[Health] Extremely fatigued even after 2 months of CPAP

[Dormeo]

I'm so sorry to hear about all you're going through. This must be an incredibly rough time.

Did the rheumatologist run other autoimmune tests, or just the ANA? It's true that ANA levels can be elevated in the absence of autoimmune disease, but elevated levels for a person experiencing fatigue should lead to follow-up testing that might reveal an unsuspected process.

Have you had tests for the other conditions I mentioned?

Meanwhile, when you have a chance, post another chart, per Expat's specifications. Let's at least see whether we can help you do as well as possible with PAP.

[books456]

The only settings I see at this early stage is min pressure 7, EPR 3, and leave max pressure at 10.

Hi, I’m having a really hard time trying to adjust to a higher pressure. I’ve been trying to sleep for 2 nights with the settings you recommended but the higher pressure is irritating my sinuses and causing me to have pretty bad bloating. I tried using Gas X Max but it didn’t help. Should I try to the settings again tonight? Or I was thinking of adjusting them to a min of 6 and a EPR of 1 but idk if that would be helpful.

Also I called both my PCP and sleep doc. The soonest I can see my sleep doc is June 22nd and I’m waiting for them to get approval from my insurance to do another sleep study. I have a phone call appointment with my PCP tomorrow, I will ask her about running some more tests to rule out any other medical issues. I’m also trying to find a rheumatologist for a second opinion regarding having an autoimmune disorder, a endocrinologist for my PCOS and I’m trying to see if there is any other sleep docs who accept my insurance who can see me sooner than June 22nd.

[Expat31]

Hello,


I have read all your posts and fully understand the difficulties you are having to deal with. Let's take a look.

It would be a great help if you could post at least one full night's graphs, at a pressure that is more or less tolerable for you. (No zooming please). In just the standard format 5 graph format.

Maybe minimum 5 as before, maximum 7? Just a guesswork at this stage, but it would be a start and give us at least something to work with, and improve upon, when we can look at the other variables.

In the meantime I will detail what I have been able to glean glean from the graphs you have already  sent.

You have some pretty nasty apnea "clusters" that are really impacting your quality of sleep.

The machine's algorithm cannot function correctly in this environment, and from personal experience, can provoke central apneas, that may be real, or "false flags" But certainly causes the machine to malfunction.

The above phenomenon is called "Positional sleep apnea"and cannot be treated by machine pressure changes alone.

Your sleep study should give some clues on this, as generally it shows the breakdown of apneas between back sleeping, side sleeping, and other positions. Very often back sleeping is the main culprit. (You may wish to post your study with your personal details redacted.)

There are several possible causes, and solutions, such as simply not sleeping on your back, or a soft cervical collar to straighten out the trachea if this is the issue.

It depends, as each person is physically different.

In summary, let's get a look at your data with pressure you can tolerate as a good starting point, together with your sleep study if possible. Centrals later.

Thanks

[Dormeo]

I agree with Expat31 that you should revert to settings that are more comfortable for you and then post a chart.  You might also play around with the humidity to see whether that helps your sinuses.  For some people, their sinuses want more humidity; for others they want less.

I'm not inclined to think your clusters of CAs are positional in nature, though if they were obstructive I'd agree.  I suspect that they arise from arousals.  Arousal breathing occurs when we wake up or when we move from a deeper level of sleep to a shallower level.  Some arousals are very brief, and there are many that we aren't really aware of and don't remember.  

Arousal breathing typically involves deeper inhalation and exhalation, and this washes out more CO2 than regular sleep breathing.  With less CO2, your "breath now" neurochemical mechanisms take a pause until the CO2 level builds back up and triggers a breath.  If the pause is 10 seconds or longer, it's scored as a CA.  Sometimes the breathing after the CA pause is also deeper, which starts the process over again.  This kind of unstable breathing can persist for a while.  

This may well be "treatment-emergent" central apnea, where the more efficient breathing we enjoy with PAP contributes to the CO2 washouts.  With time, a lot of treatment-emergent central apnea abates on its own, as the body adjusts to the new regimen.  And with time, you may well have fewer arousals and thus fewer occasions for starting the pattern.

You can zoom in on your CAs to see whether you see the pattern of arousal breathing and waxing/waning cycles.  I'm attaching examples from my own charts of CAs after an arousal.  Arousal breathing tends to look rattier than sleep breathing, as well as deeper.

[books456]

In summary, let's get a look at your data with pressure you can tolerate as a good starting point, together with your sleep study if possible. Centrals later.

Ok, I've attached my Oscar data from May 8th. My min was 6, max 10 and was EPR 1. The reason why I'm using that data instead of May 9th or 10th is because for the last 2 days, I haven't been sleeping well. I've been having both a hard time falling asleep and staying asleep, even though I feel dead tired. I'm prescribed 50 mg of Trazodone for sleep, and I usually take 300 mcg of melatonin with it if I can't sleep, it helps but the next day I'm groggy so I'm apprehensive about using it. I also have 25 mg of hydroxyzine for anxiety that I could take at night if I want but that also leaves me groggy in the morning. I called my psychiatrist today and left him a voicemail about the issue but I'm waiting to hear back from him. Sorry about the 2 screenshots, I've been having a super hard time trying to position everything to fit in only 1 screenshot, I have a Lenovo Ideapad 330 laptop and for some reason I'm having a difficult time taking screenshots on it. I'll prob have to use my desktop computer instead but I'll have to wait for my SD card reader to be delivered.

I'll have to find the results of my initial sleep study, the sleep center that I go to is super old fashioned and the results were on a sheet of paper as opposed to being emailed to me. If I can't find it, I'll just ask them for a new copy. They also need prior authorization from my insurance to have me do another sleep study to check for treatment emergent central sleep apnea, I told them that, but they never got back to me. I plan on calling them tomorrow about it. I'm trying to find a better sleep practice to go to, but all the other ones in my area are booked out for at least 6 months or more for an appointment or sleep study. 

On the My Air app, it says I had 4.8 events per hour on May 8th. My overall score was 97/100

[Dormeo]

Somehow the attachment isn’t there.

[books456]

Is it there now? I just readded it, I had to edit it since it showed my first and last name lol

[Expat31]

Yes, I've just seen it, been out of the house busy, and now battling to get air tickets for next week to visit family in US. Will look at tomorrow.

[Expat31]

Hi again,

I am sorry with all the difficulties you are having, and in addition having to grapple with computer problems.

I have a hunch that your centrals are impacted by your medicines, but again this is just a hunch. Professionally medical help is really needed here.

Regarding your graphs, there is not a lot to go on at the moment. 

Finding a machine pressure that you can tolerate and is relatively comfortable is really the starting point. Finding  a baseline so you can start to use the machine. 

What you may want to try is to lie in bed with your mask on, (anytime during the day) and chose a maximum pressure, say 8 CMS of water. 

Start the machine up, watch the dial with the pressure slowly building up,  5, 6,7,8. From this try to get an idea which figure is the most comfortable. (The screen my go on energy saving, but press the central radio button to wake it up). 

If say 8 is the right level, stop the machine, and reset the minimum and maximum to 8. Then start the machine again with this "fixed" pressure for maybe half an hour or more if you can. If  this tolerable, OK, If not, go down to 7,  then 6 etc. (Probably EPR off).

Give it a try. It may work. Then try a night with this. It's all trial and error, and see what happens.

Hang on in there.

[books456]

Ok I’ll try it. So my minimum and max should be the same, fixed number? Also  what meds would cause me to have central sleep apnea events? I mainly use the Trazodone and melatonin for sleep. Would my Hydroxyzine be ok or could that possibly cause my centrals as well? Should I ask for a lower dosage of Trazodone or just switch meds altogether? 

I also had a hard time sleeping again. I woke up after only 4 hours and couldn’t get back to sleep. That’s 3 nights in a row