Depressed & Discouraged...What have i gotten into?

[monuoha]

Hi everyone,
For several years i had frequent headaches that would occur randomly all day long. I constantly felt foggy and i noticed over the years it felt like i was slowly watching my wit and personality drift away. I also had spotty moments of bad sleep where i would either wake up several times to pee or just wake up at 3am and struggle to fall back asleep hours later. However i was able to manage most of these symptoms because i was self employed and could always wake up later in the day. I never realized how big of a problem this was getting till i started working a more analytical/cerebral 8-5pm job. Then i started noticing the fogginess and headaches were really affecting my work, friendships and overall health. I could sleep all night from 11pm - 6:30am no problem, i just always woke up not feeling refreshed.

Sadly my insurance deductible is over $6000 and so using that to seek treatment wasn't an option. Luckily a doctor in the family (who's had sleep apnea for 15yrs) suggested i go for a CAT scan and a $270 in-home sleep study. I did both, CAT scan was clean, in home sleep study at a local sleep center came back with a report saying i had mild sleep apnea. My AHI was 12.5. However the dr at the sleep center said the last thing i wanted was a cpap and that all they carry are his proprietary $1500 mouth pieces. I opted out and reverted back to my family member who suggested i get an auto cpap.

The past 2 weeks, I spent countless hours, literally ignoring my family (when i'm home) researching cpap machines on this site and a host of other similar forums. I've binged on several youtube videos in the past week alone eager to figure all this out.

On Nov 18th, I picked up a Philip Respironics Dream station auto cpap with 2 masks - Philip dreamwear and F&P Simplus. All were sold to me by someone off craigslist brand new for $300. My in-home sleep study report had no pressure recommendations since they were bent on selling me an overpriced mouthpiece. So my family dr recommended i start anywhere from 4-10cm2 and see how it goes. I woke up after my first night after using the FFM feeling the BEST i ever had in ages. And thats where my journey starts going downhill.

It feels like i've been chasing that 1st high ever since. The next night was horrible, leaks all over. I'm a light sleeper and once any of this happens...I'm wide awake at 3:30am wondering how i'll be able to focus at work. I sleep on my belly and so the dreamwear was a nightmare for me also because somehow it would end up off my face or spraying air into my face. Plus i would wake up gassy and bloated with it. I tried using the ramp, then not using the ramp as per a youtubers advice. I bought a heated tube, bought a nasal mask (swift fx nano)...all hoping would solve my dilemma of not sleeping through the night without waking up halfway through.

But nothings worked. After 2 weeks of ignoring my FFM, i picked it up again 2 days ago. I remember watching lankylefty mention that you should lay on your pillow THEN adjust your mask to fix leaks. I did that....and once again had sleep almost as good as the 1st day. Still felt drowsy but slept the whole night for the 1st time in almost 2 weeks. Sadly last night, even though i fixed all my leaks, i still woke up at 3am frustrated by some air blowing in my face. Today was my worst day of work thus far. I'm running on fumes. Couldn't even make it in to work today. Need some help before i give up on this whole thing. I think i've only sleep through the night twice since the 16th and i'm starting to break down.

I just need to sleep through the night so i don't have to quit my job and i can go back to being the regular me around my family. The good news is that since i started therapy today was the only day i've had headaches. Probably because i'm going off 3 hrs of sleep.

FYI i'm 37, 6"2, 215lbs.
Thanks in advance.

[Keljian]

Sorry to hear you're a bit discouraged, keep at it, it will pay off

I'm still learning this stuff, but based on the pressure charts with the pressure maxing out, you may want to increase the top pressure by 2-3CM as a starting point. so 6/13 might work a little better

[Ghost1958]

I'll give it a shot.
First the Simplus isn't a "float on your face" mask and adjusting it as such guarantees it will leak.
Adjust the bottom straps until it doesn't leak around the bottom or sides then tighten the top side straps just enough to not leak.
Let that roll fit on the top do it's thing. The mask upright should NOT be resting against your forehead.

It also rides lower on the face than other masks. .

Go into clinical settings on your machine.
It has as auto trial mode.
Put the machine in auto trial with a min pressure that doesn't make you feel smothered probably about 8 or 9.
Leave the max setting at 20.
Set the number of days auto trial is too run. I think 7 days is the minimum it can be set for.

Now the machine will treat you but also titrate your pressure pretty much like a sleep lab would do.
At the end of time you set the machine to run in auto trial, it will enter cpap check mode automatically and begin running on single pressure mode .
While it's in cpap check mode it will gradually make minor adjustments up or down until it finds your single pressure setting based on residual events

Now you have a good titrated single pressure to work from.
Go back to auto mode. Set min a couple of numbers below that pressure or use it as your min and leave the max wide open.

Doing it this way is slower , takes, a, min of two weeks but it has the advantage of the machine not responding to centrals, and a pressure titrated based on events
using the machines own algorithm.

Youll need stay with one mask while doing this.


Sorry for the post length. It's not as complicated as it sounds.

Hope it helps.

[holden4th]

A couple of thoughts. Your numbers look OK but how you feel is the real indicator.

As a stomach sleeper I can't see how you can avoid leaks in a FFM. While you sleep on your stomach your head will be to the side and this can push a FFM out of position. I'm going to suggest that you stick with the Dreamwear but get the nasal pillows to replace the nasal cushion (they are interchangeable). An alternative is the P10 pillow mask which many posters on this forum recommend.

Getting used to therapy and adjusting everything takes time but it does pay off in the long run. Patience and perseverance are your friend and you already know from experience that effective therapy makes a big difference.

[Walla Walla]

I'd also recommend trying a P10 mask. If your a light sleeper you won't have to worry about air blowing in your eyes and it's the quietest mask out there. I'd try a soft cervical collar to help keep your mouth closed. Many people here use one with great results.

Your min pressure can be raised up to 10cm. It already runs there and above already so by setting the minimum at 10cm you allow the machine to be more effective right off the bat.

The most important thing is to stick with it. Like anything you get use to it after awhile.

Hang in there!

[Rcgop]

Patience. 
It takes time to adjust to the equipment. I have found that as I get better sleep, other problems get worse (leaks, AHI, etc.) And, yes, they need to addressed. 

But bottom line it’s about the sleep. 

Hang in there.

[Hojo]

It will take time to feel better, some more than others.  My AHI has its good days and its bad, when I have good days, I still feel tired and that is why I feel there is more to just using the AHI as an indicator of sleep.  I'm going on almost 5-6 months and still a work in progress, hang in there!

[kiwii]

Have you tried just wearing the mask while you're relaxing and get acclimated to just wearing it? It could be that you're trying too hard to make it work immediately, and you sound stressed about having a poor night knowing how it will affect your work performance the next day. That in itself is enough to mess up your sleep.

Have you read the Mask Primer on the wiki here?

Best wishes. It does take time to get adjusted.. but it also gets better. Hang in there!

[trish6hundred]

Hi monuoha,
WELCOME! to the forum.!
CPAP therapy can take some getting used to, but I encourage you to stick with it; over time, it does get better.
I hope you find a mask that you like, it is the hardest part of this whole thing, try as many masks as you can 'till you find one.
Good luck to you on your CPAP journey, hang in there for more responses to your post.

[PoolQ]

okay. you will see lots of advice, mine included. Figure what works for you.
you have a couple things going on all at once with CPAP/APAP.
the apnea itself -your numbers here are fine
leaks- not catastrophic, but could be better especially if it wakes you up
max pressure- your waveforms should never max out. get you max level to a point where you are not hitting it

min pressure. this for me was a major comfort issue. I could not adjust to exhaling into pressure. ramp helps to get to sleep IF you can stay asleep once the pressure reaches the full min setting. for me a change of 0.2CM in min pressure made it so I would sleep or not

you have humidity settings. I thought I like humidity, not with this and it seems to change all over

I needed to get a Bi level machine because I still could not exhale
then I had to adjust the special settings on a Bi level so finally I could sleep.

Can you get there, probably yes. can you do all the same things you did to sleep before, probably not. You have to get the numbers under control and then find out what about the therapy is making you so uncomfortable that you are not getting good sleep, No one can tell you what that might be. We can suggest some adjustments, but you are just going to have to test them out.

Perhaps you can "just get used to it" my father in law made two adjustments and was done, sleeping fine. Me it took the better part of a year, but now finally I am sleep again and waking rested. Oh and I had undiagnosed COPD hiding under the sleep apnea. Needed to get that treated also. (surprise)

start making changes. small ones. keep a journal, you will forget what you have tried and what you liked. some settings interact with each other, what once was fine, is no longer fine after changing something else.

you don't have to do all this at night, comfort is comfort. lay down during the day, put everything on, change a setting and relax-see how it feels. when you get it right it should be pretty close to no longer feeling like you have a mask on.

Oh and ready up on adjusting a mask to help stop it from leaking. and try hanging the mask off the edge of your pillow. You may have to end up just not sleeping on your back, tennis balls sewed to the back of your shirt have worked for some.

This is not a pill to take, it is a treatment that you are trying to sleep with. This is not natural.