Unanswered Questions

Hi all. I am new to the forum, which I ran across through Google. I am going to go ahead and apologize in advance for the lengthy post, as well as the lack of organization to the post. Just a little background on my equipment: I have a Respironics Remstar pr system one with Resmed nasal mask and I don't use the humidifier. My machine was set to a pressure of 13, but they changed it to Auto PAP to see if I am getting to much pressure.

I am 26 and have struggled with sleep issues for as long as I can remember. My father was diagnosed with severe OSA approx. 20(?) years ago and ever since I was in my early teens he tried to get me to do a study. He kept telling me how he never knew what it felt like to wake up actually feeling rested until PAP therapy, but I didn't want to mess with all the bulky equipment so I continued ignoring my problems. Fast-forward to 2010, I had just graduated from college and was about to come off of my parents insurance. Because my new job did not offer any benefits including insurance, I decided I needed to do a sleep study before I went off my parents insurance. I was diagnosed with OSA in December 2010. I thought this is where my life would finally turn around, but this only perpetuated my problems...

When I came off my parents insurance and tried to get an individual policy I discovered that OSA was considered a pre-existing condition and nobody would cover me until I had been in treatment for 3 years and even if they would've covered me, I sure couldn't afford $300/month for a major medical policy. I used my PAP religiously for about the first 6 months even though each day I felt worse and worse until I finally gave up. I tried several times over the last few years with PAP therapy, but it never seems to help.

I wake up every day feeling more tired than the night before, light-headed, and fatigued almost like a hangover. I am constantly in a fog and have problems even coming up with words to finish a sentence. I am a light sleeper and wake up quite a bit during the night. I feel like I can take a nap at any point during the day, including right now while I'm writing this. I have awful dreams; not necessarily emotional dreams like family or friends dying, but physically exhausting dreams. For instance, a few nights ago my dog got loose and I spent the night chasing him up and down the interstate. The next morning, I woke up feeling like I had been chasing a dog up and down the interstate all night. Funny thing is, I don't live anywhere near an interstate and I don't have a dog. These type of dreams happen most nights and have been for years. I have been to countless doctors about it over the years until I lost my insurance, but they all just think I'm depressed and want to put me on anti-depressants.

After PAP therapy didn't help, and at times seemed to make things worse, I decided that this was just something I was going to have to live with. This was a real disappointment, especially because of how much my dad talked up PAP therapy. Late last year I changed my mind again and decided that I couldn't continue my life waking up in the morning and wishing my day away hoping that the next would be better. I am 5'10" and weighed 235 lbs, so I was very much overweight and it kept getting worse along with everything else. I used smokeless tobacco constantly and drank alcohol more than I should've. Even though my problems have been around long before I was overweight (in fact, I would bet that my weight gain had much to do with my sleep problems) I figured being overweight was making things worse, so I decided to make some drastic changes. Since last October, I have changed my diet, I quit using tobacco, I only have an occasional beer, I have lost about 50 lbs, and I started using my CPAP again. However, I still have exhausting dreams and wake up everyday feeling fatigued. So, while my appearance my be better, I still feel miserable. I have to fight myself to keep my mask on during the night because I always want to sleep on my stomach, but eventually the mask comes off and I'm face first.

Since I haven't had insurance for the last several years, I hadn't been to a doctor, but a couple weeks ago I decided that something has to change. I couldn't handle it anymore, so I went to the place where I got my CPAP and had them look at it to make sure everything was working properly, and it was. They told me I really needed to see a physician again. I told them there was no need because I already knew what they were going to tell me, "I am depressed and need to take an anti-depressant." But, reluctantly I went back to my primary physician and sure enough he said I was depressed. I told him "To be honest, I do find myself feeling depressed at times, especially as of late because I have worked so hard to feel better and it continues to get worse, but I don't feel like the underlying issue is because I am depressed. I feel like if I could just get a good night's sleep, all other symptoms would take care of itself."
He proceeded to write me a prescription to Prozac, which I have yet to take. They ran blood work and it all came back normal, so I was diagnosed with Major depression and chronic fatigue syndrome, which makes me feel like a hypochondriac. There has to be a simple explanation and fix for this, I just haven't found it yet.

Again, I apologize for how long this post is and how I was kind of all over the place. Does anybody else have these problems? If so, how were you able to correct them? Thanks for your help.

Start with the basics to make sure that your cpap therapy is optimal or sub optimal.
What model machine are your using now? Model number for the Respironics machines are normally shown on the bottom of the blower unit. A 3 digit number which likely will have DS or REF in front of the 3 digits.
Tell us the model number.
Also...what mask model name are you using?
Once we figure out exactly which machine/mask you are using please add it to your equipment profile...see how I did mine.

Waking often during the night for any reason is a recipe for feeling like crap during the day.
Any idea why? Do you have trouble going back to sleep when you do that?
How many hours of sleep are you averaging? Any trouble going to sleep initially at bedtime?

Hello and welcome. I'd like to first say that symptoms of OSA (or any sleep disorder for that matter) can mimic and be mistaken for depression or chronic fatigue syndrome, or those conditions can be secondary to the sleep issues, or they can be present separate from the sleep issues. It can take a bit to sort it all out, but I personally don't feel good about anyone getting assigned a diagnosis and prescribed a heavy duty medication without the doctor also pursuing resolution of a previously diagnosed and untreated condition known to cause the same symptoms. I'm glad you are here. No matter what your other conditions may or may not be, no matter how they originated, one fact in your story is that you have untreated OSA that needs to be resolved. You may not have had the kind of targeted support when you tried CPAP in the past to help you work through complications, but this time you do. Please be encouraged that a lack of success in the past does not have to mean you can't successfully use the treatment now. You are at a different place in your life with the desperation of how bad you feel, and your motivation to succeed is higher due to running out of options. Give people here the information they need to work with and move forward leaving your past experience in your past. Fully expect this time around to be different. I understand getting off to a bad start. I did too. But seven years into this treatment it's a distant memory.

Thanks for such fast replies and support... I have a PR System One 550p Auto CPAP with a Respironics Comfortgel nasal mask. I don't usually have a problem getting to sleep initially. I try to keep a pretty consistent schedule of going to bed between 9 and 9:30 and getting up between 5:30 and 6. I do wake often, but I tend to fall back asleep pretty easily and my dreams continue. Thanks for your help!

bradc wrote:Thanks for such fast replies and support... I have a PR System One 550p Auto CPAP with a Respironics Comfortgel nasal mask. I don't usually have a problem getting to sleep initially. I try to keep a pretty consistent schedule of going to bed between 9 and 9:30 and getting up between 5:30 and 6. I do wake often, but I tend to fall back asleep pretty easily and my dreams continue. Thanks for your help!

It is a machine that has data. Install the software Sleepyhead and look at how your night goes in great detail. If you are waking up during dreams you may be having events that are not being controlled. Some people require more pressure during the REM stage.

Good. You have a 550 machine. It will work with SleepyHead...check the links in my signature line for information on where to get it and how to use it.

Let's see what it is saying first of all. Post an image of a typical report for us to evaluate.
Here's how
Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779

Turn off the AHI graph by going to Preferences and remove the check mark for AHI graph. It isn't really needed because the AHI bar graphs showing event category breakdown on left side of daily SleepyHead reports are more informative.
All we need for now would be these items...examples are in the screen shot thread.
AHI bar graphs on the left side
Graphs on the right side...Events graph, flow rate graph, Pressure graph and leak graph....don't need all those others.

When you wake up often during the night? Approximately how many times that you remember? Any reason?
What meds might you be taking now...even OTC?

Might you also be a diabetic? Quite a few of us on the hose are Diabetics. Diabetics can have concurrent problems with Depression, and both of them need to be treated. Good treatment for sleep apnea can improve the Diabetes (Blood Glucose levels) for most of us.

Pugsy wrote:Good. You have a 550 machine. It will work with SleepyHead...check the links in my signature line for information on where to get it and how to use it.

Let's see what it is saying first of all. Post an image of a typical report for us to evaluate.
Here's how
Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779

Turn off the AHI graph by going to Preferences and remove the check mark for AHI graph. It isn't really needed because the AHI bar graphs showing event category breakdown on left side of daily SleepyHead reports are more informative.
All we need for now would be these items...examples are in the screen shot thread.
AHI bar graphs on the left side
Graphs on the right side...Events graph, flow rate graph, Pressure graph and leak graph....don't need all those others.

When you wake up often during the night? Approximately how many times that you remember? Any reason?
What meds might you be taking now...even OTC?

Hopefully this will work.... http://s67.photobucket.com/user/acarrol ... sort=3&o=0
There should be 4 images of 4 different days you can scroll through.
I have no idea how many times a night. It feels like it is pretty quick though. I wake and am back asleep within seconds, it seems. Except when I wake during dreams, which can sometimes take a little while to fall back asleep, but normally not more than a few minutes. It just depends on what I'm dreaming about and how stressed out it makes me. I do wake from not breathing occasionally, but no where near as often since I have dropped several pounds. I am not on any meds except OTC allergy meds every now and then. I have tried all kinds of OTC and RX sleep aids over the years, but I still wake.

Overall your reports aren't horribly exciting.
Your leak line is excellent...nothing much going on there that might explain things.

Overall your AHI is within technical acceptable limits of being less than 5.0. Hours of "sleep" seem to be adequate as I only saw 1 with less than 7 hours and the others being 8 or 9 hours. I say "sleep" because by your own admission you wake often. We can't tell with the information given here when those awakenings occurred.

Your pressure seems to range between 5 and 9 most of the time with occasionally bumping 10cm. Not a huge range and normally not a problem unless you happen to be one of those people who find that the least little bit of pressure change disturbs your sleep.
But I gathered that this APAP machine with the variable pressures is not what you were on initially...is that correct? What pressure and machine were you using in the past?

The only thing I see on these reports that remotely might be something to try to fix would be the snores and the handful of flow limitations but to be honest...I don't know that reducing those would make much of a difference on how you feel.
Wouldn't hurt to try though. To do that just takes a little increase in that minimum pressure..probably from 5 cm to 6 cm.

Whatever is causing the multiple wake ups needs to be figured out and fixed if at all possible. 3 or 4 wake ups are probably normal but if you are waking up more than that and certainly if in double digits...just the fragmented sleep even without OSA could be responsible for your unwanted symptoms.

You know there's so much more to feeling well rested than just treating OSA and getting a nice low AHI.

When was the last complete physical? Blood draw studies to check usual stuff to include thyroid?
Also...you might check on vitamin D levels...hormone levels too.
Any pain issues? Recreational drug use? (sorry, but have to mention it though you don't have to answer).
Anything that might affect sleep quality? Bed comfort? Stuff like that?

I had blood work done a couple weeks ago, and everything came back normal. I have been using the same machine, but until April 14 the pressure was set at 13. They changed it to auto PAP to see if I was needing more or less pressure. No rec. drugs. No pain, though my neck tends to be sore from the mask harness. My bed is maybe 3? years old.

How do you do with this kind of "sleep hygiene" stuff?:

http://www.rc-hr.com/eas/LinkClick.aspx ... tabid=2910

http://www.ucdenver.edu/academics/colle ... ygiene.pdf

http://www.cdphp.com/~/media/Files/memb ... sleep.aspx

Unless your weight reduction has caused a dramatic change in pressure needs I sure don't know where the 13 cm cpap pressure came from.
From these reports...maybe 8 or 9 if using cpap mode. You simply don't ever go above 10 and if the minimum was 6 instead of 5 there's a good chance it wouldn't even hit 10 in apap mode.

Vitamin D levels aren't normally something that is routinely check with the standard labs. Something to think about. Low blood levels of vitamin D can sure cause daytime symptoms

Sounds like you're in exactly the same situation I'm in. Dealing with depression, boozing it up in the past, still not feeling rested in the morning despite CPAP functioning normally. Been doing the e-cig thing, it's helped my mood, and the stimulant effect has killed off my sleep attacks during the day.

With the multiple awakenings at night, it could be sleep maintenance insomnia, this can be caused by a few things. Blood sugar is one, liver, another, and prostate as well. Could even be anxiety on some level.

Are you drinking before bed? If so, don't. It'll ruin the second half of your nights sleep (despite putting you to sleep earlier). I've noticed whenever I give into gluten cravings (I'm gluten intolerant) my sleep is ruined. Are your B12 levels normal?

If it's the wakeups that're doing this to you, which I assume they are, you need to follow a sleep hygiene program, someone was good enough to post one I see. In addition, and I know this sounds counter intuitive, but a sedative before bed would be beneficial. 5HTP, melatonin, or l-tryptophan should keep those wake-ups at a minimum if taken at night, and 5HTP or L-tryptophan can also be taken in the morning to balance your mood. It boosts the amount of serotonin and will greatly help with depression. Doc said I was probably misdiagnosed as depressed, and it was the sleep issues all along. He literally told me to my face last week "you are not suffering from chronic depression." Sleep issues can really mess with your head.

I'd recommend trying the 5HTP/l-tryptophan before filling the script for prozac, unless you feel really, really depressed, as in, immediate danger. I'm not a doctor, of course, but from my experience with anti-depressants, they only made my sleep issues worse.

Do you wake up with a dry mouth? I am wondering if you are breathing through your mouth?

With a nasal mask if you are mouth breathing you are losing your therapy. If you are snoring still that means the airway is not being
held open enough.

Thanks for the input jnk. I have never thought about "sleep hygiene." I am definitely not following some of those guidelines, namely watching TV and reading in bed. What about listening to music at low volume? I absolutely cannot sleep without something to keep my mind occupied. I tend to have trouble with anxiety and listening to the TV or music helps to ease my mind or at least keep it occupied. If not music, what can I do for this?

Pugsy, The 13cm was from the sleep study I had in December of 2010. I guess weight loss was the reason they wanted to see if I needed a pressure change, and since I don't have insurance, I guess changing it to APAP was the simplest and cheapest (free) way to check. I can't imagine having a vitamin D deficiency. Being a forester, I spend most of my time outside and I eat lots of dairy products. Although, I may be completely mistaken on causes of vitamin D deficiency. Thanks again for all the responses and suggestions! This has already been more informative than any doctor visit.