Delayed Sleep Phase Syndrome

[InTheseBones]

Hi, I'm new here. I'm 15 years old and I haven't been diagnosed with DSPS, or even talked to my doctor about the possibility. Infact I only found out about it today. My story is a little complicated at times, so bear with me.
I have been struggling with my sleep since I first started secondary school (I think I'd just turned 11). It was really minor at first, just not waking up properly in the mornings. Being a little late to get to school. It was unusual for me as I was normally a "early bird" but it didn't affect my life too much, I was still normal, I just needed to set my alarm a little earlier.
Over the next couple of school years it got much much worse. I would sleep right through till about noon and then have to rush to get ready and go to school. Then I'd lie in afternoon registration and say I was only 5 minutes late, or an hour late. When this became extremely regular, and I would barely ever be in school in the mornings my parents were getting more and more annoyed at me. I would lash out in the mornings when they tried to wake me up, and they didn't understand that I wasn't choosing to be like this, it was out of my control. They just thought I was "lazy". I went "off the rails" when I was about 13. Staying out at night with friends, drinking, disappearing for days on end. My relationship with my parents had become very strained. They blamed my sleeping in on my behaviour, they thought if I was home by 8pm, by 10pm I would be relaxed and ready for bed. After alot of bad experiences, with police and social services, in a way I grounded myself. I didn't let myself go out and have fun, I felt it was too much temptation to go out and be the same person. Besides, I wanted to prove that my problems with sleeping weren't laziness or consequences of my "bad behavior" and that I really needed some kind of help.
During all of this drama, my attendance at school really suffered. I would go in once or twice a week, and rather than waking up late and going in the afternoons, as it meant a 20/30 minute walk to school I stayed off school completely. I wasn't going out atall, and I wasn't going to school atall, I had occasional doctors appointments where I'd have blood test after blood test to see if I was anemic, or had underactive thyroid. It wasn't until year 10 (14 years old) that I stopped coming in almost completely, maybe once a month, not even that sometimes. And that meant almost a week before hand I would be pushing my sleeping forward a few hours each day to switch from being nocturnal to normal. Or staying up all night to be awake for the morning. And then when I did go, it wasn't so much "well done for all your hard work" it was "well done for doing what you should've done anyway". The education welfare officer became involved, and we were searching for every possible medical reason, but we were running out, the one that was looming over head the whole time was depression But the child and family clinics mental health team had seen me almost a year before when I was acting out, and made their decision that "although I presented depressive symptoms I was not depressed". And they still stick to it now. They left the option open that I could return back and see them again, and suggested cognitive behavioral therapy, but I really didn't get on with the clinic as I felt they still remembered me as the difficult, defensive, hurt child I was when they first saw me, and I felt like now it was a completely different situation and set of emotions. And so my sleeping/school attendance situation continued to get worse.
Around my fifteenth birthday my parents divorced. My Dad and I had built back our relationship since I went off the rails. It hurt me to see him hurt. And the divorce did nothing for the lack of relationship towards me and my mother.
The combination of the divorce and and my Dad moving out was a big backward step in my emotional stability and my sleeping stability.
For a while it looked like my parents were going to get prosecuted for my "truanting" as there was no medical reason as to why I was missing school. Its still a danger now, and I am trying my hardest, but I'm really struggling to meet their expectations.
Now that my exams and my 16th birthday are coming nearer (the day I can legally move out of my mums house) I'm looking to the future. The doctors given me a weeks worth of sleeping pills to try and regulate my pattern, and my mums also been buying over the counter sleep aids to help me along.
Over the past few weeks I have been going into school almost everyday. I did every single one of m mock exams, and I even got a pass in a few of them(: I'm extremely proud of myself, 1) for making people believe that this isn't just laziness, and I am trying and 2) for trying and succeeding even through the rocky relationships at home.
This week has been extremely hard, I've only done 1 out of 3 days, and the days I've been off I've slept the whole way through the day, then taken the sleeping tablet and slept the whole night too. Meaning I was only awake from about 3pm till 11pm, but I still can't manage to get to school.

I just need an opinion of someone, do you think I have dsps? should I take info on DSPS to my school to show them its a real disorder? what suggestions do you have on trying to get through "normal" life with dsps?


Thanks in advance x

[narcofarkle]

Sweetheart, you sound very much like you have a sleep disorder. Which one? I don't know. I am narcoleptic myself. So is my son. My daughter and granddaughter have idiopathic hypersomnia. You can't do anything to help your situation until you get a diagnosis. Since you are underage, I would prefer to involve at least one of your parents in this conversation. So please show this message to them. The first thing they need to know is that the only doctor that can really help is one who specializes in sleep disorders. My doctor is a pulmonologist who specializes in sleep medicine. Once you have a definitive diagnosis, you can get the proper treatment. It will make all the difference in your life. Let me know if your parents need more information.

[YYCchick]

Just new here myself trying to figure out my sleeping stuff :) Just had to post to you to say what an amazing you man you must be. Soooo smart at 15 to see and understand so much of yourself and searching for help.

I'm not well versed on this sleep disorder thing (yet :) ) however I do know that my own clock has never worked on the 9-5 clock. I aslways thought I was just an insomniac however reading on this site I'm seeing that maybe that is not really the case. I think it's so awesome that you are searching for answers now and not waiting until you're 47 like me!

Where I live they have a "late school" for students 16 to 19 but will occassionally let kids in a bit younger. The school is at a local high school and runs from 12:30 to 4:30. There are also other coop and adult education schools that do the afternoon thing. My son is 17 and has struggled with sleep patterns since about 12. He goes to the late school now and is doing awesome. His self esteem has taken a huge leap as he no longer feels that "what is WRONG with me" thing.

Keep searching you and you will find your answers. Smart young guy :)

[sandyboo]

Hey, first your an amazing kid...My son is almost 15 and has dsps. He has never been in trouble but has been late for school and missed classes. I have obtained a letter from his Dr. that he has a sleep disorder to give to the school. Have the Dr. mention that it does cause tardiness and at times absents too. I have requested the school does not give him major core classes in the a.m. but minors like studies. Your Dr. should then refer you to a sleep specialist for observation. Let the school counseler know and stick to your diagnosis/symptoms. In the mean time my son will use meletonix natural tabs. Bought over the counter. He uses 1/2 a tablet or sometimes even 1/4 a tablet. This promotes natural sleep meletonin activation. This is not a sleeping pill per say but a sleep aide that permotes natual sleep agents. Talk to your parents or which ever is most understanding. This has helped my son get more sleep and not be so irritable in the a.m.

[archangel69]

Hey there Bones (for want of a better name!)

Reading your post took me back to my childhood. Unlike you I have suffered from this all of my remembered life and my mother tells me I was the same as a baby. I never fell asleep until it got light and you know exactly what that does to a "normal" day of school (or as you get older) work. Like you, i spent many fruitless years trying to be "normal" like everyone else, and for a while (10 years) i had a career, business, like everyone I knew, except i was running on about 3 hours a night sleep.

Like you I have just discovered this business about DSPS and believe me, after a lifetime of being told i was lazy, not bothered, stubborn, and even possibly crazy, this is a HUGE relief to me to know i am not alone. I am going to print the wikipedia stuff out (it's very good) and take it to my doctor, and I would advise you to do the same with your school. If I had known this when i was your age, well, let's say i would have played my cards very differently.

I cannot fall asleep before daylight unless i drink alcohol (DO NOT TRY THIS AT HOME!!!) and this affects every area of life. I am about to lose a relationship because of this. But hey, all is not lost.I was given some great advice by a counsellor about 6 years ago.

Do not try to be normal - be yourself

Sleep when you are tired, and find a work regime that fits in with your own patterns

When it comes to relationships find someone who accepts your patterning, or even better get it together with another night owl... we are not as rare as you think

(don't get together with a lark! disaster! believe me! unless they like you to tuck them in with cocoa and be awakened to your lovely breakfast after which you go to bed as they leave)

Some of the most creative people on this planet have "suffered" the same "disorder". Most of them seem to be writers, poets, playwrights, or other creative thinkers. Do you write?

after many years being a guinea pig for all sorts of crap, i finally found out, i was made like this so i just accept it... and i have done some amazing things by abandoning the mainstream agenda and striking my own path and timing schedule.

But hey, you may want to have a "normal life" and if so, there are options - see wikipedia for some of them. But be aware that its 50/50. some people can force themselves to readjust and some just cannot.

For myself, i see it as a gift. I am privileged to be awake when most of humanity sleeps and the airwaves are quiet, which allows me to think for myself, and produce some of my most original stuff, and which btw made me want to write to you to let you know you are not alone...

wishing you all the best, whatever you decide,
Dael

[InTheseBones]

Narcofarkle - I have told my Mum about this post. She was just as happy as me about all the support and guidance people have offered. THANKYOU!

YYCchick - Late school? That is so unbelievably brilliant! I’d never heard of anything like that before, and I wish there was one near us haha. There isn’t that I know of though. Haha but I’m no smart guy.. Smart girl maybe.. ;)

Sandyboo - I had to get a quick appointment with the doctors today as I have an ear infection (nice) and so I didn’t get to see my normal doctor who I’ve been seeing ever since my sleeping difficulties started. I mentioned coming across dsps on the internet to the doctor I saw today and said I was wondering who I’d have to go to if I wanted an opinion on whether I am a “sufferer”. I was really disappointed with what she said, she only stopped herself from saying “that’s complete BS” by saying “I could use a bad word here.” and went on to tell me that everyone has difficulties time to time with sleep and we should just look to see if we get enough exercise, and give ourselves enough time to wind down and relax before bed. I just nodded and agreed because she wasn’t the doctor I normally had. Any ideas anyone of where to go to get an opinion from someone who might actually take sleeping disorders seriously (theres no sleeping disorder clinic in my town that I know of).

Archangel69 - Thanks for your advice J I read the wikipedia information too, and its what I was planning on bringing to the doctors (second thoughts now though :\). But yeah, I used to write as a kid, you couldn’t stop me. And I do sometimes now, used to read loads too. I’ve lost my passion over the last few years, but you’re right. Being awake while everyone else is asleep is both a blessing and a curse. It makes normal life hard, but its so serene at the same time.




I really a over-whelmed by everyones responses. If I'd got the same response from he doctor today and not had them I'd probably just write myself off as a unwitting hypochondriac or something. Thankyou all x

[sandyboo]

Hello,
Im glad your happy as well as your Mom. Yes, some frownd on this when it is talked about. I just say "If we could only make blind people see" Most dont understand that people whom have this sleep rythum want nothing more then to have a sleep pattern like most the society they live. But we are all some what different. Your regular pediatric or primary care doctor should be able to refer you to someone in the sleep disorder disipline. Check hospitals as well for sleep clinics or look on line for one near by. If not your Dr. should be the one on your side giving you a Dr.'s note as to your condition. Keep a sleep history and show your average sleep times. Last week my sons average sleep time (on school vacation) was 2am to 11-12pm. This was faithful everyday/night. This is "HIS" sleep rythum, different from most but still the same as some others. We have found more peace in the a.m. by my son taking melatonex this also has vitamin B6. He takes 1/2 the dose which is one tablet. So on average he takes 2 1/2 pills per 7 day/week cycle. He doesnt take it on no school days or weekends. Believe me he is pleasant and the child I know (not crabby). He takes it 1/2 hr before bed and that is also quiet time and darkness. Darkness also permotes sleep aid naturally. He doesnt like going to bed early due to his age BUT he understands he must so he can have his 10 hours of sleep at the least and get to school a little late versa not showing up because he's sleeping. Stick to your guns and get Mom and the Dr. on board too. You wont be in high school forever and you may or maynot have sleep problems forever either. But this is what we are dealing with right here now. Keep Strong someone will listen trust me its a battle BUT someone will listen. Most are just figuring out the sleep deprivation is very harmful to ones health. Good Luck

[narcofarkle]

The only doctor who is going to take your symptoms seriously is a sleep specialist. Other doctors only make matters worse. I oughta know. It took me 40 years to get diagnosed! I have really suffered at the hands of other doctors. My sleep specialist is a pulmonologist who specializes in sleep medicine. I wouldn't trade him for 1000 other doctors-especially neurologists. They treated me worse than any others during my quest for diagnosis. And a neurologist above all should know better. If I knew what area you're in , I would do the research to find you a specialist, but I don't know where you are, so call your local hospital and ask if they can help you find one. Or you can do an internet search to find one. Or log on to the National Sleep Foundation website and see if there's a reference link. It's worth doing whatever you must to get your diagnosis.