Has it taken anyone a long time to start feeling better?

I've been on cpap over 6 months now... took to it quickly. I usually sleep 8+ hours with it nightly. AHI below 1 most of the time, decent mask fit. The only real positives I've had so far is not getting up during the night to urinate and my hematocrit has lowered (has been over range). I was so optimistic that it would help with daytime energy, depression and weight. Unfortunately I am still super tired during the day, depressed and since cpap have actually gained 13 lbs (now at my highest weight ever). I do have Hashimotos thyroid disease and possibly fibromyalgia according to my GP (more likely chronic fatigue IMO).

One reddit user said it took 2 years on cpap to find the benefits I am seeking. Has anyone here had that experience?

What are your pressure settings?

MO Gal wrote: ↑

Sun Feb 26, 2023 9:41 pm

One reddit user said it took 2 years on cpap to find the benefits I am seeking.

At best that's a weak syllogism:

I felt bad so started CPAP.
I felt better after 2 years.
CPAP works but it takes 2 years.

The amount of variables is astronomical! How bad is bad? How much better is better? What's the underlying issues? Are more problems starting? Is treatment effective? Is the treatment creating more problems than benefits?

Severe OSA with an underlying sleep debt will have remarkable improvement in days. Some overnight (see REM Rebound). After that, you have to consider the innumerable amount of variables coming into play.

What's your current weight? Ever have a PFT and ABG (if you had polycythemia something was wicked)?

Throw up a SleepHQ night to (try to) see what your sleep quality looks like. Too bad you don't have a Respironics machine, we could look at Variable Breathing.

For 15 years, the only improvement I have gotten from CPAP is the AHI number. It mostly stays <5 so I guess CPAP is a good thing. Issues other than apneas keep me from sleeping well.

I knew it was working the morning after my second sleep study--the first one on cpap.
When they woke me, I thought it was much later than it was--I was that rested.
Gradually, I noticed fewer colds, better concentration, and more energy.
A year later, I skipped one night. I don't want to do that again.

Pressure setting is 14 maximum I think. I use a SD card in my cpap and have no way to get the info here with my laptop. Sleep doctor said everything looks great, I take the card in every 3 months for them to read.

Before I started I read through the entire 'success stories' thread here and I guess I got my hopes up for some miracle a lot of users seem to have. I'd like chunkyfrog's results!

No PFT or ABG testing (both are lung tests??). Weight is 250. Thankfully I am tall. Have been seeing hematologist for the polycythemia for over 2, maybe 3 years (even though it was high as far back as 2014, but doctor never mentioned it). Most likely it is secondary polycythemia... caused by sleep apnea?? If the next few blood tests keep showing the hematocrit as normal I'll assume that was my issue.

MO Gal, the OP writes:

MO Gal wrote: ↑

Sun Feb 26, 2023 9:41 pm

One reddit user said it took 2 years on cpap to find the benefits I am seeking. Has anyone here had that experience?

Rubicon responds:

Rubicon wrote: ↑

Mon Feb 27, 2023 6:14 am

MO Gal wrote: ↑

Sun Feb 26, 2023 9:41 pm

One reddit user said it took 2 years on cpap to find the benefits I am seeking.

At best that's a weak syllogism:

I felt bad so started CPAP.
I felt better after 2 years.
CPAP works but it takes 2 years.

The amount of variables is astronomical! How bad is bad? How much better is better? What's the underlying issues? Are more problems starting? Is treatment effective? Is the treatment creating more problems than benefits?

Severe OSA with an underlying sleep debt will have remarkable improvement in days. Some overnight (see REM Rebound). After that, you have to consider the innumerable amount of variables coming into play.

I want to talk about my own experience, both as an answer to MO Gal's original question and also in the context of Rubicon's comments.

In July 2010 I did a sleep study at the request of my husband who had witnessed apnea episodes and who had noticed my snoring growing worse as was the frequency of his witnessing my apnea episodes. But I had no real daytime sleepiness and the fatigue I felt was easily explained by being a working mother getting up earlier than I wanted to (i.e. around 6:30-7:00 AM) in order to make sure the teen-aged kids in the house got off to school on time and a real problem with getting to sleep any earlier than 12:30 or 1:00. I also was waking up with oddball pain in my hands and feet that I would describe to my husband as, "It feels like I slept with my hands and feet in fists all night." This hand and foot pain had been written off as very mild osteoarthritis by my PCP.

My sleep study showed moderate obstructive sleep apnea: I had an AHI = 23.1, but almost all of my events were classified as "hypopneas with arousal"---i.e. they were scored because I had an EEG arousal rather than a 3% or 4% O2 desaturation.

When I started CPAP in September 2010, I had a truly horrible crash & burn: For the first 4-6 months of PAPing, I felt substantially worse while PAPing that I ever felt before I started PAPing. I went from having no real daytime sleepiness to feeling like I was going to fall asleep while driving. This was a serious worry---I took to having my husband drive me everywhere, including to and from work each day. I felt horrible and I looked like a zombie. And a significant part of why I felt so bad was that I had substantial and serious problems learning how to sleep with the machine.

My biggest problems were sensory overload from the novel experience of wearing the mask, severe aerophagia on most nights, and an inability to get to sleep and stay asleep while using the machine. I was posting here regularly at the time, and some of my posts were basically whining asking the same question as MO Gal: Was there anybody out there who had a bad of a time adjusting as I was having?

In an earlier incarnation, Rubicon asked the same pertinent questions that he's hinted at here: What's the underlying issues? Are more problems starting? Is treatment effective? Is the treatment creating more problems than benefits?, along with the very important question: What did I want/expect CPAP therapy to do for me?

One of my underlying issues was plain old sleep on-set insomnia that I'd more or less controlled, but "control" meant I still had a sleep latency of 45-60 minutes on most nights. And as soon as I started CPAP, the insomnia exploded, along with the aerophagia. But I was stubborn (too stubborn some people were telling me) about trying to make CPAP therapy work for me: I knew what kinds of health risks are elevated when one has untreated OSA and I knew that several of them run in my family. And my goal at the start was to minimize the risk of developing many of those OSA-related health problems that run in my family.

But the questions of What's the underlying issues? and Is the treatment creating more problems than benefits? were extremely relevant in my case. The aerophagia issue was addressed a couple of months after I started CPAPing when the PA who was in charge of my treatment suggested a switch from APAP to BiPAP. And the (first) titration study for BiPAP revealed the true magnitude of my insomnia problem, not only to the PA, but also to myself: When asked I was asked how much sleep I got during the titration study, I honestly answered that I though I had gotten between 3 1/2 and 4 hours of sleep. The test revealed that I'd gotten less than 2 hours of sleep. In other words, the insomnia issues had to be fixed before I could ever benefit from xPAP therapy.

And that started what I refer to as my First War on Insomnia. With the help of the PA, I did several months of CBT-I. One part of that CBT-I was keeping a sleep log that required me to jot down a few notes about how I felt right after waking up each morning. As the sleep restriction schedule and the strict wake-up time and other behavior modifications kicked in and allowed my body to start falling asleep much more rapidly and wake up far fewer times, I started to notice the phrase, "Woke up with no hand/foot pain this morning" appearing in my sleep log several times a week. A few weeks later, since I was waking up pain free most day, I switched to only commenting on hand/foot pain on those rare occasions (less than once a week at the time) when I woke up with hand and/or foot pain. The PA who was treating me and I concluded that the hand and foot pain was most likely caused by my clinching my hands and feet during sleep as a result of all the cortisone being released by my body in response to the apneas and hypopneas of my untreated apnea. (I.e. a "fight or flight" response to the breathing problems). And as my body finally started sleeping reasonably well with BiPAP, the cortisone levels reduced and the clinching ended.

With that one seemingly small change in how I was feeling, my whole "goal" of PAPing changed: Rather than PAPing primarily to prevent potential serious health problems from occurring, the goal became waking up pain-free. I really had not realized just how much chronic, but low level pain had been affecting my life until that pain disappeared.

So my points: Rubicon asks important questions that have to be answered when a person with OSA is not responding as expected to xPAP therapy. Whatever problems with leaks, aerophagia, sensory overload, etc. the person is dealing with have to be addressed before xPAP can possibly work. But so do all the other issues that might be creating the daytime sleepiness and/or fatigue the person is experiencing. CPAP fixes sleep disordered breathing, but it doesn't fix bad sleep if that bad sleep is aggravated by things other than sleep disordered breathing. In my case, my aerophagia problems had to be addressed (by the switch to BiPAP) and my insomnia had to be fixed (by CBT-I) and my over-sensitivity to all the sensory stuff from the CPAP had to be resolved (by time) before I could start feeling better than I did before I started CPAPing.

Other people? They need to address whether any of their other medical conditions and/or them medications they take for those conditions may be causing problems with sleep or daytime drowsiness or daytime fatigue. They need to make sure they are not doing things that tend to decrease the quality of sleep. (Too much caffeine and/or too much alcohol for example.) They need to consider whether things like pain are causing sleep problems.

In short, if you have OSA, but CPAP doesn't seem to be helping, you've got to consider what else might be causing your problems and you need to address them in addition to continuing to use CPAP to keep the untreated sleep disordered breathing from adversely affecting your sleep.

MO Gal wrote: ↑

Mon Feb 27, 2023 6:56 pm

Pressure setting is 14 maximum I think. I use a SD card in my cpap and have no way to get the info here with my laptop. Sleep doctor said everything looks great, I take the card in every 3 months for them to read.

There are two relatively straight forward ways of getting us the data from your laptop.

1) If you have OSCAR installed on your laptop, take a screen shot and then upload the screenshot to an image sharing site like imgur.com. And then link to the image from here. If you use an image tag in your post, the image will even show up here.

2) If you don't want to install OSCAR, you can also create a free account at SleepHQ.com and upload the data to that site. Then you can share a link to the day's data you want us to see by posting the link over here.

Before I started I read through the entire 'success stories' thread here and I guess I got my hopes up for some miracle a lot of users seem to have. I'd like chunkyfrog's results!

All of us who have a tougher than normal time adjusting wish we were like my husband: First night he used the machine, he had the energy to get through the whole day without yawning and was able to stay awake for his favorite tv show that night.

Hate to be a bore, but what is your min. pressure setting - it's the one that does the job more so than the max... and if the min. is too low - e.g. 4 - you'll have trouble (most do at that low machine default setting) so raise it to e.g. 6 or 7.

MO Gal wrote: ↑

Mon Feb 27, 2023 6:56 pm

Pressure setting is 14 maximum I think. I use a SD card in my cpap and have no way to get the info here with my laptop. Sleep doctor said everything looks great, I take the card in every 3 months for them to read.

are you saying your laptop has no sd card reader?

if that's the case, you can get a card reader that will plug into the usb slot in your computer.

good luck!

MO Gal wrote: ↑

Mon Feb 27, 2023 6:56 pm

Thankfully I am tall.

How tall? More than 6'4"?

In your lab work, do you have an -HCO3 or Total CO2 Content?

Robysue1, thanks for sharing your experience.

Whatever problems with leaks, aerophagia, sensory overload, etc. the person is dealing with have to be addressed before xPAP can possibly work

I fall asleep fairly easy most nights and stay asleep except for the few moments it take me to roll over and change positions a few times a night. No leaks, aerophagia, sensory overload that I'm aware of. I'm not sleepy during the day... just fatigued. I agree the fatigue could be from something else. Been going from doctor to doctor for over 20 years.

One thing I didn't mention is that in the home sleep study... my Oxygen dropped to 79 for over 50 minutes I believe. Will CPAP help raise that without supplemental oxygen?

Not sure what the minimum air pressure is.. will have to get my book out, but I think it is 4. Will raise it if it's less than 6. Thanks.

I do know there is a SD card adapter I can buy... just haven't done it yet.

Rubicon - I know I am fat. Was just saying I'm glad I'm 5'10" and not 5' at my weight.

MO Gal wrote: ↑

Tue Feb 28, 2023 6:07 pm

I do know there is a SD card adapter I can buy... just haven't done it yet.

i urge you to do so, sooner rather than later. once the amazing people on this forum can see that data, they can give advice on how to improve your therapy so that you can start feeling better.

good luck!

MO Gal wrote: ↑

Tue Feb 28, 2023 6:07 pm

One thing I didn't mention is that in the home sleep study... my Oxygen dropped to 79 for over 50 minutes I believe. Will CPAP help raise that without supplemental oxygen?

It really depends on whether obstructive sleep apnea is the only reason you have O2 desats. If you don't have any other issues that could be causing desats, then once your apneas and hypopneas are being prevented by xPAP, you should not have any serious desats. But there are other medical conditions that can lead to O2 desats.

Not sure what the minimum air pressure is.. will have to get my book out, but I think it is 4. Will raise it if it's less than 6. Thanks.

So you do know how to get into the clinical settings. That's good.

I do know there is a SD card adapter I can buy... just haven't done it yet.

SD card adapters are not expensive. Make the time to buy one so you can start looking at the detailed data in Oscar.

In your original post you write:

MO Gal wrote: ↑

Sun Feb 26, 2023 9:41 pm

The only real positives I've had so far is not getting up during the night to urinate and my hematocrit has lowered (has been over range).

Don't poo-poo those very real positives: For many of us, there is incremental improvement in how we feel, and the fact that your hematocrit has been lowered says with the help of the CPAP, your body is starting heal from the very real damage your untreated OSA was causing.

I was so optimistic that it would help with daytime energy, depression and weight.

CPAP is not a magic pill that fixes problems with depression and weight. CPAP only fixes sleep problems directly caused by untreated OSA, and so CPAP only fixes problems with daytime energy that are directly tied to the effects of untreated OSA.

And you also write:

Unfortunately I am still super tired during the day, depressed and since cpap have actually gained 13 lbs (now at my highest weight ever). I do have Hashimotos thyroid disease and possibly fibromyalgia according to my GP (more likely chronic fatigue IMO).

I think you need to have a long chat with the doc treating the Hashimotos thyroid disease. You need to find out whether the Hashimotos could be a continuing cause of your daytime fatigue and possible weight gain. You also need to work with your GP to sort out whether you do have fibromyalgia or chronic fatigue, either of which would explain your on-going symptoms of daytime fatigue.

And you might also want to have a long talk with your GP about the depression: Is the depression so severe that it is a direct contributor of your continuing daytime fatigue and lack of energy? If so, it's worth asking both yourself and your doctor whether the depression is severe enough to be worth treating, and if so, what would be the best way to treat it.

Good luck with your continuing journey and your continuing effort to get to the bottom of your health problems and work towards recovery.

MO Gal wrote:Was just saying I'm glad I'm 5'10" and not 5' at my weight.

Height, weight, and sex are used to determine BMI. Yours calculates at 35.9. Hang onto that.

One thing I didn't mention is that in the home sleep study... my Oxygen dropped to 79 for over 50 minutes I believe. Will CPAP help raise that without supplemental oxygen?

There is simply not enough hard data to offer to any help.

If

Oxygen dropped to 79 for over 50 minutes

then Time <90% could easily have been the entire night. With BMI > 35 (although really need the PFT to look at several parameters) there may be less OSA and more OHS (obesity hypoventilation syndrome), CPAP may only be marginally effective (not cause it chases respiratory events but because it improves FRC) and arbitrary use of oxygen will probably worsen the situation (even more eye-glazing discussion regarding V/Q mismatch). Add in hypothyroidism, which in itself can cause respiratory failure...

BiPAP BiPAP BiPAP BiPAP BiPAP BiPAP BiPAP BiPAP

I love saying that.

Well maybe BiPAP depending on what the data reveals.

Anyway without hard data it's like throwing darts blindfolded in a dark room that somebody removed the dartboard.

In.