Delayed Sleep Phase Disorder

For everything and anything else not covered in the other RLS sections.
SquirmingSusan
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Delayed Sleep Phase Disorder

Post by SquirmingSusan »

I was "officially" diagnosed with this about 1-1/2 years ago, and it seems like there are several others in the forum who have this condition. There is an excellent article on Wikipedia about this, written by sleep doctors. For those of you who have ever been asked, "Why don't you just go to sleep earlier and get up earlier," this is the article to send them to. Highlight the part about how treatment is difficult, and at least 90% of people who are treated, relapse within a year.

There is also an article in this month's "Real Simple," written by a woman who just loves to stay up late and sleep late, and who has decided to quit apologizing for that. Now if people call her in the morning, she answers the phone in such a way that people know she was sleeping, and when they ask her if she was sleeping, she says, "yes I was," and hangs up on them. LOL. My hero.

Anyway, here's the Wiki link.

http://en.wikipedia.org/wiki/Delayed_sleep_phase_syndrome
Susan

ViewsAskew
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Post by ViewsAskew »

The first time I read about this, I KNEW this was what I had. But, I could always manage it until the RLS got bad. Now? Forget it.

UNlike this woman, I just don't answer it. I have my ringers turned off. I call them back when I get around to it.
Ann - Take what you need, leave the rest

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SquirmingSusan
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Post by SquirmingSusan »

My dh (and right now the "d" doesn't stand for dear) just told me he doesn't think I have this condition. Unbelievable. :evil: I have struggled so long and so hard, and tried every treatment option known to modern medicine. I just can't believe he said that. :cry:
Susan

psychick
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Post by psychick »

Thanks for posting this Susan - I've been keeping a sleep log since August 08 because I think my lifelong insomnia has been misdiagnosed and that I actually have DSPD. Over the past year I've been averaging sleep @ 4am and wake @ 11am or noon, then over the holidays it shifted to sleep @ 5-5.30am and waking @ 1.45pm. I couldn't function with this (I'm an independent contractor so I have alot of freedom in my scheduling, but I wasn't able to see my clients when I was getting up so late.) So I have been trying to shift my schedule so that I get to sleep around 3-3.30am and get out of bed by 11am. This has taken over a month, but I'm finally there. I never thought I'd be thankful to be getting to sleep @ 3.30am!

Anyway, just spreading awareness of this 'different' sleep pattern is so important. Our culture has so many prejudices against those who don't/can't make the 'early bird' schedule work for them. 'lazy' 'sleeping the day away' etc. I get so defensive when talking about my sleep schedule - "But 7-8 hours of sleep isn't being lazy!!" Thanks again.

SquirmingSusan
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Post by SquirmingSusan »

In the Wikipedia article it says that about 3 in 1000 people have DSPD, so it's not very common. I wonder what percentage of RLS sufferers have associated DSPD, because many of us who have RLS do seem to have it. I've struggled with this problem since college, but since my RLS has been worse, the DSPD is worse as well. And when I took Requip, for a couple weeks, it had the effect of allowing me to go to sleep and wake up much earlier, so I could keep a normal schedule. It makes me wonder if my delayed sleep phase is secondary to RLS. I wonder if there are studies out there about this.

Yeah, I get really sick of people thinking I have some kind of character defect because I can't do the early bird schedule. My mom just had major issues with it, and when I was caring for her this fall when she was terminally ill, just didn't cut me any slack. One morning she woke me up so much that when I did finally give up and get up, I almost got into 2 car wrecks, and then got pulled over by the police for driving with my tailgate open. Of course I didn't tell her that, 'cuz she had her own issues to deal with at the time. But even my husband just doesn't get it. And I'm just so, so upset today that he said he didn't think I have it. Yeah, right, the leading sleep doctor in MN diagnosed me with it; who the frick is he to tell me I don't have it. Jerk. :evil:

It wouldn't be so bad having other people question my sleep "habits" (they're not habits, people!) if I already didn't question my value to my family and society because of being on a different schedule. I work out of home as well, running a custom embroidery business, and it's hard to do the stuff that needs to be done during business hours. But once that stuff is done, the rest is easy to manage. I can run my machine all night if I need to.

I just would so like to get back into my calling, which is ministry. But who is going to hire a minister who can't get up in the morning? You want judgmental people, try dealing with a search committee in a church! And there's always someone, ime, in a congregation who just feels the need to call at 6am just to make sure I'm up. Well, when the kiddos are out of high school, and the disabled daughter is a bit more set up for life... I'll tackle that. The only day it has to be necessary to get up in the morning when working as a minister is Sunday, and then I can crash afterward. People are usually happy when I work from noon to 9 or 10 pm....
Susan

SquirmingSusan
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Post by SquirmingSusan »

Psychick, I so know what you mean that it's great to get to sleep by 3:30am!

One of the reasons I'm kind of on a rant today, other than my dh being such an idiot, is that we just realized that my 17-year-old son has the adolescent version of this. :( He has just been struggling with High School, and his teachers keep telling us that he's always falling asleep during classes. He just had a total meltdown last night, and was crying for hours. He's been perpetually angry for a couple years, just snarky and sarcastic, and constantly pushing my buttons and making nasty remarks to his sister. At dinner my family was playing "let's pick on mom and tell her what a nutjob she is" and I pointed out to my son that he's angry a huge amount of the time. Things just kind of went downhill from there... Families can be so wonderful, and then there are those times when I wonder what the point it... Yesterday was one of those days.

Anyway, after the meltdown, he was talking about just how stressed and overwhelmed he is constantly, and tired. He only really gets 4-5 hours of sleep a night, and his high school seems like it's the only one that has moved it's schedule earlier when the rest of them moved their schedules later to accommodate teenagers' need for more sleep. :evil:

I read this report, and then a couple of the links to articles about teens with this condition, and I realized that he really does have this thing. I talked with him today about options for dealing with it. I'm calling his counselor and seeing if he can go independent study on his first hour class, so he doesn't have to be at school until 10am or so. He doesn't have AP classes during first period, so that could work. Actually, it will work. We'll make it work! We homeschooled him up until 7th grade, and my daughter through high school, so we can pull this off. And with a disability like that the school really has to accommodate him.

It would be nice to have my son back. He used to be such a happy, social thing. Now he barely does anything with friends, seems quite depressed, and just scrapes by on schoolwork, which he gets away with because he's brilliant.

I'm going to need to take him to the sleep doctor who diagnosed me with the condition, because most sleep doctors misdiagnose it.

At least his isn't associated with RLS. I thank God that neither of my kids has shown any signs of having this.
Susan

Jitterlegs
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Post by Jitterlegs »

Susan, in reading your post about your son, yes the school would have to accomodate, but he would have to be diagnosed first and then get an IEP--which takes a while, and maybe you know this already. I did this with my daughter who has other health issues, but mornings are really tough for her for other reasons besides being a kind of "night owl". She just cannot sleep before 11-12, and she is rarely not home in the evenings. She starts classes 3rd hour-she is a sophomore. It has made a world of difference with her health. She missed an entire semester in 8th grade and a full quarter in 9th. I truly believe the extra sleep has made all the difference. I had to fight to get an IEP for my daughter. She is a 4.0 student, and unless she was failing or "not achieveing her potential", they didn't want to do it. Why should a student have to get to that point in order to get acoomodations when there is an obvious problem? Besides what is her real "potential" if she gets 100% on the testing??? I have learned it is much better to be proactive than reactive in that regard. I sure hope they don't try to deny it's renewal next year! Being a teen is so hard, I feel badly for your son. No, people just don't get it!! They thought my daughter should just go to bed at 8pm!! Yeah, right, and give up ALL her social life even if it WERE possible for her to fall asleep that early????? They need to be kids and enjoy their life too! I'd definitely get your son to the sleep dr. and get started on that. My daughter is also looking to do online college courses next year for PSEO. She might not have to be to school until noon! That would be wonderful for her! So, fight for your son and find him the help he needs, and deserves! Good luck. It is so terrible to see our kids suffer!

SquirmingSusan
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Post by SquirmingSusan »

Jitterlegs, thank you so much for your post. It's so inspiring to me when I hear of other parents who are willing to take on the status quo in the interest of keeping their kids healthy. That's just great that you were able to do all that for your daughter.

PSEO is one of the best programs ever. I homeschooled my daughter all the way through high school, and the last 2 years she took PSEO classes full time. Nothing like 2 years of college for free. We have a community college about a mile from our house. Sometimes I wish my son hadn't been such a terror to homeschool that I sent him to school in 7th grade. Sure he has AP classes, but I really think that there's nothing like the real thing. Plus the community college puts way less pressure on the students than his "overachiever" high school, which is supposed to be "one of the best schools in the state", whatever that means. (We're the best, we kill our students faster?)

I've got him convinced to enroll in PSEO next year at the college, so he can take evening classes there, and then just have regular school in the afternoon. This would all be so much easier if he wasn't in an elite, by audition only, choir. He loves choir, has an awesome voice, and there's no way that I would totally pull him out of school at this point. His choir is going to Costa Rica over spring break. But anyway, that leaves us to work around choir, which is 4th hour. They're on block scheduling, and only have 4 classes day.

So yeah, I need to get started on the plan to get Jason some sleep. I'll call and schedule that appointment tomorrow and hope they can get him in quickly!
Susan

Aiken
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Post by Aiken »

Susan--

I was officially diagnosed with delayed sleep phase a few years before I developed RLS. (I was therefore lucky to already have a sleep doctor available when I got RLS.) Like your son, youth and school were miserable for me. All of the adults gave me grief and shame for not going to sleep when I was "supposed" to--they could do it, so obviously I could, too.

I know you shouldn't need to defend yourself, but if you want supporting evidence, delayed sleep phase can usually be diagnosed with a sleep study.

In my case, I think the evidence was that my body temperature didn't dip when it was supposed to. It's supposed to dip in the evening, presumably to make you want to snuggle down and get dozey. It also didn't dip as much as it was supposed to, which is another problem, the term for which I don't know.

By the way, DSPD was the official diagnosis for me, but now that I explore wikipedia, I find that there's a variant that's actually more accurate for me, so it may be another thing for you and your son to check into: http://en.wikipedia.org/wiki/Non-24-hou ... e_syndrome
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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Post by ViewsAskew »

I'll look at your link soon Aiken. Just wanted to add that my understanding of this is limited, but what has always made sense to me is that some of us have shortday clocks, some of us accurate, and some long. So, my day is, say, 26 hours instead of 24. The people who are exhausted at 8 PM and can't stay up to watch the news, have a short day - maybe 22 hours.

Like you, I was miserable in High School. I had three alarm clocks and one was about a foot wide with HUGE bells on top.

Since one of the potential problems causing RLS is a screwy internal dopamine clock, that MUST be involved in our general problems.
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woodsie357
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Post by woodsie357 »

I think my 13 year old son may have this too. He takes huge amounts of sleep aids and NOTHING. He just can't sleep till 3am. He's also complained about his legs, I'm just not sure if he's feeding off of my symptoms or not. Thanks for posting about this guys, and gals.
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ViewsAskew
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Post by ViewsAskew »

When I was a teen and first experienced the leg stuff, I thought I was imagining it, that I somehow wanted to be "part of the tribe." (My mother and grandmother both suffered, my grandmother constantly.)

I didn't say anything for a long time, feeling it couldn't be real. Since you can't really describe it, I couldn't tell if it was what they had or what I thought they had, lol.
Ann - Take what you need, leave the rest

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Neco
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Post by Neco »

Please be real careful about letting him take OTC sleep aids.. They almost have Diphenhydramine, which will severely exacerbate RLS if he in fact has it. You should sit down and talk with him about his leg problems, without dropping as many clues as possible, to rule out unconscious mimicking, etc and then decide if you need to speak with the doctor about possibly confirming a diagnosis.

RLS has been diagnosed in young people, but I'm not sure what the figures are on the rarity.. I think Dr. B or one of the other experts mentioned diagnosing someone as young as 3 years old, but I'm not dead certain about that. I do remember someone, somewhere commenting on this though.

mackjergens
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RLS in children

Post by mackjergens »

here is a link to an article on RLS in children.

http://www.medscape.com/viewarticle/533366_6

ViewsAskew
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Post by ViewsAskew »

Zach wrote:RLS has been diagnosed in young people, but I'm not sure what the figures are on the rarity.. I think Dr. B or one of the other experts mentioned diagnosing someone as young as 3 years old, but I'm not dead certain about that. I do remember someone, somewhere commenting on this though.


RLS is not that uncommon in children (A Mayo Clinic study puts it a 6% of the children they had seen for sleep problems if I remember correctly) and is accepted as being possible from birth. I think another study put it at 2% of the population.

Very important is regular exercise and good sleep hygiene and a regular schedule. For those with a long clock or phase delay....that's almost impossible (she types knowing that she was "supposed" to go to be 1.5 hours ago...).
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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