Not feeling any better yet on CPAP..

[beyondtired]

I was diagnosed with mild sleep apnea, and I've been using CPAP since March 22. I was set at a pressure of 8 during the titration. I wanted to keep the pressure setting there until I got used to everything, and also to see how my data was at that pressure. So my S9 is currently set in CPAP mode. I still have a little time left on the 30 day mask policy from the DME. I've been trying out both the Mirage Softgel nasal mask and the Swift FX nasal pillows. At first, I had some trouble getting used to wearing a mask, and then I tightened the masks too much which gave me more face sores. I've been getting more accustomed to the masks lately though.

Since starting CPAP, I'd say that I've had at least 8 nights total where I got a good night sleep while wearing the mask the whole night through. My AHI's have been in the 1's and 2's most of the time. My leak rate is never high. Though, I don't feel any better at all yet. I still wake up completely unrefreshed, no matter how much sleep I get. I could sleep the whole day, every day, if I didn't force myself to get up. When I get up, I never 'wake up' at all during the day. I'm like a complete zombie in a trance. My short term memory and brain fog are still really bad too. I know I have to give it time, but I thought I would have felt at least a little better by now?

[Emilia]

If you don't have it yet, get the software for your machine and monitor your therapy. For the S9, you can send a PM to forum member, Uncle_Bob, and he'll send you the link to download the software (it is Windows based software).

Your numbers sound good so far for a newbie.... it will take time to repay your sleep debt and get over that groggy feeling. Some folks are lucky and get it right away, and for others it can take a long time. I am 7.5 months into it and I am still quite tired during the day even after 7 or 8 hours of great sleep with low AHI numbers. But I was probably suffering from OSA for decades before diagnosis.... lots of years to make up for.

Keep at it..... and best of luck!

[Beckah54]

I'm right there with you, Beyondtired. I've been on Cpap therapy for several years and I still have days or weeks that aren't so great. But the days that I wake up feeling good are worth the hassle of masking up every night. I know it gets discouraging when you're not seeing results right away but you have to hang in there and keep putting the mask on every night.

Sleep is such a fragile thing now compared to the days before apnea. It's harder to go to sleep and harder to stay asleep. Sometimes I just want to chuck the mask in the corner and say to heck with it. Unfortunately, I feel worse without it, bad headaches, restless legs, nightmares, you know, all the side effects of oxygen desats.

So it looks like we have to put the mask on one night at a time and let the machine do it's job. I can't promise it will get better with the Cpap but I'm pretty sure it will get worse without it. My worse nights on Cpap are so much better than the ones before I was diagnosed.

Has your doctor checked for any other problems that could cause similar symptoms? Thyroid and depression, among other things, can mimic the same symptoms of tiredness and brain fog. I hope you find some answers and feel better soon.

[Pugsy]

While I know that it seems like you have been on the machine for a long time, you really haven't and 8 good nights really isn't that many.

I know you read about people feeling some improvement rather quickly but there are many, many of us who saw only very gradual improvement and it took a long time. I just knew I would be one of those that saw a miraculous improvement immediately. I had good attitude. Minimal mask issues, etc...... Other than the nocturia ceasing once I had my pressure dialed in and some lessening of morning headaches, I couldn't really say that I was hugely different. At about 3 to 4 weeks of therapy I started to see just a little more improvement, very gradual.

Give it some time. It really does get better. While you are "giving it time" take a hard look at anything else that might impact the restorative powers of sleep. Sometimes it isn't all OSA fault that we don't feel so great.
Some things to watch for... Fragmented sleep for any reason, pain, insomnia.. meds... other health issues.... bed comfort....stress from worrying about not feeling better....you get the idea.

Right now think of it as "preventative" medicine.. Preventing further damage to your body, preventing that heart attack, preventing that stroke. While not an easy pill to swallow, sometimes that is what we have to do while the body recoups.

[bap40]

As it has been said, it does take time. For me it was not a sudden event. It was a gradual process. One day about 6 months or so into therapy when it just dawned on me that I felt better. So it does take time but you do have to keep at it. It WILL happen!!!!

Good luck and hang in there. It is all worth it in the end.

[beyondtired]

Thanks everyone,
I called the sleep doctor's office today to make a follow up appt. with the sleep doctor, concerning how CPAP treatment is going and everything. They told me that the earliest appt. is May 25. I thought that it might take a few weeks to get in, but I wasn't expecting it to take that long. I guess I should have called at an earlier date to make the appt. By May 25, I should know a little more though if CPAP is going to start helping my symptoms some. Is there a usual amount of time after starting CPAP that a person follows up with the sleep doctor?

I do have the RESscan software downloaded for the S9. Though, I have to get a card reader, cause I don't think my computer has an SD card slot. In the meantime, I've been checking out the numbers from the screen of my S9 Autoset each day, and they seem to be pretty good, like I had mentioned. Since I'm feeling so exhausted and out of it all the time, I think it might be tough for me to follow what is going on in the detailed graphs and all that.

I have had some problems with depression over the years. Though, i've gotten better with that in more recent years, by trying to think more positive and what not. When I got real depressed, sometimes I would stay in bed cause I didn't want to face some of my problems. Though, I was never completely exhausted like I am now. Nowadays I want to get out there and do more things, but it's hard to when you feel sleepy all the time. Also, when you try various treatments over the years, and nothing helps, that can put a person back into that depressive mode of feeling. In the past, a doctor had thought I had low thyroid cause of my blood test. I was put on Armour thryoid, and my numbers improved, but I didn't feel any better. So he had me wean off of the thyroid meds.

I don't understand it.. I woke up unrefreshed one morning out of the blue, after getting a full night of sleep, way back in 2003. Before that, whenever I'd get about 8 hours of sleep, I'd feel fine during the day. Since that one day, I've never woken up refreshed again, no matter how long I sleep, and I'm exhausted the whole day. I would have thought that it would have been a more gradual process of feeling run down, instead of so quickly. It doesn't seem normal at all.

[Pugsy]

You get the card reader so you can get those reports. Don't worry, someone here will help you decipher them.

While you are getting, do you have a copy of your sleep studies? If not, make arrangements to get them. Full studies if you can (not just the summary pages). If you had a formal titration, get copies of that as well.

It's a starting point. Have to start somewhere to see if there is anything that could possibly explain lack of improvement. Then you can look at other possible factors if need be.

[ozij]

You get the card reader so you can get those reports. Don't worry, someone here will help you decipher them.

Right.

It's a starting point. Have to start somewhere to see if there is anything that could possibly explain lack of improvement. Then you can look at other possible factors if need be.

Right again.
Suppose you have both sleep apnea and a thyroid problem. If that's the problem, neither treatment on its own would help, but both together may.

Let's see what we can see as far as the OSA is concerned. You may be having breathing interruptions that don't register on the screen, and that may be visible in the software.
Do you have EPR set? What is it set at?
I understand your decision of leaving the setting at CPAP 8 "till you get used to things" -- but that does leave open the possibility that either mode (fixed) or level (8) are not optimal for you.

Are you ready to consider a change in either?

Are you basically comfortable with the hose and mask -- or are you perhaps still semi-awake at night aware of all those mask hose issues?

I too felt things change gradually -- don't let these two week discourage you, very often, those who have mild apnea don't respond as dramatically as those who start out with severe apnea. But when things settle down, its much better.

[archangle]

Most computers made in the past few years have SD slots. Check carefully, they're often on the front panel.

If not, USB SD card readers are cheap and easy to find. Can someone confirm that a standard USB SD card reader will work?

Do you know if your machine is set to do auto CPAP? Even though it's autoset capable, it might be set to manual CPAP mode.

[ozij]

Can someone confirm that a standard USB SD card reader will work?

Confirmed.

[Starlette]

Hi Beyond.

If I may propose an idea, since you have two masks, is starting a sleep journal that works in conjunction with your data software.
My sleep journal looks like this....then you can see what is working/not working. Just an idea. This has REALLY helped me.

NOTE: I'm working the same masks

Starlette

[beyondtired]

You get the card reader so you can get those reports. Don't worry, someone here will help you decipher them.

While you are getting, do you have a copy of your sleep studies? If not, make arrangements to get them. Full studies if you can (not just the summary pages). If you had a formal titration, get copies of that as well.

It's a starting point. Have to start somewhere to see if there is anything that could possibly explain lack of improvement. Then you can look at other possible factors if need be.

Concerning my sleep studies, I had my first one done in early 2004, which was a few months after I first started having symptoms of excessive daytime sleepiness and short term memory problems. The sleep test reported that I didn't have sleep apnea at the time. Though there was significant sleep fragmentation, with an arousal index of 29.2 an hour, mostly spontaneous arousals. After first falling asleep during the study, I went into a brief period of REM sleep, which is atypical. An MSLT was done the next day that showed an average sleep latency of 11 minutes and no episodes of sleep onset REM.
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My second sleep study was down in January of this year. A 10 mg ambien was taken before the test. These are the results:

Baseline SpO2 was 98.3 %
Total sleep time was 228.0 minutes.
Sleep efficiency was 54.2 %
Sleep latency was 17.5 minutes.
REM sleep latency was 13.5 minutes

N1 53.9 % 123.0 minutes
N2 40.8 % 93.0 minutes
N3 3.9 % 9.0 minutes
REM 1.3 % 3.0 minutes

Apnea Index = 0.0 events per hour of sleep
Hypopnea index = 12.9 events per hour of sleep
AHI = 12.9 events per hour of sleep
Supine AHI = 10.2 events per hour of sleep
REM related AHI = 0.0 events per hour of sleep
Nadir Sp02 = 90.0 %


Mild obstructive sleep apnea is present in addition to intermittent snore arousals. These caused a mild degree of sleep fragmentation and hypoxemia.

No significant PLMs are noted.

No significant cardiac arrhythmias were seen.

Diagnosis: Adult obstructive sleep apnea

An MSLT was done the next day and I only fell asleep during one of the naps, and I didn't have sleep onset REM during that nap.
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I had a titration in March of this year. A 10 mg ambien was taken before the test. These are the results:

Baseline SpO2 was 96.8 %
Total sleep time was 319.5 minutes
Sleep efficiency was 70.9 %
Sleep latency was 7.0 minutes
REM sleep latency was 292.5 minutes

N1 15.6 % 50.0 minutes
N2 55.4 % 177.0 minutes
N3 21.9 % 70.0 minutes
REM 7.0 % 22.5 minutes

Summary of events seen on all levels of therapy:

Apnea index = 0.0 events per hour of sleep
Hypopnea index = 4.1 events per hour of sleep
AHI = 4.1 events per hour of sleep

CPAP was titrated from 4 cm of water pressure to a maximum of 10 cm of water pressure. Bi-level pressures of 8/4 and 8/6 cm of water pressure were also investigated. At a CPAP setting of 8 cm of water pressure, the patient demonstrated a marked improvement in his obstructive sleep apnea. AHI was reduced to 1.1 events per hour. Oximetry was generally well-maintained. REM sleep was seen.
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During my first appt. with my current sleep doctor, I had showed him the results of my first sleep test, that was from several years back. Then after having my more recent sleep test(January of this year), he went over those results with me, and said that I might have had UARS during my first sleep test that progressed eventually to sleep apnea. Since I started having symptoms of excessive daytime sleepiness in late 2003, my symptoms haven't really gotten worse over the years though. Not that my EDS could really get any worse that it already is, but still, does that seem odd that it hasn't gotten any worse?

Concerning the REM sleep on my sleep tests, it doesn't really match up with my REM sleep at home. I know that some people with sleep apnea weren't remembering many dreams until they started CPAP. Though, I'm different, in that I remembered a whole lot of dreams, and tend to wake up after some of them. I also can dream right away after falling asleep, and I dream during naps. I could get woken up like 5 minutes after falling asleep, and I remember dreaming. Before I even fall asleep, I usually start to have various dream like images that pop into my head before I drift off to sleep. I wasn't sure if this excessive amount of dreaming had to do with the sleep deprivation of sleep apnea, or something else such as narcolepsy? Since starting CPAP, the dreaming hasn't changed at all. I still dream a lot, especially when it's closer to the time that I have my alarm set to get up. If I keep hitting the snooze button, it's dream after dream after dream...

[beyondtired]

You get the card reader so you can get those reports. Don't worry, someone here will help you decipher them.

Right.

It's a starting point. Have to start somewhere to see if there is anything that could possibly explain lack of improvement. Then you can look at other possible factors if need be.

Right again.
Suppose you have both sleep apnea and a thyroid problem. If that's the problem, neither treatment on its own would help, but both together may.

Let's see what we can see as far as the OSA is concerned. You may be having breathing interruptions that don't register on the screen, and that may be visible in the software.
Do you have EPR set? What is it set at?
I understand your decision of leaving the setting at CPAP 8 "till you get used to things" -- but that does leave open the possibility that either mode (fixed) or level (8) are not optimal for you.

Are you ready to consider a change in either?

Are you basically comfortable with the hose and mask -- or are you perhaps still semi-awake at night aware of all those mask hose issues?

I too felt things change gradually -- don't let these two week discourage you, very often, those who have mild apnea don't respond as dramatically as those who start out with severe apnea. But when things settle down, its much better.

I looked again at the front of my computer, and I didn't see a spot for an SD card. So I'm going to have to get an USB SD card reader. I was a little worried to take the SD card out of the Autoset during the compliance period, in case I'd accidently delete the compliance data somehow while using the Resscan software(not that that would happen, but just being cautious). Though, the DME had put a wireless modem in my Autoset anyway to track compliance data. He told me that they do that with all their Medicare patients. Concerning compliance date for Medicare, do I have 90 days to show compliance, and that would be to use the machine for 4 plus hours a day, for 75 percent of the days during a 30 day period? It looks like I'm probably going to fit the compliance during the first 30 days. So could I give the wireless modem back to the DME during after that, or will they want to monitor it for a full 90 days?

I currently have the EPR set to 2. I'm open to changing the pressure from a fixed setting of 8 in CPAP mode to the auto mode. I was thinking of trying that this weekend. I know how to do it, but I'm not exactly sure what I should set the pressures at, especially since I'm getting low AHI numbers at a pressure of 8. Should I start at 8 and go up to around 10 or so? Or start at 7?

[beyondtired]

Hi Beyond.

If I may propose an idea, since you have two masks, is starting a sleep journal that works in conjunction with your data software.
My sleep journal looks like this....then you can see what is working/not working. Just an idea. This has REALLY helped me.
The last columns that didn't show is Oximeter (if I decide to take a reading of my oxygen saturation), Sleeping Pill (if i decide to take a sleeping pill) and notes.

NOTE: I'm working the same masks

Starlette

That is a good idea to keep a sleep journal graph comparing the masks. The problem is that I have to decide real soon which of the two masks that I want to keep, since my 30 day mask fit thing at the DME ends next week I believe. I was leaning towards the Swift FX at first. Though, now I'm leaning more towards the Mirage softgel nasal mask.

I'm having a tough time deciding cause I like having less on my face with the Swift FX. Though, ever since I had tightened the back strap on the Swift FX, it's been downhill. My nostrils were in so much pain when I woke up. I've loosened the strap since then, and have switched some nights with the Mirage softgel to give my nostrils some time to heal. Though I still get a sore nose sometimes with the FX, and the last time I used it, the leak rate was about 22, which is getting real close to that 24 number that I don't want to go over. That short hose hurts my nose also when it pulls on the mask. I've put lansinoh on my nose at times, but it still stays pretty sore. When the DME fit me for the Swift FX, he thought a small size would work. Though, then he saw the small was too small, and he used a medium. I'm wondering if maybe I need a large? He didn't give me the other sizes to try. Concerning the mirage softgel, I get a pretty bad red mark on my forehead each night that I use it. I might get a padacheek for the forehead if I decide on that mask. I wish I would have tried on more than two masks during this 30 day policy. I should look into getting a backup mask, after I decide which mask will be my primary.

[Starlette]

I'll let the experts of pillows take lead on commenting. As for the Mirage, if you're getting a red mark on nose, mask needs to be loosen in small increments on top so as not to loose your seal. Remember you can (in increments too) move the mask away from your face via the turning knob. Massage the red mark will restore oxygen back to the skin, skin has been without oxygen for the last 6 - 7 hours.

Beyond, only you can decide what will work for you. However, I'll give give you my "humble opinion" which way to turn knowing what I know now. If I were you, I'd choose the Mirage first just for the sake of everything being new and settling/getting used to the whole world of cpap. Then go for the pillows later on once you get acclimated. Just like I told someone else in a PM, I/we on the forum can't chose a car or guitar or a computer for you, same thing for a mask. It has to feel right for you.

Starlette