Delayed Sleep Phase Syndrome

By Anonymous Latest Activity August 15, 2010 at 4:06 am Views 2,824 Replies 16 Likes 4

Anonymous

Hi
Im new to the site I have Delayed Sleep Phase Syndrome. Just wanted to talk to others I'm kinda having a hard time accepting there is no cure and that the treatments are somewhat useless I'm trying really hard to get past it but now I know why Im so tired all day I badly want to fix it. Society looks down on me for not sleeping their hours and I have lost a friend to my diagnosis she says she doesn't believe in it and it is just a way for me to get away with sleeping whenever I want and I should be assimilating to society and not the other way around. I have been living like this since I was 12 I wasn't partying all night or staying up all night for the fun of it in fact my mum would have all us kids in bed by 7:30pm OR ELSE. Reading the info on the net its as if the writers are saying its the individuals fault for having late nights. I find it hard to believe I caused my circadian rhythm to shift on my own. Ive had people even doctors tell me "just go to bed earlier" they don't believe me when I tell them that doesn't work for me. I have tried hard for 20 years doing all the things the doctors, therapists, books, friends and family and anyone else has suggested (I can get pretty much zen when I meditate). I feel like I'm just lazy I cant explain my sleep disorder and when I try I get the same look, the "your just lazy look". It hurts and I thought getting a diagnosis would help but it doesn't. Is there any one who can tell me this is not my fault? I'm blaming myself for it. how do you accept this sort of thing? and how long does it take?

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Replies (16 replies)

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  • POKEY G
    POKEY G February 22, 2011 at 8:46 am   

    The most important thing is this, if you are not sleeping, get up and do something for a while then try to return to bed. As long as you are not falling asleep a work or driving, you are getting enough sleep, that is according to my Dr.. Once I accepted this idea, I seemed to sleep better when I do sleep. Don't be afair to go to bed and if sleep doesn't come, do something else; i.e. read, whatch tv, etc.. Try not to do or watch anything too stimulating. I hope this helps.

  • Phonse
    Phonse October 23, 2010 at 2:05 pm   

    The first thing you MUST understand is that you have NOT been given a death sentence! Treatments are not only effective, but are improving all of the time. I know it scares you, it scared me too. At first I was afraid to go to bed!

  • slbntenn
    slbntenn October 13, 2010 at 11:51 am   

    Hi…You are not crazy!!! My mother never slept well at night. My son, since birth, does not sleep well at night. I told him to always keep a night shift job for this reason lol I worried about him in school of course, but otherwise, I never approached this as a problem. It is just his way and that's good enough. We have to have people on duty around the clock so perhaps some of us have evolved instead of fighting those odd hours lol. You do not have to conform to anyone! You are different for a reason, better to cover those windows, darken your space sleep well on your own schedule and find out what you should be doing with your different schedule and be very successful in your life. btw, my son is 30, recently medically retired sergeant in the army after a tour in Iraq. He is currently in school for paramedic training. He still keeps odd hours lol

  • Phonse
    Phonse October 23, 2010 at 2:08 pm   

    It should be remembered that if an "event" gonna happen, it makes no difference when you sleep!

  • caraelena
    caraelena September 3, 2010 at 5:31 pm   

    I know exactly what you mean. Especially the part about losing a friend. Everyone I know cant believe I "sleep" so much. No one understands 12 hours in bed equals only eight hours of sleep or less. I'm almost 40 years old I've never been married and have trouble with serious relationships because of my insommnia. FRom what I understand we cant control our individual circadian rhythym from the time we go to sleep. It is something driven by our bodies response to the rise and set of the sun and a bunch of other factors. Dont waste your time blaming yourself, just make sure you are doing everything to help yourself. I think being proactive can be the best cure for the guilt. thanks for your story. I feels good to know I'm not hte only one who has gone through this.

  • RandyV
    RandyV August 29, 2010 at 3:54 pm   

    I also suffer Severe OSA (118 episodes per hour). I can relate to the DSPS, as I have that as well. I cannot help but think the two are related. I have had a polysonogram (sleep study), and have been told that even with CPAP therapy, I NEVER reach REM sleep, and that stages 1-3 are insufficient. I have trouble falling asleep, but now take Ambian to help with that.

    I still have a VERY hard time awaking, and my sleep habits are anything but regular. I awake oxygen deprived, and it takes me a couple of hours to get moving, and functioning "normally." This has been the case all my life.

    I also have experienced social discrimination for having irregular sleep patterns. It affected going to school when I was younger, and has influenced my work as well. I found that I was best to work night jobs, allowing me plenty of time to fall asleep, and then awake fully before trying to go back to work. I have never been a "morning" person, and have had many people, including teachers, friends, and employers, give me grief over my inability to get up in the morning. I have had the labels of, lazy, unmotivated, unfocused, etc applied to me. I simply ignore them, and those who are too ignorant to understand my medical conditions. Chronic fatigue is probably the worst effect I suffer, and I sympathize with anyone else who suffers these conditions.

  • dwcasey
    dwcasey August 23, 2010 at 9:35 am   

    I know how you feel. Been there, done that.
    The ones who call you lazy or who looks down at you are just ignorant to your Delayed Sleep Phase Syndrome and needs to be educated. There really isn't anything you can do except print out the information on this disorder and try to get those around you to read, giving them a better understanding of your disorder.
    Why won't your doctor put you on something to help you sleep? There are so many meds out there now to help people with sleep disorders so no one should have to suffer day after day (or should I say night after night).

    Hang in there and do not blame yourself. You didn't ask for this.
    Debbie

  • Angilahlah
    Angilahlah August 19, 2010 at 11:56 pm   

    With more education it has become easier to accept also doing the treatment makes me feel that I'm doing something about it at least. I wont ever let anyone say I never tried. It is self acceptance that is the worst to deal with for me. Slowly I feel better about my situation. Ive enjoyed reading the reply posts.

  • Angilahlah
    Angilahlah August 19, 2010 at 11:56 pm   

    With more education it has become easier to accept also doing the treatment makes me feel that I'm doing something about it at least. I wont ever let anyone say I never tried. It is self acceptance that is the worst to deal with for me. Slowly I feel better about my situation. Ive enjoyed reading the reply posts.

  • pjnalty
    pjnalty August 17, 2010 at 2:50 pm   

    I feel for you. It's horribly frustrating and full of undeserved negative stigma. My mom and both my kids have trouble sleeping "normal" hours. I call this the "square peg" syndrome. My oldest had to drop out of high school and finish via home tutoring because of it. It amazes me the stupidity of people. Her principal asked me if I had ever told my daughter what the consequences were if she did not get up and go to school. Well, duh! And my boss has told me to get better sleep hygiene. I'm sure that would help, but when your brain is "on", it's on! People say we have our days and nights mixed up, as though it's a personality flaw tha could just be fixed if we would capitulate! lol
    In all seriousness, the consequences of this syndrome are very serious. I feel like my job is hanging by a thread right now, and my FMLA is about to be up. I finally got ahold of a sleep neuro here, but she is particular about what kind of patients she treats (whatEVER) If she won't see me, I'm back to square one. Oh, I also have OSA and use a CPAP.

    I have another issue. I never knew anything about the delayed phase disorder, I always thought this was circadian, and my Dr. doesn't seem to know anything. So of course I read about it with great interest. Does anyone else get crap from their Dr. when they bring up something they read about online? How else can we ever learn about this stuff, we can't expect Drs to read every single article out there, but I damn sure expect them to show an interest when I bring a copy in for them. They don't have to read it right then, but my Dr. won't even try to look at anything I bring.

  • Bernadine7
    Bernadine7 January 23, 2011 at 11:57 pm   

    Get rid of that ignorant doctor/

  • Tracy
    Tracy August 15, 2010 at 10:58 am   

    Curious to know if you have had an over night sleep study? If so, when was the last time you had one?
    What treatments have you participated in?

    Asking because DSPS sometimes dx as or referred to as sleep onset insomnia - is often a symptom of another sleep disorder. This could be determined by an overnight sleep study/ polysomnogram.

    I have sleep onset insomnia bouts myself, some of my docs call it DSPS. I still have bouts, but find light therapy to be very helpful. I also participated in CBT - cognitive behavioral therapy which was my key to success. 2 CBT sessions was all the training and education I needed to implement and work it out.

    I feel for you, there is nothing worse than having your body clock off kilter! Are you a shift worker? That makes things even harder!

    Tell us more about what treatments you have tried…and that sleep study…when did you last have one?

    tracy

  • richal
    richal August 15, 2010 at 1:00 pm   

    Six months ago. went to sleep study at hospital. wired-up( without CPAP machine).
    re-visit ASAP…was told stop breathing 47times within study.
    with CPAP machine adjusted with air-flow between 5-15psi..doing very well.
    adjusting to sleep mask.
    Thanks for inquiring.
    Rich.

  • daniel velazco
    daniel velazco August 15, 2010 at 6:06 pm   

    My first sleep study was in 1994 and was told I stoped breathing 92 times and was put on C-PAP at tyhat time. Then 1n 2006 I had another sleep study and was put on Bi-PAP. I rerally sleep a lot better with the Bi-PAP. Becasies the machine I am on oxygen 24/7 due to COPD.

  • Angilahlah
    Angilahlah August 17, 2010 at 11:10 am   

    I started on melatonin slow release tabs 15 minutes earlier each night hopeful to reset my CR. I started light therapy a month before my diagnosis which was made at the respiratory sleep disorders clinic (Perth Australia) 6th August this year. No apnea. Ive had this problem since I was 12.

  • Angilahlah
    Angilahlah August 17, 2010 at 11:13 am   

    forgot to add Ive never done shift work

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