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Old 11-17-2008, 09:24 AM   #1
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delayed sleep phase syndrome?

Hi guys,

I was diagnosed with delayed sleep phase syndrome a two years ago, after many years of not understanding why I always felt so awful-- and after two years of people just thinking I was lazy. I am 23 now and in graduate school; I was 21 when I was diagnosed, so I suppose some people thought my problem was the student lifestyle, when it wasn't.

I've always had sleeping trouble. My parents tell stories about when I was two years old and, long after they had fallen asleep on the couch, I would be sitting in front of the TV happily watching Sesame Street. Sometimes I did this until 2 or 3 AM. I have memories of going to kindergarten without having slept all night. In high school, it got particularly bad. I had to get up at 6, but most nights I couldn't fall asleep until 1 or 2, if not later. I still did well, but not as well as I could have. I was always tired, mentally and physically, and I think my mental well-being suffered from it. College only made the problem worse, and I found that trying to balance 5 classes and 12 hours of work study was enough to run me into the ground. I would sleep in the afternoon/evening and sometimes be up all night, but not because I wanted to-- I would feel awful all night. On weekends, I would sleep 12, 13, 14 hours, but nothing would help. When I could follow my own schedule (i.e. during breaks), I would be awake until 10 AM and then sleep all afternoon/evening. It was awful--not only could I not do anything during the day, I was still tired even after all that sleep!

There was a time, also, when I would go to class in the morning and then sleep in the early afternoon, and then wake up around midnight, eat 'breakfast,' and start the day. My schedule would change from day to day, and sometime it would seem to cycle-- at one point, I would be on the above schedule, but a few days later, I would be going to sleep at a normal time. To be honest, I think I have non-24 hour sleep/wake cycle in addition to DSPS, but I've never had cause to be diagnosed with that also.

Either way, being told I had an actual medical condition was a godsend. I took Ambien for a couple of weeks, just so I would sleep, but it made me terribly groggy and I hallucinated a few times. I now take Rozerem (have taken it for two years), have a light box that I use every morning, and thanks to some basic chronotherapy, I can often get to sleep as early as midnight. I wake up at 9. I work part-time (20/wk), all in the afternoon, and go to school in the evenings. After a few months of the sleep treatment, my blood pressure dropped and I no longer had to take medication for it. I lost almost fifty pounds without trying. I have had more energy, though not much, and I try to get a little more exercise and eat well, to keep the weight off and stay healthy.

The 'feeling great' stage lasted for a few months. Now I am starting to slide back downhill again. I never feel rested and often I feel worse after I sleep. I feel groggy all the time. I get mentally fuzzy by the early afternoon and sometimes I feel as if I could go to sleep around seven, when my classes start. I have been having trouble exercising (just walking) because I am so tired. I'm gaining some of the weight back. I have been forgetting things. I have a headache all the time-- low-grade or worse-- my back, neck, and shoulders always hurt. I am struggling with my current workload, and I am terrified that a 'normal' work week would be too much for me. What will I do when I graduate and enter the real world?

The weird thing is that, though all this is getting worse, nothing has changed. I still go to bed around midnight (sometimes one, sometimes eleven). I still wake up at 9 or 9:30. 10:30 when I oversleep, but never later. That's nine hours of sleep consistently. I shouldn't feel as if I am sleeping less and less.

I am going back to my sleep specialist, but I couldn't get an appointment before early January.

I am sort of wondering, though, if I don't have something else along with dsps. I had a sleep study, but apparently it wasn't that notable.

Here was my basic info:

Stage 1: 14 minutes, or 3.3% total sleep time
Stage 2: 321.5 minutes, or 76.3%
Stage 3: 5.5 minutes, or 1.3%
Stage 4: 0
REM: 80 minutes, or 19.1%.

I only spent 5 minutes in Stage 3-4 sleep. I don't know if that is significant-- my doctor didn't seem to think was important. It doesn't seem like a lot to me. I know stage 3 can decrease with age, but I was only 21 when I had this done.

No PLMS. I had hypopneas, but no apneas of either kind. My AHI was 4.4/hr--31 in all, lasting from 24 to 91 seconds. During REM sleep, the AHI went up to 8.9 per hour. I know that 8.9 is still pretty low, but... it can't be good to be breathing so shallowly for a full minute and a half, can it? I don't know.

The test also found what the doctor called "an alpha-delta wave anomaly," which I guess is an alpha-wave intrusion? The doctor said that was nothing to be worried about, because he didn't think I had fibromyalgia or depression. But I guess that could be the cause of unrefreshing sleep.

I guess I just wanted input from people who understand what I'm going through. I'm only 23 and I feel like I should be wide-awake and excited for life, not bone-tired and afraid I might stop being able to cope at any moment. I feel like I walk around half-asleep all the time. I've made a lot of progress so far, and I don't want that progress to be undone, especially when I am doing my best to keep to my schedule and take care of myself. I'm just so sick of feeling like this.

Any thoughts? Advice?

Last edited by fallofsparrow; 11-17-2008 at 09:50 AM.

 
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Old 11-17-2008, 05:54 PM   #2
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bethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB User
Re: delayed sleep phase syndrome?

Some thoughts, though they may sound somewhat "radical"

We've recently had some posts with unusual sleep disorder problems...although "diagnosed" as sleep problems, they don't fit the typical diagnosis/treatment. In several of these cases, other symptoms appeared before/during/after the sleep problems...and in most cases, few reasons could be found to explain the symptoms, despite many tests being done.

IF you and your doctors have considered everything you can possibly think of, and still have no answers, you might want to consider Lyme Disease which is an epidemic many states. Lyme is difficult to diagnose so most patients suggest seeing a Lyme Limited Medical Doctor.

Bethsheba

 
Old 11-17-2008, 07:59 PM   #3
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Re: delayed sleep phase syndrome?

Your sleep study numbers are fairly close to mine. I was diagnosed
with hypopnea rather than apnea. I had zero percent stage 3/4 and
about 25 percent REM. Seems I did a lot of kicking but not of the
restless legs syndrome sort. My MD advised me that low iron often
accounts for that sort of sleep arousal. Just had my blood drawn
today for ferritin level.
My main symptom has been excessive daytime sleepiness and
grogginess which is said to result from no really deep sleep during
the night. Your overall sleep erratic pattern is quite different than
my falling asleep within ten minutes of hitting the sack however.
But I just wanted to say that your numbers are far from desirable.
I recommend you read a good book like William Dement's "The
Promise of Sleep". He pioneered sleep medicine decades ago and
this book is easily understandable. Reading it will enable you to
see through and think beyond the knowledge level to which you
are being treated with. These days you've gotta find your own way
all too often.

 
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Old 04-20-2011, 02:24 PM   #4
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Re: delayed sleep phase syndrome?

I agree with Lalo mate, Sometimes you have to find the answers yourself, these doctors etc.. Who are they to you? Do they care for you? Do they love you? Do they have the passion to the find the cures for your pains? Most importantly, always get a second opinion. Doctors, even specialist aren't always right you know!. We are all human man. Remember that. - Fellow Dspser

Last edited by georgeofthejung; 04-20-2011 at 02:24 PM.

 
Old 06-03-2011, 02:43 PM   #5
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annie HB User
Re: delayed sleep phase syndrome?

Hi,

I understand. I have DSPS also and have had it all my life. I just found out it had a name and was a real phenomenon.

When I started to read your story it sounded eerily familiar. I, too, hated to go to bed. I'd 'read' comic books (I'm old) under the covers with a flashlight when I was 3.

In HS and college I did my best studying, writing, etc., after midnight. I might have made it to the end of calculus had it not been at 8 a.m. six (yep, 6) days a week.

I've never felt I needed as much sleep as is recommended, so when I was teaching and raising young children I survived. (So did they.) I thrived in my second career - unmentionable - 4-12 shift. Slept from 2 to 10 a.m.. (On the rare day-shifts I worked, it's a wonder I didn't kill someone.)

That's where the similarity stops. I have a regular, if inconvenient, circadian rhythm. I love morning naps - just back in bed to wake up slowly. I don't really need to nap during the day and I'm not usually sleepy - until 2 a.m., and it still takes an extra hour or so to actually go to sleep.

My best hours are socially incompatible, even among my retired friends. I thought at my age it shouldn't matter if I played on the computer or read half the night.

I've been researching the use of melatonin and in doing so I found sites at NIH/NLB which also have information on circadian disturbances. You might find help there. Wish I could be of more help than just commiserating. The other thing is making sure your thyroid is truly functioning - not just keeping TSH low. Check out the thyroid board for more information about that. It's a new issue for me and I'm very impressed with the help offered there.

Hugs, Anne

Last edited by annie; 06-03-2011 at 03:33 PM. Reason: improper reference, improved meaning

 
Old 06-06-2011, 06:32 AM   #6
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Smile Re: delayed sleep phase syndrome?

Quote:
Originally Posted by annie View Post
Hi,

I understand. I have DSPS also and have had it all my life. I just found out it had a name and was a real phenomenon.

When I started to read your story it sounded eerily familiar. I, too, hated to go to bed. I'd 'read' comic books (I'm old) under the covers with a flashlight when I was 3.

In HS and college I did my best studying, writing, etc., after midnight. I might have made it to the end of calculus had it not been at 8 a.m. six (yep, 6) days a week.

I've never felt I needed as much sleep as is recommended, so when I was teaching and raising young children I survived. (So did they.) I thrived in my second career - unmentionable - 4-12 shift. Slept from 2 to 10 a.m.. (On the rare day-shifts I worked, it's a wonder I didn't kill someone.)

That's where the similarity stops. I have a regular, if inconvenient, circadian rhythm. I love morning naps - just back in bed to wake up slowly. I don't really need to nap during the day and I'm not usually sleepy - until 2 a.m., and it still takes an extra hour or so to actually go to sleep.

My best hours are socially incompatible, even among my retired friends. I thought at my age it shouldn't matter if I played on the computer or read half the night.

I've been researching the use of melatonin and in doing so I found sites at NIH/NLB which also have information on circadian disturbances. You might find help there. Wish I could be of more help than just commiserating. The other thing is making sure your thyroid is truly functioning - not just keeping TSH low. Check out the thyroid board for more information about that. It's a new issue for me and I'm very impressed with the help offered there.

Hugs, Anne
hi anne, thanks for the thyroid tip. good luck with your future sleepings
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