How long until I see improvement?

[SnorkelPuss]

Hi All,
I'm new to the group and was referred here from another group. I hope you can help because I'm about to blow a gasket!
After using an oral appliance for a few months and not feeling better, I am now on CPAP. Using The ResMed S9 Autoset with humidifier. I’ve been using it for about 1 month. Not settled on a mask yet. I have a new one that arrived today that I am looking forward to using (believe it or not). This will be mask #4. I am just so frustrated because so far I feel no better but according to the statistics on my machine I should.
I have a follow-up appointment with the MD on 11/6 but in the meantime I called them and talked to the Nurse Practitioner. She seemed not to know what to do with me except for throw stupid suggestions at me. I am concerned that something more is wrong and that they are not paying attention. I am taking Nuvigil and some days I could still fall asleep standing up. A few days ago they changed the pressure from 10 to 12. Today I feel ok but still pretty crappy but not as crappy as yesterday. Is that any way to live? If anyone can pipe in with comments or advice I would appreciate it. I feel like I am going to lose it. Thanks in advance.

QUESTIONS:
How do I know if something else is wrong with me if this doesn’t work?
How long should it take until I feel better?
Am I ever going to feel normal? (I’m not sure I even know what that would feel like but I think I’d recognize it when it happened)
I had a split study using my oral appliance one half of the night and CPAP the other half. According to my stats on the study they are very similar but is my sleep architecture normal? Does anyone know? and should'nt I have felt okay with just the oral appliance according to these stats?
11:58 PM-3:04 AM 3:02 AM - 6:05 AM
Oral Appliance CPAP
Time In Bed (TIB) 184 Minutes 183.5 Minutes
Total Sleep Time (TST) 171 Minutes 163.5 Minutes
Sleep Efficiency TST/TIB 93% 89%
Sleep Onset Latency 3 Minutes 14 minutes
Wake After Sleep Onset 9.5 Minutes 5.5 minutes
REM Latency 109.5 Minutes 101.5
Stage N1 3% 3%
Stage N2 24% 39%
Stage N3 (Slow Wave Sleep) 39% 20%
REM 34% 38%
Supine Position 100% 100%
OSA 0
Central 1
Mixed 0
Hypopnea 8
RERAS (Respiratory Effort Related Arousals) 3
Overall AHI (Apnea/Hypopnea Index) 3/hr 0
RDI (Respiratory Disturbance Index) 6/hr 0
Oxygen Sat SpO2 96% 96%
SpO2 nadir 92% 93%
Arousals 6/hr 8/hr
PLM None None

[AHI15]

[edit] ... and some days I could still fall asleep standing up. ... I feel like I am going to lose it. Thanks in advance.

You are not alone.

The short of it is that some of us get better quickly from CPAP, some of us get better slowly, and some of us don't get better. There is no way to find out in which category we reside without giving it a serious shot, so at this point you'll just have to hang in there, work on making the treatment function correctly, and wait enough days and weeks until it is possible to make a conclusive statement about whether a trend toward improvement has developed or not.

QUESTIONS:
How do I know if something else is wrong with me if this doesn’t work?
How long should it take until I feel better?
Am I ever going to feel normal? (I’m not sure I even know what that would feel like but I think I’d recognize it when it happened)

These are my questions too. I was told by my sleep Drs. at Stanford after 45 days of very successful CPAP treatment that they were now growing concerned that I didn't feel at least a little bit better, and that I should begin to explore other possibilities, such as something which can be picked up by blood work (I've been through plenty of that which came up with nothing--but thanks to this group learned of tests which should be done which the Drs. never ordered!), CFS or DSPS.

They said that if I am under successful CPAP treatment for 6 months and still don't feel better, then they would be certain something else was wrong. That could be another sort of underlying sleep disorder, or something else entirely.

It is also possible, given the current state of very incomplete medical science on the human body, that we can have things wrong which simply can't be diagnosed. But we shouldn't dwell on that until we're certain that it isn't something which can be diagnosed and treated.

Good luck, focus right now on getting CPAP to work consistently, and hang in there!

[Todzo]

Hi All,
I'm new to the group and was referred here from another group. I hope you can help because I'm about to blow a gasket!
After using an oral appliance for a few months and not feeling better, I am now on CPAP. Using The ResMed S9 Autoset with humidifier. I’ve been using it for about 1 month. Not settled on a mask yet. I have a new one that arrived today that I am looking forward to using (believe it or not). This will be mask #4. I am just so frustrated because so far I feel no better but according to the statistics on my machine I should.
I have a follow-up appointment with the MD on 11/6 but in the meantime I called them and talked to the Nurse Practitioner. She seemed not to know what to do with me except for throw stupid suggestions at me. I am concerned that something more is wrong and that they are not paying attention. I am taking Nuvigil and some days I could still fall asleep standing up. A few days ago they changed the pressure from 10 to 12. Today I feel ok but still pretty crappy but not as crappy as yesterday. Is that any way to live? If anyone can pipe in with comments or advice I would appreciate it. I feel like I am going to lose it. Thanks in advance.

QUESTIONS:
How do I know if something else is wrong with me if this doesn’t work?
How long should it take until I feel better?
Am I ever going to feel normal? (I’m not sure I even know what that would feel like but I think I’d recognize it when it happened)
I had a split study using my oral appliance one half of the night and CPAP the other half. According to my stats on the study they are very similar but is my sleep architecture normal? Does anyone know? and should'nt I have felt okay with just the oral appliance according to these stats?
11:58 PM-3:04 AM 3:02 AM - 6:05 AM
Oral Appliance CPAP
Time In Bed (TIB) 184 Minutes 183.5 Minutes
Total Sleep Time (TST) 171 Minutes 163.5 Minutes
Sleep Efficiency TST/TIB 93% 89%
Sleep Onset Latency 3 Minutes 14 minutes
Wake After Sleep Onset 9.5 Minutes 5.5 minutes
REM Latency 109.5 Minutes 101.5
Stage N1 3% 3%
Stage N2 24% 39%
Stage N3 (Slow Wave Sleep) 39% 20%
REM 34% 38%
Supine Position 100% 100%
OSA 0
Central 1
Mixed 0
Hypopnea 8
RERAS (Respiratory Effort Related Arousals) 3
Overall AHI (Apnea/Hypopnea Index) 3/hr 0
RDI (Respiratory Disturbance Index) 6/hr 0
Oxygen Sat SpO2 96% 96%
SpO2 nadir 92% 93%
Arousals 6/hr 8/hr
PLM None None

Hi SnorkelPuss!

I do not have any answers for your questions other than to than to say your that normal architecture is N1-1%-5%; N2-<50%; N3-20%-25%; REM-20%-25%.

The last time I checked PAP is abandoned by 50% of the people who start it at one year.

To give it the best chance of working I would:

Rig to use the PAP data. There are many good people here to help you with that. Start with taking down the data about your machine.

Keep asking questions here.

I think it best to not depend upon a single “mechanical splint” to heal me. I did not take care of my body, it rebelled.

I think one thing that might help you right now is to take some long walks if possible.

1. It reduces stress, and stress will make any disease worse (well, too much stress anyway).
2. If some of it is applied as Aerobics (and perhaps interval training) I have noticed that this helps my breathing reflexes to deal with the extra pressure from PAP.

May we find better health!

Todzo

[Slartybartfast]

What Todzo said. Everybody's different. I seem to be one of the very few that had an immediate, i.e. next morning, dramatic, complete turnaround, took to CPAP like a duck to water, etc. However, as I have hung around here over the last 2 years I realized that I am in the minority. But my problem was a simple one. I was choking on my own throat every time I fell asleep.

Many physical and psychological conditions touch on the quality of your sleep; having a sleep study and getting on the hose isn't a panacea. Looking at your numbers from the split study :no OAs, one apnea, a few hypopneas, with acceptable SPO2, RDI zero and AHI of zero, all while lying supine indicate obstructive sleep apnea isn't causing your problem. So your sleep doc (I hope you're not left in the hands of a nurse-practitioner) needs to look deeper. Bloodwork, complete physical, perhaps the problem could be one of anxiety feeding on itself.

Sorry I can't be of more help.

By the way, I presume the numbers you gave were from the split study. What were your numbers from your first diagnostic study?

[Goofproof]

First and formost, Your machine collect full data, get the software and use it. Until you get the data you don't even know if you are using it to your advantage, too high a leak rate stops the treatment from being effective. You have went from the lead standard of treatment to the gold standard, but you have to get that tuned in to reap the Gold.

Your body didn't get worn down over night, repair will more than likely come slower than you want, but the damage will also be less from now on. Good luck, you get out of life what you are willing to put into it. Jim

[archangle]

Welcome to the forum. Sorry you had to join us.

Unfortunately, many of us need to manage our CPAP therapy ourselves. Most of the medical mafia only cares about selling you stuff and collecting fees.

Fortunately, you have an excellent CPAP machine that records a lot of data and will give you a really good idea if there are "mechanical" problems with your therapy. I say "mechanical" in that it will tell you whether you stop breathing, how often, etc.

Get the free SleepyHead or the ResScan software and read the data the machine records on the SD card. You can figure out whether you're still having apnea, etc. It can also help you figure out problems and get the best therapy possible.

Once you reduce your apnea as much as possible, you can deal with the questions of what happens long term.

Some people get immediate relief, some take weeks or even months. Some people never feel better, but should still do CPAP because apnea will kill you slowly if untreated.