Notes from a newbie

[Tatooed Lady]

The first nasal pillow I tried I LIKED, mostly...except it seemed like I couldn't breathe well. I think that defeated the idea of wearing it. Anyhow, the swift fx I got came with 3 sizes. XS, S and M. I was put into a S, which apparently wasn't right...so I started monkeying with sizes and finally realized the M works best.

Morning migraines were cut out by lowering my humidifier to level 2 instead of 4.

I'm up less frequently at night to pee. What miracle is this???

Two weeks in and I don't know that I feel any more awake during the day, or less inclined to take a nap during the day. Truck driving can be boring, so zoning on the endless highways could be a reason for fatigue.

I made a fleece sleeve for my hose. This way I don't have to hear the plastic rub on anything at night, and it doesn't wake or bother me in my sleep. And it was simple and way cheaper than buying one.

I installed SleepyTime on my laptop, and have enjoyed looking through all the info...even though I don't understand most of it.

SleepMapper app is on my iPod...far less info than SleepyTime, but a very basic idea of daily totals...and since my unit transmits via wireless modem, no messing with removing the sd card.

I love the smell of Vicks VapORub...no clue why, but is always have. I started placing an open small jar laid on its side next to the air intake...very soothing to me. It helps my sleep, I think.

I talked to a pharmacist regarding OTC mess I can take at night to help reduce sinus swelling, potentially long term. He said Zyrtec is good, but suggested the generic to save money. So I bought a bottle of the 4 hour variety for around $3. I hate finding out the hard way that a 12-24 hour med makes me feel wired, weird or whatever, then have to wait for it to wear off. This stuff seems to be fine for me.

I have a nasal pillow mask, and I'm finding that the inside of my left nostril is tender...however, that could be from the kitty attack last weekend...

Lastly (for now), is it just me, or when removing the mask in the morning, is it common to smell a perfum-y scent?? Not sure if it's air fresheners of the past, or due to scent deprivation (if such a thing exists), but it's...odd.

[Pugsy]

I'm up less frequently at night to pee. What miracle is this???

There's a stress hormone produced by the heart when we have apnea events called ANP...atrial natriuretic peptide. This hormone when it goes to the kidneys triggers the kidneys to go into overdrive and when the kidneys work hard they produce urine.
Nocturia is a common side effect to sleep apnea for this reason and with effective cpap therapy the body doesn't dump out all that stress hormone into the blood stream so the kidneys don't work so hard in response.

http://en.wikipedia.org/wiki/Atrial_natriuretic_peptide

http://qcom.etsu.edu/cmefiles/handouts/ ... ffaker.pdf

My very first sign that my cpap therapy was working was the nocturia went away. Prior to therapy I was getting up around every hour to pee and with a painfully full bladder at that.
So while it isn't a real miracle since there is scientific basis for what caused it and why effective cpap therapy reduces it...it is a nice "miracle" to have happen.

Of course sleep apnea isn't the only reason people have nocturia but it is a very common reason and there's a real good chance that treating sleep apnea will fix nocturia issues.
The other side effect from sleep apnea that went away pretty much immediately was the morning killer headaches associated with Oxygen/carbon dioxide imbalance. My Oxygen levels went to 73% prior to cpap therapy. With effective therapy they don't drop at all now. I still might have an occasional morning headache related to my neck or something but the killer morning headaches from lack of oxygen quit.

Those were the 2 main symptoms where I saw marked improvement with the onset of cpap therapy. The other stuff that we read about like waking up feeling like tons of energy....came on real slowly...and in fact I still don't have "tons of energy" but I do have more than I did without the cpap therapy and I am no spring chicken anyway and my body has a few other issues besides OSA messing with my energy levels.

As the wife of a truck driver I understand some of the special situations that are just part of the job.
Often no set sleep schedule and sleeping in noisy places and things in general just not conducive to the greatest sleep anyway. It's hard enough anyway but you have a few more challenges to getting good quality sleep in sufficient hours to offer you the best chance for energy increases.

Get some Lansinoh lanolin ointment if the nostril still stays tender. WalMart baby aisle or similar area of most stores.
Use liberally during the day and tiny bit at night.

If you like the aroma of Vicks...they make aromatherapy products you might like.
https://www.cpap.com/cpap-comfort-clean ... herapy.php
Clear and Sinus blaster are a lot like Vicks with more punch to it.

[tortoisegirl]

Hi! Glad to read you are already seeing some benefit. If the Swift FX isn't ideal for you, don't be afraid to ask your DME if you can try something else. The sooner the better, as they often have a 30 day policy where you can swap it out (for no cost, unless the new one is more expensive). It varies by DME though. A good DME will let you try on several different types of masks and see what works out best, so don't just settle on one if it isn't working (isn't comfortable, leaves lasting red marks, excessive leaks, vent air blowing into eyes, etc). Most end up trying many masks before finding one they are happy with.

My DME actually suggested a small open container of Vick's by the air intake to help keep the sinuses open. I ended up switching to a full face mask after one night though (which is what I wanted to begin with). I actually find it more comfortable oddly enough. There are nasal sprays too, from those that reduce inflammation, decongest, or just a basic saline rinse.

Pugsy has a tutorial on using Sleepyhead: viewtopic/t88983/Pugsys-PointersSleepyH ... nding.html The first things you may want to look at are AHI (Apnea/Hypopnea index, the number of events per hour, where under 5 is treated) and leaks (above 80 or 90 L/min is the cutoff for Respironics where the machine may have difficulty accurately detecting events). Best wishes.

[Janknitz]

Talk to your doctor about a nasal steroid spray that will treat your sinus allergies without creating a buzz.

Otherwise, it sounds like you're doing great.

If you're not finding that you're particularly more alert, two things:
1. Check your data closely to ensure that your pressures are dialed in for optimal treatment.
2. Consider your diet. A diet heavy in carbs will make you drowsy and tired as your blood sugar peaks and then drops.

[Tatooed Lady]

Pugsy, I will take the non-miraculous miracle of not needing to get up 2-3 times per night to pee HAPPILY. My headaches are normally stress induced...or caffeine related (I'm an addict)...but the headaches I had the first few days were, apparently, humidity related. I'm GLAD I got that worked out. I also find, thinking back, that over the past few months, the noises outside the truck at night were waking me more frequently. With therapy, I tend to be a heavier sleeper, like I used to be. Yay!
I will have to check out the ointment. If not for now, for later. And the Vicks aromatherapy lineup, as well.
tortoisegirl, I actually like the FX, now that I found the issue. I can move in my sleep and not knock the mask loose, plus I don't have much for red marks on my face in the morning. I'm not aging gracefully to start with, I don't need to look goofier than usual in the morning. lol My DME and I...we had a bit of a fallout almost immediately. The woman I got set up by was wonderful. But she's a third party type deal, so the woman I get to deal with for prescription changes, problems, questions, new parts...well, I sort of screamed at her one day, then hung up. Strangely, she remembered me the following week when I called back (I had to calm down before calling back.).. So I REALLY don't want to deal with her anymore. She didn't listen.
I read some of the tutorial for SleepyHead...I'm working my way through slowly, trying to figure out the basics. It's very interesting AND a challenge.

Janknitz, I found that steroids and I do NOT play well together. They make me aggressive. Not good. I'm already mean, if you ask my boyfriend. Or my son. Or my ex. or the DME.
I think the pressure is okay, for now. I've seen a high of 12, but that was during a leak. So...about the only thing I think anyone could improve is just to cut the top end down from the wide open setting.
And...my diet sucks. I'm iron deficient, so tend to be low energy on a regular basis. It's something I need to improve on...

Thank you for the input, I've learned a bunch from the posts. It's nice to not feel like I'm in this alone.

[Pugsy]

While I am thinking about it and to avoid possible confusion later how about we fix up your equipment profile.
As it is right now it is pointing to the PR S1 model 550 machine and a humidifier that won't work at all with the newer machines.

The model 560 machine is actually newer and you would be more likely to have been given that machine. It would be good to know which one for sure you have because the 560 has a few features the 550 doesn't have.
So look on the bottom of the blower unit (make sure water tank is out of course) for a 3 digit number which probably will have DS or REF in front of it.

If it says model 560 then you have the wrong machine chosen in your profile...the correct choice for the machine would be PR System One 60 series Auto CPAP
and the correct humidifier choice would be
PR System One 60 Series heated tube humidifier with heated tube (even if you don't have the optional heated hose right now)

If it says model 550 then you have the correct machine choice but the humidifier choice would be
PR System One Heated humidifier.

Don't let the AFlex thing throw you...all the 550/560 machines have AFlex even if the choice in the equipment menu doesn't show it.

And yes....even if I had no other symptoms of sleep apnea to go away other than the frequent pee breaks...I gladly would take just that one improvement. That alone is/was worth it to me.

[Tatooed Lady]

You were 100% correct. I'm a tad frustrated. Not with my unit, or mask...but with PR making so many of these things that all look identical (only to me??), are closely named, and them are listed under a variety of titles.
I was trying to tell my aunt what I wound up with, as she is due for a new CPAP machine, and was interested when I told her how I can't even hear mine unless I'm all but laying my head on it...but when I tried to tell her WHICH one I had...ugh. I think I came close enough, though. And she thinks aromatherapy is a brilliant idea (I wish it were mine!), so I hope to soon see her and another friend of mine posting on here.