses: depression; insomnia; and "nothing is wrong".
Tiredness
When sleeping on their body's preferred schedule: 42% feel alert during the day, 58% still feel tired. 22% feel very tired or worse.
On average respondents sleeping on their preferred schedule would sleep 8.7 hours, and 31% sleep 10 hours or more (actually 9½ hours or more, since we asked people to round to whole hours). Comment: Many of us are still tired, and/or need a lot of sleep, even when sleeping on our bodies' preferred schedules. This contradicts the idea expressed in many articles, that our sleep would be perfectly normal if we slept on our own schedule. There's more going on than just the timing of sleep.
Of those who have to get up (work, school, family), 66% get 6 hours or less sleep on workdays (actually 6½ hours or less, since we asked people to round to whole hours). Average sleep is 5.9 hours.
Of those who have to get up (work, school, family), 60% are late for work or school at least once a week.
Other Sleep Disorders
(Note: The chart below is old, based on only the first 200 respondents)
42% of respondents with a circadian rhythm disorder also have been correctly diagnosed with another sleep disorder, most commonly bruxism, sleep apnea, or restless legs syndrome. Comment: Many patients have multiple symptoms, which can complicate diagnosis.
Other Disorders
(Note: The chart below is old, based on only the first 200 respondents)
49% also suffer from depression. For 60% of those, the depression started after the circadian rhythm disorder. Comment: Doctors frequently say that depression is the cause of sleep problems. This suggests it is often the other way around.
25% also get migraines.
48% of respondents felt they were unusually sensitive to bright light. Comment: Is this related to response to various treatments?
Treatments
(Note: The chart below is old, based on only the first 200 respondents)
Of the 197 people who tried light therapy, 30% are still using it. Only 14% achieved their desired sleep times. Only 22% said it helped somewhat or more. Comment: This includes people using other treatments as well as light. Clearly this isn't the ultimate solution for most people, despite what many doctors seem to think.
Of the 180 people who tried light restriction, 35% said it helped somewhat or more. 63% are still using it.
Of the 377 people who tried melatonin, most used it within an hour of bedtime. Only 34% are still using it. Only 12% achieved their desired sleep times. Comment: Melatonin should be taken much earlier to be most effective in shifting circadian rhythm.
Of the 182 people who tried phase-delay chronotherapy, only 2 said it helped indefinitely. 95% said it helped for a month or less or not at all. Comment: Phase-delay chronotherapy is not a long-term solution for DSPD
Of the people who tried phase-delay chronotherapy, between 13% and 20% said their DSPD became Non-24 after using it. (The lower number results from removing all respondents who claim both DSPD and Non-24. We believe some of these are confused about the definition of Non-24, while others interpreted the question "Which of these circadian rhythm sleep disorders do you believe you have? (Select all that apply.)" to include having had DSPD at any time in the past. We should have been clearer.) Comment: Phase-delay chronotherapy appears to involve unacceptable risk of becoming Non-24.
