Hello,

I'm female, in my mid 20's.  I am normal weight (BMI of 22), and quite active.  I don't snore, smoke, or drink alcohol and I have low blood pressure.  I started having some real problems with daytime sleepiness--falling asleep in the shower, at the table, while doing homework, at work, etc.  I was diagnosed a few years ago with DSPS--I always fall asleep late (regardless of how tired I am) and my most intense periods of sleepiness are before noon. However, I started going from just "feeling sleepy" in the AM to actually falling asleep, and falling asleep in the afternoon and evening as well.  I've always been a vivid dreamer, but the last few months it's really been on overdrive.  

I do have mild allergies that I take claratin and flonase for.

So, a sleep test was ordered.  This is what they found:
Sleep efficiency: 67%
sleep onset time: 118min
REM sleep latency: 89min
stage 1: 2%
stage 2: 82%
Stage 3-4 (slow-wave sleep): 0%
REM: 16%

RDI: 11.6
AHI: 0
RDI during REM sleep: 17.5 per hour
RDI while supine was 9 per hour
Max waking oxygen saturation: 100%
averate SaO2 in sleep: 97%
Minimum during sleep was 95%
Tracheal mic revealed no frequent snoring
Spontaneous arousals averaged 7 per hour
periodic limb movements averaged 0 per hour
prolonged cardiac rhythm monitoring was unremarkable

The Dr diagnosed it as "sleep apnea".
However the tech was confused how it could be sleep apnea when my AHI is 0, and my oxygen saturation is good.  The tech thought it might be UARS instead.

I've been diligently using the CPAP machine for 2 months (it has a good fit, I feel fairly comfortable with it, etc--I'm a back/side sleeper so there was no big adjustment to make) but there's been 0 improvement.  I still wake up quite a bit at night, and my dreams are as intense as ever (i assume this is because I'm waking up in the middle of them).  I'm still having problems with daytime sleepiness...the Dr finally consented to allowing me ritalin, but only in the AM.

Any suggestions??  Is it really "apnea"??  Is there anyone that has used cpap/dental brace (which I cannot afford, and really don't want to use even if I could--having spent lots of $$ with braces as a teen) and still seen no improvement in feeling rested?  I'm not concerned about any other aspect other than feeling rested--it seems like my body is getting plenty of oxygen.  It looks like the main problem is just that I wake up a lot?

I do tend to be a bit of an anxious person.  I "sigh" a lot when I'm awake.  I don't know how to describe it other than I feel like I need to take a deep breath periodically, even when I'm awake.  Could I be doing the same thing in my sleep?  The sleep Dr won't prescribe anything for anxiety because she says that it tends to make muscles slack and it will "collapse my airway further".

Any insights, suggestions, etc would be REALLY welcome.

Quote:

I was diagnosed a few years ago with DSPS--I always fall asleep late (regardless of how tired I am) and my most intense periods of sleepiness are before noon.

What treatment are you having for your DSPS ?

Quote:

However, I started going from just "feeling sleepy" in the AM to actually falling asleep, and falling asleep in the afternoon and evening as well.  I've always been a vivid dreamer, but the last few months it's really been on overdrive.  

I do have mild allergies that I take claratin and flonase for.

So, a sleep test was ordered.  This is what they found:
Sleep efficiency: 67%
sleep onset time: 118min
REM sleep latency: 89min

A sleep test doesn't lend itself to a good sleep efficiency.
Your sleep onset time is quite extended............might there be any link between this and your DSPS ?
Your REM latency is about normal.

Quote:

stage 1: 2%
stage 2: 82%
Stage 3-4 (slow-wave sleep): 0%
REM: 16%

Your sleep architecture is out of kilter.
Extended period in Stage N2 (usual is 55%)
No Stage N3 (3-4)......lack of this type of deep/restful/restorative sleep usually leads to Excessive Daytime Sleepiness.
REM Sleep is slightly below 'normal'.

Quote:

RDI: 11.6
AHI: 0
RDI during REM sleep: 17.5 per hour
RDI while supine was 9 per hour
Max waking oxygen saturation: 100%
averate SaO2 in sleep: 97%
Minimum during sleep was 95%
Tracheal mic revealed no frequent snoring
Spontaneous arousals averaged 7 per hour
periodic limb movements averaged 0 per hour
prolonged cardiac rhythm monitoring was unremarkable

Has your sleep doctor discussed the possible causes of your RDI's ?
Your O2 sats are OK.
There is little point in making guesses at these figures. Your sleep doctor should explain them in detail.

Quote:

The Dr diagnosed it as "sleep apnea".
However the tech was confused how it could be sleep apnea when my AHI is 0, and my oxygen saturation is good.  The tech thought it might be UARS instead.

UARS is difficult to diagnose.........however with satisfactory O2 sats and no AHI.........???

Quote:

I've been diligently using the CPAP machine for 2 months (it has a good fit, I feel fairly comfortable with it, etc--I'm a back/side sleeper so there was no big adjustment to make) but there's been 0 improvement.  I still wake up quite a bit at night, and my dreams are as intense as ever (i assume this is because I'm waking up in the middle of them).  I'm still having problems with daytime sleepiness...the Dr finally consented to allowing me ritalin, but only in the AM.

Any suggestions??  Is it really "apnea"??  Is there anyone that has used cpap/dental brace (which I cannot afford, and really don't want to use even if I could--having spent lots of $$ with braces as a teen) and still seen no improvement in feeling rested?  I'm not concerned about any other aspect other than feeling rested--it seems like my body is getting plenty of oxygen.  It looks like the main problem is just that I wake up a lot?

I do tend to be a bit of an anxious person.  I "sigh" a lot when I'm awake.  I don't know how to describe it other than I feel like I need to take a deep breath periodically, even when I'm awake.  Could I be doing the same thing in my sleep?  The sleep Dr won't prescribe anything for anxiety because she says that it tends to make muscles slack and it will "collapse my airway further".

Any insights, suggestions, etc would be REALLY welcome.

Can we go back to your DSPS...........is this being treated ?
Your sleep architecture is not right. It is strange that you get no Stage N3, yet you do get close to normal REM Sleep.......as long as this continues you will be tired (exhausted) during the day.....

Please post some detail on the DSPS ?

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

mutantfrog wrote:

The Dr diagnosed it as "sleep apnea".
However the tech was confused how it could be sleep apnea when my AHI is 0, and my oxygen saturation is good.  The tech thought it might be UARS instead.

This.

It is UARS, which is indicated by:

RDI: 11.6
AHI: 0
RDI during REM sleep: 17.5 per hour
RDI while supine was 9 per hour

--

It may sound simple, but you could always try breathe right strips or there is an alternate product that you can PM me about. I believe that moderators here will edit the post if I put in the product title, but ill try NOSOVENT.

One thing is certain, it surely isnt sleep apnea, however UARS can bring with it very similar signs and symptoms.

Hey Daniel,

Thanks so much for taking the time to look at my question.  I'll try to answer your questions in as much detail as possible:

I am currently being treated for DSPS.  I've tried various forms of chronotherapy with no lasting success.  I also went the CB Therapy route, thinking it was possibly just insomnia, but no success there either.  I've also tried brightlight exposure (both using sunlamps and regular sunshine) at different times, and melatonin at different times (some Dr feel that it should be taken in a very small dose in the afternoon, some say it should be taken right before bed).  I've tried avoiding brightlight in the afternoon/evening and avoiding "stimulating activities" in the evening.  I've also tried just adhering to a strict wake up/sleep schedule.  I've tried all of these things either by themselves or in some combination.

Nothing has worked.

I do of course practice good sleep hygiene: no caffeine, exercise only in the morning, relaxing activities in the afternoon, bed is only for sleeping/sex, and when I can't sleep after trying for 30min, I get up and read in a different room for a little bit and then come back and try again.  

I'm currently taking 10mg of Ambien at night, and using bright light in the morning.  This is what I've been using for about the last year or so.  It's not fantastically effective but better than nothing.  I've been trying to deal with the DSPS for about 7 years now, with no real success.  My doctor actually said that I should just abandon the idea of sticking with the usual 9-5 schedule--however I'm currently a graduate student; there's no way I'm going to flush all that education down the toilet (most jobs I've found that would allow me to sleep when needed and work in the evening/night are not skilled, with the exception of nursing).  I find the idea of just giving up kind of offensive.  However this is the same doctor that kept maintaining that I'd grow out of DSPS.  I've had many of the symptoms of it since I was a kid--always kind of a "night owl", but it got extremely bad my Sr year of high school and into college.  

I did do a stint (one semester, about 3months) of allowing myself to operate on a "flipped" schedule about a year and a half ago--I still had fairly fragmented sleep, although it wasn't as bad as it is right now.  Even with 10mg of Ambien, I'm aware of waking up at least 3-5 times at night.

I also took 10mg Ambien during the sleep test (I was told it wouldn't impact the results).  I got to the center at 9pm, was set up by about 9:45pm...read my book until about 10:45pm then took 10mg of Ambien and dropped off to sleep.  I felt fairly out of it until about 3am, then I was awake numerous times between 3am and 6am when they stopped the test.  I don't know how that affects the sleep test, or if that was factored into the sleep onset time.  I was told the test didn't "start" until i turned off the light.  However given the sleep onset time, I'm wondering if they included my reading time.  Once I take Ambien I'm usually out in about 30min.

I agree that the sleep architecture is out of whack, and that the wakeups and lack of SWS is probably what is causing the extreme sleepiness during the day.

My sleep doctor is adamant that it is Obstructive Sleep Apnea, and that CPAP will cure me.  She did not go into any detail about possible causes of RDI's.  My tonsils and adenoids are are normal size.  I have a bit of chronic inflammation in my nose from allergies/repeated sinus infections when I was younger, but allergies seem very under control with flonase and claratin.  She thinks it's just the structure of my face that is causing sleep apnea.  Seriously.

As a kid I sometimes had sleepwalking and night terrors...actually all the way up until I was about 23.  I haven't had them in a long time--probably because I'm getting little to no SWS.

Very frustrating that I've been on CPAP 2 months--DILIGENTLY, 100% compliant--and still no improvement.  

Please let me know if you have any more questions or suggestions!  I really appreciate your time

RAM_Sleep wrote:

mutantfrog wrote:

The Dr diagnosed it as "sleep apnea".
However the tech was confused how it could be sleep apnea when my AHI is 0, and my oxygen saturation is good.  The tech thought it might be UARS instead.

This.

It is UARS, which is indicated by:

RDI: 11.6
AHI: 0
RDI during REM sleep: 17.5 per hour
RDI while supine was 9 per hour

RAM_Sleep:

I'm afraid I don't know much about UARS.  Can you tell me more about it, or suggest some reading?  Is the therapy the same as sleep apnea?  What is the difference between UARS and sleep apnea?  Will Cpap eventually be helpful?  If so, how much longer will I be on CPAP before I start feeling better?

Quote:

Hey Daniel,

Thanks so much for taking the time to look at my question.  I'll try to answer your questions in as much detail as possible:

I am currently being treated for DSPS.  I've tried various forms of chronotherapy with no lasting success.  I also went the CB Therapy route, thinking it was possibly just insomnia, but no success there either.  I've also tried brightlight exposure (both using sunlamps and regular sunshine) at different times, and melatonin at different times (some Dr feel that it should be taken in a very small dose in the afternoon, some say it should be taken right before bed).  I've tried avoiding brightlight in the afternoon/evening and avoiding "stimulating activities" in the evening.  I've also tried just adhering to a strict wake up/sleep schedule.  I've tried all of these things either by themselves or in some combination.

I think the standard approach to the DSPS is the light therapy, sleep hygiene and melatonin.

Quote:

Nothing has worked.

I do of course practice good sleep hygiene: no caffeine, exercise only in the morning, relaxing activities in the afternoon, bed is only for sleeping/sex, and when I can't sleep after trying for 30min, I get up and read in a different room for a little bit and then come back and try again.

Just as the text book says (LOL).

Quote:

I'm currently taking 10mg of Ambien at night, and using bright light in the morning.  This is what I've been using for about the last year or so.  It's not fantastically effective but better than nothing.  I've been trying to deal with the DSPS for about 7 years now, with no real success.  My doctor actually said that I should just abandon the idea of sticking with the usual 9-5 schedule--however I'm currently a graduate student; there's no way I'm going to flush all that education down the toilet (most jobs I've found that would allow me to sleep when needed and work in the evening/night are not skilled, with the exception of nursing).  I find the idea of just giving up kind of offensive.  However this is the same doctor that kept maintaining that I'd grow out of DSPS.  I've had many of the symptoms of it since I was a kid--always kind of a "night owl", but it got extremely bad my Sr year of high school and into college.  

Some people do grow out of it......obviously not you.

Quote:

I did do a stint (one semester, about 3months) of allowing myself to operate on a "flipped" schedule about a year and a half ago--I still had fairly fragmented sleep, although it wasn't as bad as it is right now.  Even with 10mg of Ambien, I'm aware of waking up at least 3-5 times at night.

I also took 10mg Ambien during the sleep test (I was told it wouldn't impact the results).  I got to the center at 9pm, was set up by about 9:45pm...read my book until about 10:45pm then took 10mg of Ambien and dropped off to sleep.  I felt fairly out of it until about 3am, then I was awake numerous times between 3am and 6am when they stopped the test.  I don't know how that affects the sleep test, or if that was factored into the sleep onset time.  I was told the test didn't "start" until i turned off the light.  However given the sleep onset time, I'm wondering if they included my reading time.  Once I take Ambien I'm usually out in about 30min.

I agree that the sleep architecture is out of whack, and that the wakeups and lack of SWS is probably what is causing the extreme sleepiness during the day.

IMHO, this is the key.

Quote:

My sleep doctor is adamant that it is Obstructive Sleep Apnea, and that CPAP will cure me.  She did not go into any detail about possible causes of RDI's.  My tonsils and adenoids are are normal size.  I have a bit of chronic inflammation in my nose from allergies/repeated sinus infections when I was younger, but allergies seem very under control with flonase and claratin.  She thinks it's just the structure of my face that is causing sleep apnea.  Seriously.

I think its time to look for another specialist. Preferably in one of the large university or training hospitals where there should be a lot of information and experience.

Quote:

As a kid I sometimes had sleepwalking and night terrors...actually all the way up until I was about 23.  I haven't had them in a long time--probably because I'm getting little to no SWS.

Probably............and all the more reson to see another specialist. You have a history of sleep related problems.......possibly neurologically related.........MIGHT be a kick on from these.

Quote:

Very frustrating that I've been on CPAP 2 months--DILIGENTLY, 100% compliant--and still no improvement.  

Please let me know if you have any more questions or suggestions!  I really appreciate your time

RAM Sleep probably has it right with UARS (you should google UARS for good definitions)...........however I think it a little disingenious of him to start recommending possible medication for dealing with it..........particularly with such a complex case as yours.

It is very important that you seek good professional advice, because (IMHO) there may be a number of issues here that need to be addressed............and you have your whole life to enjoy (once this is under control).

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

RAM_Sleep wrote:

mutantfrog wrote:

The Dr diagnosed it as "sleep apnea".
However the tech was confused how it could be sleep apnea when my AHI is 0, and my oxygen saturation is good.  The tech thought it might be UARS instead.

This.

It is UARS, which is indicated by:

RDI: 11.6
AHI: 0
RDI during REM sleep: 17.5 per hour
RDI while supine was 9 per hour

--

It may sound simple, but you could always try breathe right strips or there is an alternate product that you can PM me about. I believe that moderators here will edit the post if I put in the product title, but ill try NOSOVENT.

One thing is certain, it surely isnt sleep apnea, however UARS can bring with it very similar signs and symptoms.

Let me just rephrase:

You could try breathe right strips or the alternate product to see if it helps.

If that doesnt improve your fatigue level and maybe even if it does, then see your physician to ask about treatment options.

Sorry about that.

I dont think that it is irresponsible to offer a treatment option, especially if it has the potential to help. There is how we do a lot of things... we try them and if they work great and if they do not, then we try something else. But I should have phrased it differently I suppose.

Daniel,

Yup--all the standard treatments for DSPS.  None have worked for me.

Unfortunately, this actually my 3rd sleep specialist.  There aren't too many in my area.  The first 2 actually refused to do a sleep study (oh it MUST be just fatigue from DSPS, you're just not compliant, etc etc) the 3rd one at least was willing to go get some data.

I don't know what neurological problem would cause all of these things.  I have mentioned/asked several times (to the different sleep dr's, to my GP, etc) if they could be related or somehow indicate a larger problem, only to be shot down every time.  (I have migraines with auras as well)

I didn't see RAM's suggestion as disingenuous...I assume that anyone posting here is a rational adult, and would of course consider consulting their physician.  But at the same time, physicians are not perfect, they make mistakes and have biases...so I always appreciate suggestions from other members.  

Thanks again for the help/suggestions.  I'm going to try the nasal strips and see if that's helpful.  I'm also going to look into trying a different nasal spray--possibly there's an option out there that might work better than Flonase?

I don't know what else to try, other than that.  
How long does it take (for people in general) for CPAP to be effective in relieving symptoms if it's going to work?  Just out of curiosity...

mutantfrog wrote:

How long does it take (for people in general) for CPAP to be effective in relieving symptoms if it's going to work?  Just out of curiosity...

Ah...the million dollar question.

It can vary significantly between patients, but a good estimate may be a month or two. Again though, it may be a few days for me and a few months for this other guy.

RAM_Sleep wrote:

mutantfrog wrote:

How long does it take (for people in general) for CPAP to be effective in relieving symptoms if it's going to work?  Just out of curiosity...

Ah...the million dollar question.

It can vary significantly between patients, but a good estimate may be a month or two. Again though, it may be a few days for me and a few months for this other guy.

Gotcha. :)