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delayed sleep phase disorder
Iris L.
Posted: Monday, August 18, 2014 2:22 AM
Joined: 12/15/2011
Posts: 16102


I just discovered, after half a century, that the reason for my "insomnia" and daytime drowsiness and poor functioning is related to delayed sleep phase disorder, something I have been afflicted with since my teen-aged years. No one ever said this diagnosis to me nor had I read it anywhere before this morning.   

 

I had another one of my sleepless nights, awake all night until 9am.  After tossing and turning in bed for a couple of hours, I finally got up and got on the computer and searched for "resistant insomnia".  I came across one reference to delayed sleep phase disorder, and Eureka!  I hit the mother lode!  I found the answer to my sleep and chronic fatigue problems from fifty years ago.   

 

I've been on sleeping pills steadily for over two decades, with inconsistent results.  Now I know why.  Why didn't any doctor ever tell me about this before?  I've been complaining for years about insomnia and chronic fatigue. 

 

 

The treatment is two fold--to use bright morning sunlight or a light box to reset my internal clock.  Also, to change my bedtime later and later in order to reset my internal clock.  The judicious use of melatonin also has a role.   

 

I'm excited.  I'll let you know how this works out.  It's 20 after midnight now.  I'll stay awake until noon, then sleep from noon until 8 pm.  My days and nights will be mixed up for a while, but by the end of the week I should have slept around the clock and have a new, more functional bedtime!  And no fatigue! 

 

All these years my problems have been more serious than just being a night owl.  My problem is a real disorder--misunderstood, undiagnosed and untreated for 50 years!  I wouldn't be surprised if this delayed sleep phase disorder has some impact with my cognitive impairments.

 

Iris L.



 

 

 

 

 


Vita99
Posted: Monday, August 18, 2014 7:25 AM
Joined: 9/4/2012
Posts: 469


Hope this works for you.  Seems that some simple fixes for problems are never discussed!
Myriam
Posted: Monday, August 18, 2014 2:58 PM
Joined: 12/6/2011
Posts: 3326


Iris! How awesome that you came across this information. I look forward to hearing how the "reset" goes. There is so much that is unknown in the medical field. I believe good doctors have a strong artistic/creative side to see what can be possible. Unfortunately, I also believe the state of medicine is still archaic.
Iris L.
Posted: Monday, August 18, 2014 10:23 PM
Joined: 12/15/2011
Posts: 16102


I managed to stay  up all night and slept from 1:40pm to 5:40pm.  I got 4 hours.  I was wide awake all night and got a lot done.  I'll stay up again tonight and go to bed around 4pm Tuesday.

 

Iris L.


llee08032
Posted: Tuesday, August 19, 2014 7:56 AM
Joined: 5/20/2014
Posts: 4406


Iris,

I so hope this is the answer for you to get the sleep you need! Good Luck!


Iris L.
Posted: Wednesday, August 20, 2014 3:49 AM
Joined: 12/15/2011
Posts: 16102


I went to bed at 4:30pm Tuesday afternoon and slept until 8:45pm, a total of 4 1/4 hours.  I'll spend the night awake, and go to bed ~7pm Wednesday evening.  It was so hard, trying to stay awake, but I believe this will work and reset my internal clock.

Iris L.

Paul Hornback
Posted: Wednesday, August 20, 2014 6:58 AM
Joined: 8/9/2013
Posts: 584


Iris, hang in there! Sounds like you are moving your internal clock quite well. I hope this works for you so that you can get back to sleeping like you want.

I'm glad you posted this because I'm sure there are others who have a similar problem.

God Bless, Paul


Iris L.
Posted: Thursday, August 21, 2014 1:02 PM
Joined: 12/15/2011
Posts: 16102


Last night I planned to go to bed at 7pm, but went to bed at 8pm.  I was not sleepy, so I read in bed until 9pm.  I slept from 9pm until 3am, total of 6 hours.    I feel like this is working.   

 

Tonight I should have a normal bedtime, of between 10pm and 11pm.  I hope soon I can get back to sleeping for 8 hours. 

 

The other aspect of this treatment is spending 30-90 minutes in bright daylight in the morning.  I remember long ago, I don't remember when, I frequently used to have breakfast on my balcony in bright daylight.  Most of the time I am indoors under incandescent light.  I have to get this back started again.  For the past 5 years I have spent my mornings in front of my computer, reading the message boards.  I wonder how much reading on the computer screen has contributed to this sleep problem for me? 

 

What does my personal sleep problem have to do with dementia?  I read all the time that family members state their LOs have switched their nighttimes with their daytimes.  They stay up all night and sleep all day.  Why?  Could it have anything to do with getting less morning light?  I don't know.  It bears investigating.   

 

How to get LOs back on a more regular schedule?  Many families have to resort to sleeping pills for their LOs.  Obviously, this is a solution with limitations.  I was on sleeping pills for many years.  Fortunately for me, I finally was able to wean myself off.  What about others? 

 

What does all of this mean?  Although I was a night owl from adolescence, I was able to compensate easily when I needed to, in going to school and to work.  It was only when I became ill in the late 1980s that this sleep issue became a problem necessitating pharmacologic treatment.   

 

Researchers are looking for distinguishing characteristics of early dementia.  Could persistent insomnia be a sign of impending cognitive impairment and dementia?  Another area to investigate. 

 

Iris L. 


jfkoc
Posted: Thursday, August 21, 2014 7:18 PM
Joined: 12/4/2011
Posts: 17271


How wonderful!!!

I missed the begining of this...anxious for the end!


Iris L.
Posted: Friday, August 22, 2014 7:12 AM
Joined: 12/15/2011
Posts: 16102


I don't understand what went wrong.  I stayed up for four nights in order to turn around my internal clock.  I felt like the chronotherapy was working.  But last night I fell asleep around 11:15pm, and awoke at midnight--only 45 minutes. 

 

I've been up since then.  It's now 5am.  I tried reading, but finally had to get up because my mind was wide awake.  I'm still wide awake.  I'm having some hot cereal now.   

 

I have to figure out what to do next.  I'm not going to stay up all night again.  Well, I guess I am, since I've been up since midnight. 

Iris L.
 


Mimi S.
Posted: Friday, August 22, 2014 8:42 AM
Joined: 11/29/2011
Posts: 7036


Iris, you've had this disorder how long? 

As others have said: give yourself time. It will take time to reset.
Do you only use your bed to sleep in? No reading!
 
Good luck!

jfkoc
Posted: Friday, August 22, 2014 9:37 AM
Joined: 12/4/2011
Posts: 17271


the process may be harder than you hoped... I know that won't stop you!

Maybe this forum could be helpful...


www.psychforums.com/primary-sleep/topic36372.html


alz+
Posted: Friday, August 22, 2014 9:40 AM
Joined: 9/12/2013
Posts: 3526


very interesting...

 

My nose was broken and I did not have it "fixed" when I was about 20. I breathe through right side I guess and lately have been snoring VERY loudly so husband wakes me enough to stop it - but not quite sleep apnea.

 

But before I read your topic I checked an old Merck Manual on sleep apnea and it described what you found, the daytime fatigue, waking up with a start or a choking/coughing. Said not to use sleeping pills or tranquilizers. I had been using Ativan to GET TO sleep. Cut that out now.

 

I hope you find a way to sleep deeply. I use a mouth guard made by dentist and sleep on side to prevent snoring, but lack of oxygen and lack of brain rest is reported in that old book.

 

Will follow how this goes. I wake up suddenly often in state of fear, was told part of ptsd. I think ALZ is like having ptsd.

 

Sleep and dreaming are really important to depression, mental clarity, and energy. How could a doctor(s) not know this simple stuff?


alz+
Posted: Friday, August 22, 2014 10:16 AM
Joined: 9/12/2013
Posts: 3526


jfkoc wrote:

the process may be harder than you hoped... I know that won't stop you!

Maybe this forum could be helpful... 


 

 

www.psychforums.com/primary-sleep/topic36372.html 

THANK YOU!

Iris L.
Posted: Friday, August 22, 2014 3:32 PM
Joined: 12/15/2011
Posts: 16102


Mimi--It's hard to think of this as a disorder because I've been like this since I was a young teen--so for about 50 years.  It's apparently normal for me, but the disorder comes in fitting in with the outside world, because I need to be able to function during the day.  Otherwise, I could just stay awake all night and sleep all day. 

Alz+--yes, sleep is so important in relation to depression and mental clarity.  I think part of the reason I was diagnosed as having depression is because of my sleep difficulties, which predated the period of my life when I could say I had actual depression, by at least 20 years. 
 

 

I never had ptsd, however.  I was diagnosed as having sleep apnea after an overnight sleep study.  I wonder if the sleep study would be reinterpreted in light of this new finding? 

 

Jfkoc--thanks for that link to that sleep forum.  You're right, it may take longer to fix this.  It seems other people who have more experience in understanding this have a hard time resetting their internal clocks, too.   I'm going to have to research more and figure out what to do.

After the 45 minutes last night, I fell asleep this morning from 6am to noon--6 hours, making a total of 6 hours 45 minutes.  I feel wide awake now, after a full day's sleep.  (LOL)
 

  

I spent so much time sleeping until 1 or 2 o'clock in the afternoon and feeling bad about myself because I was asleep while everyone else was up and active.  Now I understand it, and I don't have to feel bad any more. 

 

I wonder what is the connection between my cognitive impairment and this sleep disorder?   

 

I've got some more figuring out and research to do. 

 

It's very interesting.  I wonder how other members on this board sleep?  I believe Myriam said she falls asleep as soon as her head hits the pillow.  (sigh)  How wonderful to be like that!


Iris L.
 

 

 


jfkoc
Posted: Friday, August 22, 2014 6:52 PM
Joined: 12/4/2011
Posts: 17271


I would put money on the sleep disorder being a contributor to cognition.  Dick has sleep apnea and I know I have read somewhere that that is a contributor.

 

Let us know what you find and we will help run down info.

 

From Cleveland Clinic: 

  • Avoidance of light at night. Any screen time with a back light (hand held devices, computers, TV etc.) can theoretically delay the sleep rhythm and make it harder to go to sleep. These should be avoided in the few hours prior to bed time, especially when trying to shift the rhythm.
http://www.sleepeducation.com/find-a-center 

DSPS Q&A - Circadian Sleep Disorders Network

www.circadiansleepdisorders.org

Iris L.
Posted: Friday, August 22, 2014 7:59 PM
Joined: 12/15/2011
Posts: 16102


Wow, Jfkoc, you are finding links for delayed sleep phase disorder that I didn't find when I searched at the beginning of the week. 

Anyway, I've been thinking of something,  My memory problems got worse in 2006.  I discovered that the townhouse I had recently purchased has a huge mold problem, and I couldn't move into it.  It would have cost $25,000-$50,000 to mediate the mold and repair the damage.  I wanted to recind the purchase, and was taking legal steps to that end. I noticed my short term memory was severely affected during the time I was dealing with the mold inspector and mold remediators
  I'm pretty sure this mold exposure was the impetus to cause my cognitive decline! 

 

The forensic mold inspector I hired told me the only problem mold can cause are allergic symptoms.  He told me I didn't have a case to sue the home seller on a medical basis.  The allergist also told me he could not back up my claim that the mold exposure had damaged my health.  When I think back, the memory problems came up within four weeks of exposure to the mold.  I'm certain now that my memory problems are due to the mold!  Not all of them, because I had memory problems before the mold exposure.  But certainly they got worse after the mold exposure! 

 

I found a good article able poor deep sleep and memory problems in seniors: 

 

Poor sleep in old age prevents the brain from storing memories

The connection between poor sleep, memory loss and brain deterioration as we grow older has been elusive. But for the first time, scientists at the University of California, Berkeley, have found a link between these hallmark maladies of old age. Their discovery opens the door to boosting the quality of sleep in elderly people to improve memory. 

read more:  http://newscenter.berkeley.edu/2013/01/28/sleep-memory/  

 

This is not specifically about Alzheimer's disease, but I think it might still be relevant.  People with AD have poor sleep and poor cognition.  More research needs to be done into the connection.  Perhaps specific therapeutics to aid deep sleep will become part of the arsenal of treatment for AD. 

 

Iris L. 


Iris L.
Posted: Friday, August 22, 2014 8:39 PM
Joined: 12/15/2011
Posts: 16102


Jfkoc, thank you again for locating the Circadian Sleep Disorders Network for me.  This looks like a wonderful site with lots of information, advice about treatment and many, many links.  I can't wait to read more!  Thank you again, so much!!! 

Iris L.

llee08032
Posted: Saturday, August 23, 2014 8:15 AM
Joined: 5/20/2014
Posts: 4406


Iris,
I spent so much time sleeping until 1 or 2 o'clock in the afternoon and feeling bad about myself because I was asleep while everyone else was up and active.  Now I understand it, and I don't have to feel bad any more. 

Good! Don't feel bad about needing to sleep or for feeling tired. Listen to what your body tells you.


I've been taking Trazodone for several years for sleep. There is only a 15 minute window for when it's effective so you have to take when you start nodding off. If you take it before your ready to fall asleep and your wide awake there is a tendency to go past the 15 minute window and it will not work. My sleeping problem is staying asleep. If I am lying down reading I doze so I read every night and then when I start to doze I take the Trazodone. I don't like being on even the Trazodone but I cannot function w/o sleep and it is the lesser of the two evils.

You're effort and work in trying to sleep well is admirable. Sweet dreams to you.

Iris L.
Posted: Saturday, August 23, 2014 9:49 AM
Joined: 12/15/2011
Posts: 16102


I got 7 hours of sleep last night--from 11:30pm to 6:30am.  Yea!  This is turning around! 

I took melatonin about 3 hours before I went to bed.  Perhaps that helped too.
 

 

I'm off to a free legal workshop.  I'll write more later.

Iris L.

 


Iris L.
Posted: Saturday, August 23, 2014 12:28 PM
Joined: 12/15/2011
Posts: 16102


I didn't go to the workshop, so I'm back.

Ilee, I used to take trazodone, along with many other sleep aids.  Trazodone made me feel drowsy, but I also felt somewhat disoriented.  I didn't like the way I felt on it.  I was very happy to switch to Lunesta, with which I had no side effects at all.

As far as feeling bad about sleeping late and feeling tired.  You are in the nursing field so you know what pressures doctors are under.  We are taught from medical school to have a high tolerance for lack of sleep.  Functioning under lack of sleep is considered to be a badge of honor.  To complain about lack of sleep or fatigue is considered to be whining and not seemly for a doctor. 

When I was younger, I could tolerate lack of sleep better.  During my training period, we were able to compensate because we interns covered for each other when we got too tired.  When I was in the military, this was not an issue because in the military they are very concerned with positive health habits.

When I became an attending with the group I joined, the night call schedule was a problem.  The adult doctors had the next day off after night call.  In pediatrics, we still had to do a full day's work in the office, no matter how busy the night call was. 
 

 

Weekends were worse.  We were on call Friday night, all day Saturday and all day Sunday, and then begin again on Monday.  It became too much for me after a few years.  I asked for the accommodation of limited duty to switch to no night call for a while, because I wasn't feeling well, but I was refused.  This was in the days before the Americans with Disabiities Act, which made work accommodations protected under the law. 

 

Requesting work accommodations for the reason of lack of sleep was considered unspeakable.  I would have been mocked and ostracized.

The medical profession was just beginning to realize the risks of poor sleep in doctors.  Protections were being given to interns and residents in New York.  But I was no longer in training, and I was not in New York.  I was unprotected.  This was a devastating time in my life.  I could not keep up, and I had to take a sudden leave of absence on December 22, 1987.  I never was able to return to work.
 

 

At that time I was diagnosed as depression/anxiety.  There was no mention of sleep deprivation as a diagnosis or cause of my problems.  I was even accused of malingering!  As I said, I was devastated to hear this.  No one had ever accused me of not giving 100% effort!

This caused me to have low self-esteem.  I did not initially have depressive thoughts, but after the way I was treated, I became depressed.  The only times I feel depressed is when I think about the way I have been treated by my former colleagues or my former friends.  I am not a depressed person otherwise.  I did have a deep depression when a geriatrician told me I had dementia, but this was much later.  For the most part, I am not a low self esteem person.  Only if I am accused of malingering or accused of having a pity party or something like that, do I feel bad.
 

 

After 5 years of being treated with many different antidepressants, the psychiatrist said my diagnosis was not depression, but chronic fatigue syndrome.  This was later changed to systemic lupus.  But I know now my medical problems began with that prolonged period of sleep deprivation beginning in 1986.


The ironic thing is, my medical employment caused my sleep deprivation and the subsequent loss of my medical career.

Iris L. 

 


Myriam
Posted: Saturday, August 23, 2014 5:56 PM
Joined: 12/6/2011
Posts: 3326


Iris, so glad you got your sleep/wake clock on track again!
creeky88
Posted: Sunday, August 24, 2014 1:03 AM
Joined: 7/12/2014
Posts: 35


 

I was diagnosed w/ EOA  Jan, 2014 after completing 6hr neurocognitive testing, mri, physical & blood tests. Will hopefully be taking a pet scan in Sept. to rule out ALZ. 

 
My dad, his sister(both living) & their mom have/had ALZ. 

Well, it looks like I can add yet another symptom/illness that can mimic ALZ to my incredibly long list: 
Delayed Sleep Phase Disorder, almost 20 yrs of 12 hr shift work in the petrochemical field.( 4 days on, 4 days off, then 4 nights on, & repeat. Frequent overtime which came in 2 day increments, so you would work 6 on & 2 off, etc.), 
Bipolar, PTSD(I've had yrs & yrs of therapy, alcohol/drug abuse(clean & sober 26 yrs), Obsessive Compulsive Disorder, major anxiety/stress(better now), a cocktail of psych meds, very unhealthy eating(now adhering to best practices-starting full workout sept 1), vitamin deficiency, sleep apnea(was just diagnosed, again. Had gastric bypass in 1999 @ 340lbs, lost a lot of weight & quit using the CPAP machine), major lack of brain activity during long periods of depression, not sure if these count; COPD-Asthmatic Bronchitis, Bulimia, heavy (ex)smoker, & I'm sure there are more. 

So, the good news is I could have pseudo dementia which is reversible. The not so good news is its incredibly hard to treat. 
Perhaps there's a bit of denial, ya think??     Whatever...  : /     
 
This forum is incredibly positive, informative & supportive, but I'll probably remain a reader & not a poster, as I don't feel the hope, yet. I'm overwhelmed at all the info ya'll research & share! My apologies ahead of time for any slow responses, as I might read this forum for hrs & hrs & then disappear for a week  
 
I'm actually doing semi-ok right now. I still live alone(w/my 2 incredible fur-babies!), am on disability but am able to do a few landscaping maintenance jobs to help make ends meet.   

If I don't post now, I won't know where to post.  Tks for allowing me to ramble. 

   

 

 


llee08032
Posted: Sunday, August 24, 2014 8:35 AM
Joined: 5/20/2014
Posts: 4406


7 hours is fantastic! I hope you can sleep 7 hours or more on a steady basis. 

 

 

The medical field is a set-up for sleep disorders, sleep deprivation, and the shift work sleep disorder and a host of others!

 

 

I was in nursing school and completing internship when I was suddenly widowed. I ended up dropping out and then later pursued my graduate degree in clinical counseling psychology. Additionally, I completed 60% of doctoral course work but decided I did not want to spend more $ and time when I already had LPC license like some of the doctoral candidates were pursuing.

 

 

My current position is in a residential program and involves on-call responsibilities not to the extent of what your level of on-call involved but nevertheless, sleep disruptive

and intrusive. As you know on-call involves bringing your work home with you. This weekend I've responded to 6 calls one of which was at 2 am and there are probably a few more to go. Unlike you my physical presence is not required for the most part and I can usually resolve most issues by phone.

 

 


Iris L.
Posted: Sunday, August 24, 2014 12:17 PM
Joined: 12/15/2011
Posts: 16102


So far, so good.  I got another 7 hours last night, although later, from 12:30am to 7:30am.  I went to bed at 11:30pm and read for an hour.  I'm got to work on getting to sleep before midnight.  I'm pleased with my progress nevertheless.

Ilee, have you given any consideration to the thought that some of your symptomatogy may be due to sleep deprivation?  I've been reading about sleep disruption a lot lately, and sleep deprivation can be the cause of many problems.  Check it out. 

It would be great if your symptoms were due to sleep deprivation, because then you would know how to correct that.  You would just need to be sure to make up your sleep debt on the weekends, or whenever else you had the extra time.  It's not ideal, but it could work for you.

Iris L.


Iris L.
Posted: Sunday, August 24, 2014 6:48 PM
Joined: 12/15/2011
Posts: 16102


Apparently I had some more sleep debt.  I had to go back to bed at noon because I felt drowsy, and slept 3 1/2 hours.  I'm feeling pretty awake now.  I'm exposing myself to the daylight that is left.

Iris L.

jfkoc
Posted: Sunday, August 24, 2014 8:48 PM
Joined: 12/4/2011
Posts: 17271


Iris....what about one of those daylight lamps?
llee08032
Posted: Monday, August 25, 2014 7:40 AM
Joined: 5/20/2014
Posts: 4406


I do sleep through the night except for bathroom runs and am able most of the time to fall back to sleep after a call during the wee hours. I feel very fortunate that the Trazodone works for me but someday would like to wean off.

 I had a nice long nap yesterday also.


Iris L.
Posted: Monday, August 25, 2014 11:20 AM
Joined: 12/15/2011
Posts: 16102


Jfkoc--I'm thinking about a light box.  I have beautiful southern CA sunlight that I don't take enough advantage of.

Ilee, good for you with your sleep.  I found that I became tolerant to all the sleep aids except Lunesta after about 3 months, so I had a routine of switching every three-four months.

I slept 5 1/2 hours last night.  I got to bed late because I was on the telephone.  I can't have any more late night calls.  I got up at 7:15am nevertheless, and I'm wide awake and not drowsy.  I'll see what today is like. 

Iris L.

Iris L.
Posted: Tuesday, August 26, 2014 7:43 PM
Joined: 12/15/2011
Posts: 16102


I got in another 7 1/2 hours last night, beginning from 12:45 am.  Today, I was able to go shopping with my girlfriend for 5 hours!   

 

This is a big change for me, because I just haven't been feeling up to going out, especially if I had to  be on my feet for a long time.   

 

I feel that resolving my sleep disorder is making it possible for me to get out and about and live a more sociable life.  I came home and I'm still not tired.

Iris L.
 


Myriam
Posted: Tuesday, August 26, 2014 10:03 PM
Joined: 12/6/2011
Posts: 3326


Yaeeee!
jfkoc
Posted: Wednesday, August 27, 2014 8:42 AM
Joined: 12/4/2011
Posts: 17271


Iris...so wonderful I am remembering Cathy who used a lot of bright light as therapy for her partner...think it was for "sun-downing" but isn't it all related to circadian rhythm?

Anyway it is terrific that you have found something so very helpful.

 


Iris L.
Posted: Wednesday, August 27, 2014 2:25 PM
Joined: 12/15/2011
Posts: 16102


I  tired myself out from the 5 hours of shopping yesterday, because I slept for 10 hours last night! 

Jfkoc, yes, cathyjm talked a lot about light therapy.  She lived in Georgia.  I was hoping to make good use of our southern California natural sunlight in the mornings.  But when I have my appointment with the sleep doctor in two days, I'll ask if he has recommendations about a particular brand of lights. 

Iris L.

Iris L.
Posted: Thursday, August 28, 2014 4:58 PM
Joined: 12/15/2011
Posts: 16102


I'm back to having trouble again.  Last night I slept from 11:30 pm to 1:30 am, two hours.  then I was up until almost 9 am, then slept until noon, and I'm still feeling sluggish.  I have no motivation to do anything.  This is not good.    I see the sleep doctor tomorrow.

Iris L.

Iris L.
Posted: Friday, August 29, 2014 3:35 PM
Joined: 12/15/2011
Posts: 16102


I had my appointment with the sleep doctor this morning.  BTW, I got only 4 hours sleep last night, from midnight to 4am.  He said he had heard a seminar talk from a sleep doctor who had a circadian rhythm clinic in Utah.  "It's hell to treat!" was what the specialist had to say.  How encouraging is that?  (Not!) 

 

My doctor told me something about using light therapy two hours before the nadir (lowest point)  of my body temperature.   So this is something else I have to research, because he didn't go into detail. 

Thank God for the internet.  I'm finding a lot of info about light therapy and timing it to one's body clock and body temperature.  But I must read and re-read to take it all in.
 

 

He also said I could continue taking Lunesta on an as needed basis in the future. 

 

Well, at least I know I'm on the right track.  He just said, see how it goes and come back in a year.   

 

In clicking around I came across something about using light therapy for patients with dementia.  I'll check into that more, and report back. 

 

Iris L.