Delayed Sleep Phase Syndrome

[loranna21]

Hey,

Since i can remember i haven't been able to sleep early and could never wake up. I remember being 7 and sitting on my windowsill on summer nights so i could read without my parents realising i wasn't asleep. When it wasn't light i would lie under my duvet for hours with a torch reading or even watching dvd's on my laptop. i would never be able to sleep before 1am and often would be awake until 4/5am. Then my dad would attempt to wake me at 7am for school. It would regularly take him an hour to be able to force me into wakefulness and this would make both my parents really angry at me for wasting their time and being useless etc. It also used to be a family joke when i was a kid that i could get up in the night (4am) and use the bathroom but wouldn't remember it in the morning.

It got worse as i became a teenager. Not sleeping til 3-5am every night, and never being able to wake up independently. I would sleep through my alarm clock without realising or just turn it off. At uni it has gotten a lot worse because there is no one else around to wake me up. During exam time i will stay awake all night before a 9am exam as i am too scared of not being able to wake up for it. All my coursework is done in the wee hours of the morning and i will quite happily stay up for 3 nights on the trot to get it done. Despite this i will never feel sleepy in the day and it is only around 6-8am that i feel ready to crash.

Last year i lived in Malaysia for 5 months and it got even worse. I wouldn't sleep til 6-8am which is fine cos its kinda the culture. But then i would wake up at 2 - 4 pm having missed all my lectures. My friend who lived next door to me had to come and wake me up for my exams or if i had important lectures or meetings.

When i came back i tackled the subject with my GP. She told me that it was a childhood thing that i would grow out of and that it was probably because of my studenty lifestyle!! She refuses to take me seriously.

This summer i am on a lab placement which involves working 9-5 monday to friday and waking up at 6am to get the bus on time. So basically i sleep 1 - 2 hours every night!! i have my parents phoning me every morning to wake me but i often dont wake up to the phone even though its on max volume. Its killing me and today i woke up at 2pm and so missed work .. not sure what the consequences of that will be! ... yet again i have stumbled across this site and this time i am determined to do something to get my condition recognised. But what do i do? i feel so small and insignificant and i dont want to go back to the gp just for her to laugh me out again.

Any help out there i would be eternally grateful for :)

Lorna xx

[Norway]

Hi. I just answered the post "No one believes me.." - some info there including a nice quote from researcher Yaron Dagan. But I suspect that you are not in the USA, where if we used what we call a torch in bed, we'd burn down the house. We call it a flashlight ;-)

If you are in the UK, things are worse there than in the USA with regard to circadian rhythm disorders, and that's bad. Several people I know of, have tried to get their local health authorities to send them to one of the few competent sleep clinics, without any luck. In a great many countries, the researchers know about these things but the doctors with patients don't. Yet.

If your gp laughs at you, I'd guess that she'd not take kindly to you bringing in reams of articles and research reports? The teen version of DSPS often starts at the beginning of puberty and often is outgrown by 20 or so. But AFAIK when it starts in early childhood it is chronic. I've certainly had it all my life. Do they let one include a url in these forums? I'll try. All I know about DSPS including treatment/management is in my blog: http://delayed2sleep.wordpress.com

[loranna21]

Hey,

Thanks for the support :) ... i'm going to take reams of research to my gp anyway ... i'm a science student so its what i do best!!

I saw on the London sleep clinic website that you can volunteer to be used in research to be diagnosed for free or something like that so if she won't do anything maybe i'll try that!! and the other uni local to me has a sleep research unit so i will try there if i dont get an answer out of the gp!!

and yes it was a "flashlight" lol!!!

will check out your blog

thanks

Lorna

[metphan]

Hiya,

For me, it was seeing 2 neurologists that were recommented to me by my GP. I was sent to 2 sleep studies where they couldn't answer anything for me...and we are talking 2 of the best in the US. Through MRI, fMRI and fMRA and EEG sleep exams, I baffled doctors. They think it might be due to my migraines, who knows.

As it is, I'm stuck on a controlled overdose by my neurologist of Temazepam (Restoril) or I simply wont sleep 5 minutes. The dose im on is enough to put an elephant down for about 4-6 hours yet can keep me up for the entire day...

yawn.

Steve

[storm68]

I am glad you found this site. Print out info about DSPS. sounds like you may have it or circadium rythym disorder. I printed out the symptoms etc. and purchased the book "Sleep Disorders for Dummies". I showed these materials to friends, family and my sons doctors to show this is what we have been dealing with for 2 years. My son is 13. And from what i have read on this forum -- you don't grow out of it, it is usually a life long disorder. A man in his fifties actually retired early and received disablility because he had DSPS. It is for real and it is NO fun to live with, but as i tell my son, it could be worse. So read, search and print it out and prove your case. Then try different treatments until you find what helps you. Good luck!!!!!!!!!!

[Norway]

Hi Storm68,

It's so good when parents take their kids seriously and fight for them. We who have had DSPS since we were little, have it all our lives as far as I know. But only 0.15% of all adults have it, equally many men as women.

There's a teen version which often does go away. Most sources say that 7% of teens have DSPS, mostly boys, and I've seen estimates as high as 10%. Obviously most of them do outgrow it. Your son can't count on it, but there's a good chance.