I'm unconvinced

[Timur]

Forums like this and others exist is because it is hard to adjust to CPAP. Not only are we often sent off with absolutely the wrong settings, but we are also sent off with next to no emotional support. It IS hard and when folks say it isn't they are simply the lucky ones for whom it was easy.

We are all here for each other for this very reason. 

I had a very rough start and my approach was to see CPAP as  a very good friend, an ally in my life. Almost 3 years on and it truly became a self fulfilling prophecy. 

I sometimes think the longer we use this the more we forget those early days, the initial struggles, the grieving of the loss of sleep like it used to be. 

That said,  new folks need to trust those of us who have been there, done that. It does get better. It really does. Much like all the hard things we have to do in life, like maybe giving up smoking, or quitting a bad relationship ... it is worth the adjustment.  

The most important thing to do is to make sure that you take complete charge of your treatment from the very start. By this I mean use Sleepyhead and make sure you settings are optimal. Does your mask fit you properly and is it the right one for you? 

There are multiple pieces to this puzzle of adjustment to CPAP, some easy to fix and others much more complicated and related to how you personally deal with things. Mobilize your inner resources to figure it out, as the the approach will be unique for each of us. For me it was to focus entirely on the positive and to see it as a personal challenge.

[Fats Drywaller]

In the meantime, it sounds like I should adjust the pressure to a tighter range than the 8-20. When I've checked it in the night the numbers seem to range from 8-11. I have not been bothered by (don't sctually notice) the air pressure. I do notice the sound of the air, but I think it's the venting that I hear.

Sorry, I probably shouldn't have mentioned it, and it's just an example of how I'm not an expert on pressures. Having the range extend too much on the high end shouldn't cause a problem with a good machine that has reasonable APAP algorithms (Resmed and Philips among others), because the algorithm will go into the highest range only if it thinks there's a need. What I had in mind was the case where the low is set too low and the patient is starved for air as a result. However, if your machine is staying in 8-11, that sounds fine and no adjustment should be needed.

The main thing if you ever need help with the pressures from the folks here who are experts is that you'll need the Sleepyhead charts based on the machine's full data from the SD card. If so, I promise to stay out of that discussion.

Timur's point about "the lucky ones for whom it was easy" is a good one. I guess my own case is so average that I don't pay enough attention to that tail end of the bell curve where the patients really are struggling to put up with CPAP.

[Fats Drywaller]

I sometimes think the longer we use this the more we forget those early days, the initial struggles, the grieving of the loss of sleep like it used to be. 

Good post!  All excellent advice.  "Take complete charge of your treatment" is right.  About the loss of sleep like it used to be, I think what gets to a lot of new CPAP patients is that big change, just the fact that it's not feasible to continue with one's old habits in that regard (and it never will be again!).  When we start out, we are told by the experienced folks that restful sleep will come back after the initial acclimation phase, and that's true.  But for those of us who are used to it, it's easy to overlook that it's still a huge change.  The other day I mentioned once again sleeping "as if I were a kid", but when I was a kid I would have been horrified at having to use the mask & machine every night.  At this late date, I don't even think twice about it, just take it for granted, like wearing eyeglasses the other 16 hours per day.

But the good news is that newbies can still take heart that the beneficial deep sleep will come back!  What's the catch?  Well, um, it's just that you'll need to have this weird device clinging to your face all night ...

Sort of like Ford Prefect to Arthur Dent:

Arthur:  "So what do I do?"

Ford:  "You come along with me and have a good time.  You'll need to have this fish in your ear."

Arthur:  "I beg your pardon?"

(Hitchhiker's Guide to the Galaxy, BBC radio series, episode 1)

[SarcasticDave94]

<One other piece of data we like to see are your Sleep Study(s), so please post them, sanitized of personal data of course.  Your original Sleep Study will tell us what was going on, what type of Apneas and how much of them you have before CPAP and give us confidence that the AutoSet is the correct machine for you.>

The "sleep study" was conducted at home, and I only had that contraption on for a couple of hours beforeb removing while asleep. I didn't meey with a doctor before or after the study. I guess those factors contribute to my skepticism about the apnea diagnosis and treatment. I hope you can read the attached—now that I look at the numbers I see that they don't look too terrific. Ah, denial!

I won't be able to get to the software end of things until early next week. In the meantime, it sounds like I should adjust the pressure to a tighter range than the 8-20. When I've checked it in the night the numbers seem to range from 8-11. I have not been bothered by (don't sctually notice) the air pressure. I do notice the sound of the air, but I think it's the venting that I hear.

Again, thank you all for your patient assistance. This is a difficult ride, and I appreciate the company.

I wonder how that area of Egypt supports so many apnea sufferers. Living near Denial must be getting pretty crowded by now. (I used to live there too, but eventually I moved out.)

[SarcasticDave94]

Later in '17, I talked with the nurse in office at the pulmonary doc's office to discuss why BPAP was not for me and why ASV was. Another sleep study and another machine, called the ASV, was then in the works.

I'm pretty new to this also - so forgive my ignorance but what is ASV?

My apology on that.

ASV stands for Adaptive (or auto depending on who's asked) Servo Ventilator. It's a specialized (read more expensive AND smarter than standard BPAP) variant of the BPAP where there's an algorithm that senses central apneas and counteracts them. It does this by ramping up pressure in an attempt to trigger the regular breathing cycle/pattern that was, typically in most cases, interrupted by an imbalance of the oxygen and carbon dioxide levels present in the patient's lungs.

When I'm masked up, standard CPAP or BPAP units cause my brain to think I don't need to breathe, because it's not receiving the presence of carbon dioxide in the lungs necessary to signal a breath is needed to exchange CO2 with fresh oxygen. (All of this is based upon what I understand about ASV and central apnea events.)

My ASV tracks my most recent breathing patterns, and when a central event occurs, the machine uses that info to mimic that pattern by adding pressure to coax me into breathing again.

[Gideon]

I meant to post this earlier
Denial
Why is denial first? Simply because this is where many of us started. What we have is mostly “normal” for us, we don’t know any other way because it is the way it has always been. Occasionally the root cause is something else and OSA sneaks in, but more often than not we have had it for a very long time. If you have any doubt, get a sleep test. My story: Like many here I did NOT have sleep apnea, I didn't stop breathing in my sleep, I didn't snore. Sound familiar. JUST to tell her "I TOLD YOU SO" I took a sleep study. I had 90 events per hour, an AHI of 90!! Go figure.
I didn't have a problem, I was driving off freeways at exits because I was driving to stay on the road. It was the rumble strips on the side of the city road that woke me up, rumble strips you ask, most know them as driveways, I was driving across driveways, and scared to admit it. The 2nd sleep study, the titration study, and I woke at 5:30 am actually feeling awake and refreshed, I was stunned! My DME told me 6-8 weeks to get a CPAP device and I said no way. I said find one elsewhere and I'll travel as far as it takes to get it. The end result was about 1.5 weeks to get an appointment and the device, and I've never looked back. My Rx was CPAP at 18 cmH2O and I took to it like a duck to water. I was lucky, I was immediately feeling better. That was in 2003.



Yes, Egypt was a very populated part of the world.

[SarcasticDave94]

FWIW I look back and it seems to me that I may have suffered from undiagnosed apnea for up to 25 years. Yep in denial at the time that my sleep troubles HAD to be anything but sleep apnea.

[jaswilliams]

I’m struggling and have been using mine for about 2 weeks. I told myself that it would require time and a lot of patience. It has been not pleasant. Mostly because I’m a lifelong stomach sleeper and I find the whole set up uncomfortable. Emotionally it’s a difficult thing to accept. Add feeling exhausted because you can’t sleep with this thing and it’s a triple whammy.  I’m going to persevere to see if it will help and for my health.

Do you know what nasal mask you are actually using ?


Some front sleepers have had success with the Resmed P10 its very minimal and can stand being buried in the pillow.

[jaw2004]

I've been trying to use the CPAP for just under 2 weeks now, and I am not at all convinced that it's worth the effort. I believe I have a good (auto) machine. So far, I've been using it for 2-5 hours a night, but have been removing the mask during the night so I can get some rest. The mask is tolerable, but my awareness of the machine, the straps, the seal, and my sleeping position are interfering with my getting a decent night's sleep. I feel so much *less* well-rested than I did before I started this routine! 

Is it typical to feel so much worse with this thing?? I feel like I'm just going to stick with it for a month to satisfy my insurance company and then put it away forever. I used to look forward to sleeping at night, and I hope to enjoy sleeping again some day. This is torture!

Hi Lynnbreathing.  I understand exactly what you're going through.  I've been on this journey personally for a little over a year.  However, I've been an RN for 37 years and have seen first hand the long-term affects of sleep apnea and sleep disorders.  I worked nights for the past 17 years...and I can pretty much guarantee 80% of the chronically ill patients I've cared for over the years have either diagnosed or undiagnosed sleep apnea...but if it's been diagnosed, they're not using a CPAP. The chronically ill patients who ARE using a CPAP?  They're doing much better than their same-age counterparts refusing to use the CPAP. 

Studies have shown untreated sleep apnea increases the risk/likelihood of developing type-II Diabetes, Hypertension (high blood pressure), heart failure, heart arrhythmias (irregular heart rhythms, especially atrial fibrilliation, which is often a significant cause of heart attacks and strokes AND ventricular arrhythmias which are the #1 cause of "sudden death" in supposedly healthy people) depression, anxiety, dementia....especially Alzheimer's.  Also obesity, osteopenia and osteoporosis.  These are long-term effects of untreated sleep apnea.  Up to 70% of all heart failure patients have a history of sleep apnea... unfortunately, too often the vessel damage and progression to heart failure is already in motion by the time sleep apnea is diagnosed and treated.  However, starting treatment CAN stop the damage from progressing any further.  Studies are now underway to see how sleep apnea may be involved in causing kidney disease and failure.  THe list is growing.  The research is growing.  The medical community is learning that SLEEP or lack thereof...is the BASIS of EVERYTHING.  I'm starting to see cardiologists order sleep studies immediately after a patient's first heart attack or the discovery of an irregular rhythm or high blood pressure.     

I was diagnosed with general anxiety disorder and ADHD when I was 40, although I had symptoms as early as 8-10 years of age.  It just took me until 40 to finally have the guts to take care of myself and get professional help.  For the next 18 years, I really struggled to keep my BP in check...my doc & I both felt it was due to the anxiety, but the meds for ADHD made the anxiety worse.  I had major sinus surgery 6 years ago after struggling over 20 years with ongoing chronic sinus infections.  I couldn't breathe through my mouth effectively, and if my nose clogged up, I would wake up gasping for air.  I thought the surgery would "fix" my sleep issues.  Didn't.  Just seemed to be a catch-22.  Yet, even after taking stimulant meds off & on for 18 years, after my sinus surgery, my overall exhaustion continued to get worse, and two years ago my cognition was just shutting down.  My doctor ordered a sleep study as the last option.  I thought I slept fine...even though I'd always been a night owl and hated mornings.  I knew I needed 10 hours of sleep minimum to function, and after 40 years...my anxiety was mostly rooted in going to bed.  I'd start having a panic attack when I finally went to bed at night, because I was afraid I wouldn't fall asleep.  I still remember nights as a child when I never fell asleep all night long....and I could barely make it through the next day.  

I'm 5' and have never weighed more than 115 lbs.  I eat pretty healthy...not perfect, but very little junk.  Whole foods from all food groups.  I exercise.  I really thought the sleep study was a crazy idea, but I was desperate.  I really thought I was developing early-onset Alzheimer's at 57.   People with Alzheimer's are 5 times more likely to have sleep apnea than people the same age without any cognitive decline. 

THen I read a blog written by a female sleep neurologist at my medical center.  She talked about how sleep apnea presents differently in women and is underdiagnosed.  Here's a link to her article if interested: https://www.vanderbilthealth.com/sleepcenter/45085

I called and scheduled an appointment.  When I walked into my appointment, she looked up from my chart and said she was willing to bet her paycheck I had sleep apnea, and everything in my medical history was connected to my sleep.  While my study showed my AHI was "only" 9-10... I had NO REM sleep.  I honestly couldn't remember the last dream I'd had.    

It took almost a month for my DME to get their act together....my husband set up his CPAP for me to trial.  He had been diagnosed six years earlier, and while I saw improvement, he didn't "feel" that much different, so he quit.  It was a bit challenging because his was set to a constant pressure of 10 and I didn't yet know how to hack the settings.  But once I was able to sleep several hours with the machine...I felt DIFFERENT.  I suddenly noticed I could walk four blocks without being out-of-breath at the end.  I've always been one to "push" myself physically....but I had learned repeatedly I'd hit a "brick wall" after a certain point & just couldn't improve my exercise endurance.  Frustrating. 

Then, because I was in grad school for my master's in nursing....I started digging through the actual research.  It was both amazing and frightening.  Then I reached out to Havard...because I've been a participant in the Harvard's Nurses' Study II for 30 years. There are currently 3 active Harvard Nurses' studies...studies I & II have both made numerous landmark discoveries.  Harvard has been asking about sleep on the Nurse I study for about the past 4 years; the Nurse II study had the first sleep questions asked in 2017.  I'm convinced that the majority of night nurses I've known over the years have sleep apnea, because they cannot function during the day.  I'm also convinced the only reason I don't have more serious long-term effects of sleep apnea at 59 years of age is because I've been rather OCD about my sleep all my life.  It wasn't great sleep...but by God....I made sure I was in bed at least 7-8 hours whether I slept or not.  

After about 14 months of APAP therapy (and this group teaching me how to optimize my therapy) I still struggle night-to-night.  But, I also know the cumulative effects are showing improvement.  I've reduced my ADHD meds, my anxiety meds, my BP is well controlled without meds, my cognition is much, much better.  My greatest challenge right now is convincing my brain that it no longer needs to go into panic mode when I'm ready to go to sleep at night.  Still working on it...but I'll get there.  I can't re-wire my 40+ year old neural pathways in a year.  But thanks to the neuroplasticity studies...I know I still can.  It isn't too late!
 
We are still only at the tip of the iceberg in discovering the relationship between sleep and every chronic health condition out there.  But it's in the works. And simply the fact that CMS (Medicaid/Medicare) is willing to cover equipment costs for treating sleep apnea FOR LIFE convinces me, as a nurse, that the connection is HUGE.  CMS doesn't spend money on ANYTHING it doesn't have to.  And I wouldn't be surprised if at some point down the road, CMS decides to NOT pay for treatment for co-morbidities caused by NOT being compliant with CPAP treatment.   And I fully expect to see screening sleep studies recommended and paid for by insurance for 30-year olds, just like mammograms and colonoscopies are now.

You can find plenty of testimonials and blurbs on Google and Wikipedia.  But if you want the harsh reality...go to Google Scholar and start reading the actual research that is being done.  It's convinced my husband to go back on his CPAP after he saw the improvement in me and I told him what the studies were uncovering. For DECADES...my husband got up every morning and took an hour-long nap in his recliner.  Then would fall asleep in front of the TV by 9 pm.   This man ran 3-4 times per week, ate ridiculously healthy and was almost underweight.  But when we would drive anywhere...after an hour, we needed to switch drivers because he needed another nap.  He also drank 5-6 caffeinated drinks per day.  

He retired 3 years ago...and after a year back on his CPAP, he now gets up 5 days a week and goes out and drives UBER....for 5-8 hours a day!  When we travel together, we still switch drivers regularly, but he reads instead of falling asleep.  His numbers also aren't perfect, yet....but we're getting there.  Oh...and he might drink ONE caffeinated drink per day.  

I know that despite my continued challenges I'm getting better and the sleep I get is definitely better quality.  I'm having REM cycles and remember dreams.  I know every night I put on my mask, I'm reducing my risks of chronic co-morbidities.  My father died of Alzheimer's.  My mother of heart failure from hypertension.  Both lived into their 90's, yet I'm sure both had sleep apnea.  They lived healthy lifestyles without junk food, obesity, smoking, or other substance abuse  If it's in my genes to live to my 90's, I want to be as healthy as possible.  Not just for me, but for my children and grandchildren.  I don't want to burden them and I don't want to spend any of my free time in hospitals!  I already work there 60 hours per week!  

You can do this.  One night at a time.  It all adds up.

[Fats Drywaller]

Very interesting. What a good testimonial.

For the possible benefit of Lynn and any other doubting newbies, here's another point FWIW: Once you have got into the habit of using CPAP (no discomfort any more), it provides something pleasant at the end of the day for you to look forward to. We all like those things, whatever they might be, and this is another one that reduces stress & anxiety & stuff, giving you a chance to unwind.

As many CPAP converts have said in their testimonials, I look forward to putting on my mask when going to bed, because it's pretty much a guarantee of good, restful sleep (with a healthy number of REMs). And during the day if I happen to be temporarily stressed out for any reason, I can say to myself "Self, never mind; you've got some good sleep to look forward to, and that'll fix it", and so on. It goes along with the old comforting saying "Tomorrow is another day", which unfortunately is not all that comforting to someone who is suffering from untreated sleep apnea!