Is there Hope?

[Good_Night_Sleep]

Hello Everyone,

I have been reading post on this forum for a while now, trying to continue to keep faith that one day I will feel normal. I decided to finally join and share my experience so far as there seems to be a lot of knowledge here.

Let me start my saying that I am 27 and over weight. For many years I have complained to various doctors about me being sleepy, tired, and having no energy. Finally my doctor said that he wanted me to get test for sleep apnea,in which he thought could be the root of my problems. I scheduled a appointment with a local pulmonary specialist in which he recommended that I have a sleep study done. My sleep study did reveal that I have mild sleep apnea. I can't remember the exact numbers but I believe he said that the study showed that I have 10-15 apneas.

I then went back for my second sleep study to determine what pressure was needed to reduce or eliminate the apneas. The results from this study showed that my pressure was 14. After another trip to the doctor, I finally was able to get my cpap machine in hopes that I would be on my way to recovery. Little did I know it was not that simple.

I have been using the cpap machine for over 2 months and notice no difference in my symptoms. I am tired all day long and can barely keep my eyes open. At this point it is starting to effect my life because all I feel like doing is sleeping all of the time. Over the last 3 months I have had every kind of blood test to rule out of health problems that could be causing my fatigue. Some of the test that I have had are vitamin D, thyroid, inflammation, cortisol, and insulin. Thankfully all have came back relatively normal however I am still on the search to find out why I am so tired.

Even though I am overweight, I don't have any major health problems. I do have allergies/sinus problems and acid reflux, however everything else is pretty good. Most recently when I returned back to the doctors for a follow up, I expressed that I have not really been feeling any better. He informed me that the readings from the cpap machine showed that my apneas are being corrected and the pressure settings were correct. His only other recommendation was to prescribed Nuvigil. His thoughts were that some people still experience tiredness even though the cpap is treating their apneas.

For the past week I have been taking Nuvigil in which it does help out a lot in getting me through the day, however I still have no energy and go to sleep when I get home. I imported the data from my cpap machine using sleepyhead in hopes that someone with more experience can offer some advice. I am willing to try pretty much anything at this moment. Please let me know if this is enough information or if anyone has any questions. I appreciate everyone's input in advance.

Thanks and goodnight!


CPAP Statistics
34 days of CPAP Data, between Tue Apr 29 2014 and Tue Jun 3 2014
Details Most Recent Last Week Last 30 Days Last 6 Months Last Year
CPAP Usage
Average Hours per Night 06:06 06:20 06:15 06:24 06:24
Compliancy 100% 86% 96% 97% 97%
Therapy Efficiacy
AHI 0.82 0.97 1.29 1.27 1.27
Obstructive Index 0.33 0.38 0.44 0.42 0.42
Hypopnea Index 0.49 0.47 0.78 0.77 0.77
ClearAirway Index 0.00 0.11 0.07 0.08 0.08
RERA Index 0.00 1.13 1.37 1.42 1.42
% of time in CSR 0.00% 0.00% 0.01% 0.02% 0.02%
Leak Statistics
Average Leak 1.69 2.07 2.95 2.77 2.77
90% Leak 5.00 9.00 9.00 9.00 9.00
Pressure Statistics
Average Pressure 17.00 14.69 14.18 14.14 14.14
Min Pressure 17.00 4.00 4.00 4.00 4.00
Max Pressure 17.00 17.00 17.00 17.00 17.00
90% Pressure 17.00 16.00 16.00 14.00 14.00

Changes to Prescription Settings
First Last Days AHI FL Machine Pr. Rel. Mode Pressure Settings
6/3/2014 6/3/2014 1 0.82 0.00 PRS1 C-Flex+ x2 CPAP
4/29/2014 6/2/2014 33 1.29 0.00 PRS1 C-Flex+ x2 CPAP
Efficacy highlighting ignores prescription settings with less than 5 days of recorded data.

Machine Information
Brand Model Serial First Use Last Use
Philips Respironics RemStar Auto with A-Flex (560P) 4/29/2014 6/3/2014

[Pugsy]

Welcome to the forum.

You say you have been using the machine over 2 months yet the data says 34 nights..did you skip some nights?
Also it looks like average hours of use per night is running around 6 hours. Do you ever sleep without the machine? Or do you simply only get 6 hours or so of sleep and get out of bed after 6 hours.
Or is SleepyHead reporting some statistics about usage incorrectly?

Can you post last night's detailed daily report..just last night is sufficient for right now.
See this thread for how to post images along with some examples.
Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779
Need to see the leak graph as the statistics don't add up.
Also include the events graph and pressure graph and flow rate graph. Don't need the AHI graph on the right below the pressure graph. Turn it off in Preferences/Graphs tab.
Be sure to include the AHI event category colored bar graphs on the left.

[springman946]

what you need to do is use your cpap machine for 30 days for at least 4 hours per night to be compliant if you can use it for 8 hours a night that would be a lot better when I first got my cpap machine I was not using it enough and they took it away from me. the mnore you use it the more compliant you will be

[robysue]

Welcome to the forum, Good_Night_Sleep.

On paper, your therapy looks excellent: Your AHI is consistently very low. Your 90% leak rates are great. But you're not feeling any better. And you're not the only one who has gone through this.

So the question becomes: What else might be the cause of your on-going problems?

First: It's still early in your PAPing. Yes, I know you're a bit over a month in and you hoped you'd be feeling a lot better by now. But for many new PAPers it takes a couple of months before you start feeling any positive difference and for a few of us (including me) it takes a lot longer. And rather than a dramatic "wake up feeling fantastic" experience, most of us slowly improve over time. In my case, the first sign PAP was doing something positive started about 4 months after I started therapy. And I would have missed it if I had not been keeping a sleep log for insomnia problems: About 4 months after starting PAP, I started to wake up with no pain in my hands and feet several mornings a week. So the unwelcome adage of Give it more time is, unfortunately, a true thing you need to be aware of. If you just keep on PAPing, things should start to get better in the next month or two.

Second: PAP only fixes untreated sleep apnea; it does not magically fix bad sleep. And bad sleep can be caused by a lot of different things. You've had a lot of the usual suspects for "daytime fatigue" and "daytime sleepiness" checked out. But you may want to consider your sleep and PAP habits as well.

Notably your usage numbers look like this:

34 days of CPAP Data, between Tue Apr 29 2014 and Tue Jun 3 2014
Details Most Recent Last Week Last 30 Days Last 6 Months Last Year
CPAP Usage
Average Hours per Night 06:06 06:20 06:15 06:24 06:24
Compliancy 100% 86% 96% 97% 97%

So your average night time usage is just over 6 hours. And it could simply be that you need more sleep---as in 7.5 to 8 hours of sleep every night. That's what a typical adult actually needs in order to feel at their best. (But a lot of people don't get as much sleep as they need.)

So one suggestion: Try to get another hour of sleep every night. If getting to sleep is not a problem, go to bed a bit earlier. If possible, wake up a bit later. But try to block out a full 7 or 8 hour "sleep window" every night.

Next, consider your sleep itself: Are you waking up a lot during the night? Are you restless during the night? Are you thrashing around a lot in your sleep? Are you waking up much too early and having trouble falling back asleep?

And also think about these things: Do you have a pretty regular bedtime and wake up time? Or do you have a very different sleep schedule on the weekends? Or is your sleep "schedule" all over the place with bedtime (and wake up time) varying pretty widely from night to night?

And consider when you are at your sleepiest and when you are most awake: Are you a natural night owl living with a job that requires you to get up much earlier than you'd like to? Or are you an extra-early morning lark wishing you could stay up later to socialize with your family and friends? In other words, are you always ready to go to bed several hours much earlier than everybody else, but at the same time, you tend to wake up for the day at 5:00AM even if you don't want to?

And also consider whether you feel more or less restless when sleeping with the CPAP than you did before you started PAPing. For many newbies, there's a month or more at the beginning where the CPAP machine seems to cause more disturbances to the sleep than the untreated OSA did. There's a lot to learn to when it comes to sleeping with a six foot hose attached to your nose. And for some newbies, there's a lot of sleep disruption while they're learning how to sleep well with the machine.

And finally, there are people who continue to suffer severe daytime OSA symptoms even with optimal PAP therapy for their OSA. The reasons for this are not well understood; perhaps the damage the OSA has caused in the body is just too much to heal even over a long period of time. And for these people, stimulants like Nuvigil are often prescribed along with the nightly CPAP. So you're not alone in having a doc prescribe Nuvigil because the daytime sleepies and fatigue are not resolved even though the number of apneas and hypopneas is very low and the AHI is close to 0.

[robysue]

Welcome to the forum.

You say you have been using the machine over 2 months yet the data says 34 nights..did you skip some nights?

Pugsy,

The data period starts at the END of April and ends in EARLY June. There are only 36 days from 4/29 to 6/3. So the OP has not used the machine at all on probably 2 nights out of the whole data range.

[kteague]

Is there hope? Absolutely! It is far too soon and way too little discovery effort to declare defeat. Please do answer the questions already asked. Sometimes the simplest detail can hold the clue to your success. I was a late bloomer on CPAP, and my turnaround came when some perceptive forum members honed in on some details in my story that my doctor had not picked up on. Hopefully you'll find some relief too.

[ChasingSheep]

I am in very much the same situation as you, in terms of our diagnosis(mild apnea), our age, and the fact that we still feel like crap while on CPAP. As a matter of fact, I've been CPAP'ing since last March now, and there's still many days that I feel extremely tired and sleepy. Many a day(including today) I have questioned whether CPAP is doing more harm than good for me, but I've kept at it because there was a reason we all went to get a sleep study and discovered that we have this dreaded disorder. However, there are days when I feel great, somewhat rare, but it happens. Moral of the story is: Keep at it, a few months is an incredibly short time to gauge the success of your therapy. Keep tweaking and improving your therapy. Ask questions--there are a lot of helpful and knowledgeable people here.

Is there hope? I sure hope there is, for the both of us and everyone else. Wishing you the best.

[Pugsy]

The data period starts at the END of April and ends in EARLY June. There are only 36 days from 4/29 to 6/3. So the OP has not used the machine at all on probably 2 nights out of the whole data range.

I see that now. I was just going by this statement that she said initially

I have been using the cpap machine for over 2 months and notice no difference in my symptoms.

and just saw the 34 days of use and didn't go down to the dates section other than glanced and saw PR S1 model.
I guess it just seems like 2 months but was only a month.

The 90% leak numbers don't make sense...It should include Total Leak with vent rate and even if a 90% number I would think it needs to be much higher given stated pressures.. I need to check with Mark about this new value added to statistics page.

to GoodNightSleep....
Without seeing the detailed report the only thing that stands out to me is hours of use.

6 hours isn't much and even now if I only get 6 hours of use my butt is dragging the next day. I need 7 1/2 to 8 hours or I get sleepy the next day.
I know some people do fine with 6 hours but maybe in this situation more is needed...and maybe some sleep is being got without the machine.

Also I wonder...do you take any meds of any kind?
Also...the 6 to 6 1/2 hours you do get...do you wake up often?
Do you ever sleep without the machine? Take the mask off and go back to sleep?