Delayed sleep phase disorder

I am interested to know if any of you suffer from DSPD. I am at my perkiest in the early hours of the morning and my deepest sleep is at about 7 a.m. onwards. I have tried staying awake right throught till the next night but still, I don't sleep till 2-3 a.m.
What are your thoughts?
Cheers!

Posted 23 Feb 2012 at 3:20 PM
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  • Sleepio Member

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    Hi nocturne as you as of yet have not had a reply from Circadian yet , I can confirm I had appointment here in west sussex to be reffererd to a sleep clinic. I am sure Circadian will tell you his county as soon as he reads your post, in my opinion its a bit of a postcode lottery and if you have a sympathetic GP.

    Good luck on getting a refferal and getting some answers to your particular sleep prblem

  • Sleepio Member

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    Nocturne, I live in the west of Scotland. My referral has come in a very roundabout way. My GP wouldn't prescribe Melatonin so she sent me to my local hospital. The consultant there had no experience of sleep problems so I went on my merry way, thinking that was the end of it. This consultant must have done a bit of investigating and through this, I have been referred to a hospital in Dundee, miles from me but I don't care! I will be happy to travel. So, it must be possible to be referred to places outwith your own county. I'm assuming you're in England.
    My sleep pattern has been up and down, usually 2 am to circa 9- 10 am but the past 3 nights have been back to my old ways….4 am to 12 noon. I say to myself, I am GOING to get up with the alarm but this has failed me…sigh! Like you, I have stayed up 24 hrs in the hope I'll be so exhausted I'll sleep early. No such luck! Just makes me feel ill.
    My GP gave me 7 zopiclone in Jan 2011. I have 2 left and I'm sorely tempted to take one but, in my experience, Zopiclone does NOT help you to sleep any earlier…waste of time.
    I can hear the desperation in your “voice” and I totally understand. I get mad at myself for “allowing” this to happen but there is a word….acceptance…...which helps cushion those feelings. I don't know whether that's a cop out or not :)
    I believe a GP has a duty of care for your well being and admittedly it can be like hitting your head on a brick wall. Search the internet for a reputable sleep expert and ask your GP(or another GP in the practice) to be referred to him/her. Maybe not dwell on DSPS to the GP …just long standing sleep problem rolls eyes. That's me being cynical.
    I have no idea what the consultant will say to me but I'm ever hopeful.
    P.S. Andy….I'm female teehee

  • Sleepio Member

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    sorry for my confusion boo hoo, in my experience most GP's are purely not interested if you have a sleep problem, mostly there answer is medication, i get zopis quite frquently for me in general they work howeverI get unrefreshed sleep due to my fibro.

    I was wondering maam :-) does the long summers and short winters in scotland have any effect on your sleep
    ps my family originated in Aberdeenshire…..good luck to you and Nocturne getting answers to your DSPS questions…...Andy…obviously a male :-)

  • Sleepio Member

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    Andy…..Sir, I have not noticed any difference between summer and winter for my sleep. You'd think I would….bright sunshine (which it is today)...up and at 'em!!

    I have decided to change my “wake-up” alarms. I have 5 set and didn't hear any one of them this morning..(.sigh) and I didn't even hear the phone ringing (right beside my bed). Anyway, I feel that the settings I had for alarms were unrealistic…set too early (I would be in deep sleep) so….with that in mind, I am going to start with a later time and then gradually decrease by a half hour to hopefully become aware of the alarm(s) and get sleep back into sync.
    It's so strange….a couple or so weeks ago…I was rising with the early alarms…felt good about my improving pattern. It just takes a few broken boundaries (late nights) to go back to square one.
    Thanks for your interest Andy, kind Sir :-)

  • Sleepio Member

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    Just to chime in on the roundabout referral thread….

    I live in Wales and have never been directly referred to a sleep clinic but ended up at one anyway. I have chronic problems with allergies, rhinits and nose bleeds. I asked my GP to refer me to ENT but specifically back to an English hospital where I had had ENT surgery in the past.

    Whilst at ENT clinic and trying to explain my difficulties I told them about my awful snoring. This combined with feeling tired all the time set alarm bells ringing for Obstructive Sleep Apnoea. ENT arranged overnight pulse-oximetry (at home).

    I went to clinic a few months later for the results and was told by a Registrar that I had “severe OSA and must stop driving immediately and inform the DVLA. I will refer you to the sleep clinic for CPAP”. I went home (by taxi) and dutifully informed the DVLA etc. 2 days later I got a phone call from the doctor apologise g he has misread the results and the test was normal! (try explaining that to the DVLA!) but as my sleepiness was so severe he said he would refer me to the sleep clinic anyway.

    A few months later I got called to a hospital in a third County for a sleep study (measuring respiratory and restless legs parameters only). The study was from 9pm – 6am, I slept 3am-5:15am and as I went to the loo at 5:15 the tech said as I was awake she would disconnect me. The telephone results later that day was “no evidence of OSA but inconclusive as so little time asleep).

    A year later I still hadn't had a clinic apt so ENT gave them a poke for me. I was seen in clinic where it was obvious that the service is almost exclusively for OSA – it is part of the respiratory clinic.
    I told the consultant my story and he was going to discharge me saying not OSA, probably just due to my medical conditions, live with it. He then offered a full polysomnography sleep study (saying he thought it would be normal).

    I had the sleep study in March and go back on 30th May for the results. I went to bed at 10pm and was woken at 7am this time (I had pointed out that with a natural sleep window of 3am – noon it was silly to stop the first study at 5:15am. At that time the sleep unit became the respiratory unit at 7am so 1 tech had to get everyone up and strip and clean all the beds by 6:45am!!).

    I think I slept okish this time, I had had only 3 hrs sleep the previous night, turn worked a full day and made an hours dash from work to the hospital. I think I dozed / was mostly awake until the early hours then slept for a few hours.

    If I'm still on sleepio when I get the results I'll let you know.

    Enfys
    (female, early 30s)

  • Sleepio Member

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    Please do keep us informed. It just shows you that even people who work in the NHS have to jump through hoops to find a resolution.
    The twinning of the sleep unit and the respiratory unit seems counter productive and the Tech guy was following rules!!!! Rules is rules…mustn't bend them for anything out of the ordinary. The mind boggles!

  • Sleepio Member

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    Thanks guys for all the responses. I knew that sleep clinics mainly focussed on connected respiratory problems like sleep apnoea, and I suppose for funding reasons those are considered more urgent as life-threatening. With the ME, I have had some relief from treating the symptoms, but have persisted in trying to get a diagnosis as I feel slightly odd/arrogant saying I have ME/dspd as a layperson. However ME experts whose articles/books I've read say that self-diagnosis is usually pretty accurate because as patients we are a group of very well-read, clued up people(I include insomniacs in that). I agree that sleeping pills may work sometimes for some people, but most people don't find them a long term solution and then you're back where you started but with withdrawal symptoms. Originally I thought melatonin would be the answer but also stops being effective after a while and there are side effects. I also know someone who tried it and it had no effect. I too would not mind travelling if I could be reasonably sure of a decent reception. At this point even if there is no cure/help I would like to have one last go at getting a diagnosis, then accept the situation, get herbal help for some ME symptoms, go back to being self employed doing something which I can do in the night, and simply explain to the rest of the world that I'm contactable afternoons and evenings (or in the night) but not mornings. And just make the best of it.

  • Sleepio Member

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    Thanks for sharing this nocturne – there are quite a few people dealing with other illnesses as you know from your visit to that discussion thread. Not sure I can be of any real help here other than to encourage you to find the mixture of Sleepio and other techniques and other ways of living that will be the best for you.

  • Sleepio Member

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    Hi, I just thought I'd update to let you know I haven't forgotten to post my sleep study results – I haven't had them yet. Unfortunately the hospital keep writing to cancel my appointment and sending a new date then 4 weeks later they cancel again. I think my “current” appointment is sometime in September.

  • Sleepio Member

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    Session 4

    I was diagnosted by asleep doctor as being delayed phase sleep syndromm, I have taken Ambien[zplidiem[ for years.

  • Sleepio Member

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    Graduate

    Hi, I'm a newbie here. I just started sleepio two days ago and I'm realizing it focuses more on sleep quality rather than changing the circadian rhythm I have gotten into. I am sleeping reasonably well but I range from (at best) 2am to 12 noon or at worst 4 – 5:30am to mid-late afternoon. I really hoped this program would help me change my schedule.

    Do any of you find that sleepio has some decent benefits for people like us or is this mainly for those who can't sleep solidly? Since they only reveal info. week to week how can I trust that I will receive some real benefits from this program?

    Thanks

  • Sleepio Member

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    Good morning Tinkerbell Jane. Sleepio can help people with various forms of sleeping woes. The course is progressive and week by week will deal with different aspects of sleeping. Circadian rhythms are talked about and suggestions given. If you haven't already you can type this topic or others in the search and articles will be shown. I encourage you to take the course step by step, fill in your daily diary (the prof will need this info for later) and try out the suggestions each week. The course does take time and can get hard later on but it is worth it. As you check out the various articles in the library and follow the various community chats and expert forums, you will see that Sleepio has helped many people with a variety of problems. Good luck!

  • Sleepio Member

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    Thanks for the reply. It's such an old thread I wonder if anyone else is current dealing with this. I am posting to the weekly chat doctor about it so maybe she will have more pointers. :)

  • Sleepio Member

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    Hi Igraine,

    I don't have children, I'm not working and I'm 50. I understand when it gets bad enough that you are sleeping the day away. I also am finding it a bit hard to give up the quietness of the nighttime as you mentioned. I am trying to quiet things down earlier and do enjoyable things in the early and later evenings rather than the middle of the night.

    I do not have the blocks of sleep, awake for several hours and sleep again that you have.

    I definitely think the program can help you. You will find instructions (week 2 or 3) for a technique on how to close up the big chunk of hours you are awake in between sleep sessions.

    Changing your time back into the norm is a bit more of a do it yourself thing. One of the doctors suggested I move my “go to bed and get up time” back by 15 minutes every other day.

    I don't know what to tell you about not waking with the alarm. Post a question on your own profile and it will show up on the running headlines of the community page. Everyone will see it there. Mention your main topic (can't wake to alarm) in the first sentence and it will draw attention. I know I read one thread about all kinds of super alarms for people who can't wake.

    When you post on a thread like this one (which isn't that popular) you won't get many views. I think the graduates check all new comments but the rest of us don't. I only knew your comment was here because I get e-mail alerts if someone replies after my posts.

    I do think you will get a lot out of this program. It will take some hard work.

    Best wishes

  • Sleepio Member

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    Graduate

    Oh a few more things. I am using my light box every morning with breakfast for about a half hour. I live where it's dark and rainy in the winter. I am getting out for walks during the daytime even if it's overcast since there is some natural light outside – more than in my home. Both light and food tell the body it is wake up time.

    I've typed up a schedule from the sessions here – I keep tweaking it every week – and I look at it several times during the day to keep myself on track. Active stuff early, calmer things in the evenings. It's easy to slip into a bad pattern when you do not have to be somewhere.

    As you are able to improve your schedule, have you thought of doing some volunteer work you think you would enjoy so that you have something to look forward to and get out of the house?

  • Sleepio Member

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    In the US, I can just buy Melatonin over the counter. Personally, I think it's pretty worthless. I've tried 2mg, 5mg, and 10mg. Sometimes I took 20mg.

    It sort of works, but it's not like diphenhydramine or anything that's super noticeable. (it's in sleeping pills over there, in the US it's in our benadryl!)

    If I take it for an extended period of time, (and I've had this happen twice with Melatonin) I start waking up after 5 or 6 hours of sleep. It's bizarre, I wonder if my body stops producing the hormone because of the abundance I'm taking in…like homeostasis sort of thing.

  • Sleepio Member

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    Graduate

    This is my worst problem. Have ME and just can't get into a 'normal' time of going to bed and getting up at a civilised hour. Hate it. Worse in Winter too.

  • Sleepio Member

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    Session 3

    Hi…. I'm karajaal and signed up a few days ago. I know this is an old thread but is seems relevant. I just read this whole thread and felt some relief that there are many things I can relate to. I first had insomnia about 20 years ago when I has ME. The insomnia recently returned.

    About 11pm I start to wake up and then virtually nothing will get me to sleep. Round about 7am I will drift off into the deepest sleep and I will sleep through most alarms and if I do wake I will get out of bed and reset the alarm. On the other hand if I stay awake and don't sleep at all I will stay alert and go to work.

    I've tried hypnosis, self hypnosis, acupuncture, guided visual relaxation, meditation and the instruction sheet on “Sleep Hygiene” my GP gave me. I'm hoping sleepio will work. Oh yes also tried bright light. All to no avail.

    Anyway I do feel like I'm with people here who understand whats happening

    KJ

  • Sleepio Member

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    Graduate

    Yes this sounds just like me. My sleep specialist said that its likely i have this disorder. He refers to me as having self-imposed insomnia. Years and years of finding it difficult to go to bed before midnight. Over the past few years it has gotten worse and I commonly don't go to bed until after two and then I have to force myself to… or I fall asleep at my chair. It is 3.10am as I speak and I have to be up at 6am. On these days when i have to be up early my fatigue and concentration is not good, and I risk falling asleep while driving and quite often I will fall asleep as soon as i stop my car. This is worse after I have done this two days running which regularly happens with my schedule. I heard about this program from a colleague and hope that i can stick with it. I have just signed up tonight.

  • Sleepio Member

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    Session 2

    I just found an article about that very subject and the description fits me all the way around! I took it with me last week to my neurologist, and he told me he worked with the Doctor who wrote the article. I've spent my whole life going to bed late or trying to go earlier, only to wake up after an hour or two and then be awake for two or three hours till the sun comes up. I have no trouble sleeping till noon or after. One day last week I slept till 2:00 pm! After seven or eight hours I still feel sleepy and physically exhausted. Guess I'm not getting quality sleep. I take a med for Restless Legs Syndrome (which just began a few months ago}, a pill for sleep (I've tried numerous others which either didn't work or caused hallucinations}, but this one seems to help. And I take one Hydrocodone Actametaphin 10-325 before bed to help calm me down and keep me from waking with the pain of osteo arthritis and previous surgeries. I can't go to sleep earlier, but I can sleep around the time the sun comes up. I'm having a CPAP machine delivered to my home tomorrow. I've been told I have only mild sleep apnea (stop breathing around 8 times every hour}, but my oxygen level drops to 83, so hopefully the extra oxygen will help my sleep. The bad news is, my doctor confirmed that there isn't much that can be done about my delayed sleep disorder. Once a night owl, always a night owl. I just have to accept and adapt. Thankfully, I am finally retired, so sleeping during the day isn't as bad as when I was working on only a few hours sleep and taking naps at lunch time in my car. If I have to be up early to go someplace or do something special, I do it on just a few hours sleep or no sleep and then take a nap later in the afternoon or early evening. I'm hoping this Sleepio study will help with sleep quality. It's my last resort!

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