Side effects I wish I'd known were normal before I started

Greetings...just thought I'd share my first month of CPAP use.
My original diagnosis was insomnia, I didn’t have any of the classic OSA daytime symptoms, but the doctor said let’s do a home sleep study anyway. I got a call scheduling a titration appointment in 2 days. AHI was 72, and Oxygen sat. was below 70.
I’m claustrophobic, so I just knew I could never wear a mask to sleep. My husband has been wearing one for 11+ years and I have to keep a pillow between us to prevent the vent on his hose from blowing on me.
Titration took from “lights out” at 9 pm to 4:30 am to find a pressure that eliminated the apnea. I don’t think I ever slept, even with an Ambien. Wound up at a 13 cm H2O. Got my machine the next day, and off I went. I did enough research to know that my choices were a mask or a heart attack. Mask it is. I have the RemStar Pro 60 series, and a Wisp nasal mask.
Here are a few things I wish I knew were normal side effects before I started so I wouldn’t freak out. I did a lot of scouring forums and research on Medline Plus, so thanks to those that posted their experiences.
But here’s the end result: it has made me completely redefine myself as a sleeper. I didn’t realize how much I dreaded going to bed…I knew it would take me hours to fall asleep, I would wake up frequently for no reason (only now I know the reason), and I just felt rundown a lot. Now, I look at the clock, and try to restrain myself until it seems like a reasonable “grown-up” bed time! It still takes me a while to fall asleep, but I’m averaging 8+ hours with an AHI of less than 1 nightly. I can generally sleep through the night, I wake up before my alarm clock goes off, and I can get right out of bed. I thought it might be good to put that at the beginning!
• Air forced up your nose can cause your body to act like you've got allergies. Use a good saline nasal spray, at least until you get used to it and figure out your humidity settings. (I live in an area where humidity hovers around 8 )
• Your hose vent will blow on you or your bed partner…no matter what you do. Fix: barricade pillow I held the hose in my hand as I was falling asleep, but I keep a washcloth to tuck into my headgear to cover my forehead. Experiment.
• The weight of the hose can pull on the mask, especially the smaller nasal mask. Fix: There are a million different hacks, I loop mine over the headboard. Apparently, I’ve gotten quite adept at flipping it over my head when I turn over.
• Air will blow over the tip of your nose (it does with my Wisp). I haven’t figured out a fix, I turned up the heat on the humidifier. Sometimes the air swirls around my nose inside the mask. It’s annoying, but you do kind of get used to it.
• There are two humidifier settings; one for heat and one for volume. I screwed that up and cranked the volume to 5. Wound up with a nasty head cold and congestion, or it could have been a coincidence.
• Your chest hurts. Fix--time. Since I hadn't really been breathing at night and it takes different muscles to breathe lying down, my chest hurt for the first couple of weeks. Nothing to do about it but maybe some deep breathing while lying down for a couple weeks.
• Central sleep apnea temporarily increases. My doctor described it this way: because your brain has been working to wake you up because of OSA for so long, now that it isn't necessary, the brain has to "reset". In resetting, it sometimes fails to send a signal. (I had about 16% CSA in my sleep test anyway). For me, this was terrifying. I could “feel” myself not breathing as I was almost asleep, which led to me “knowing” that if I didn’t force myself to breathe, I wasn’t going to, which triggered a panic attack and resulted in my tearing my mask off and not sleeping for a couple of days. It only lasted a couple of days, but was really disconcerting.
• And finally, I had turned the heat up too much on my humidifier, which makes you feel like it’s hot and muggy and you can’t breathe.
That’s my first month experience, but all in all I think I’ve adapted fairly well and fairly quickly. It’s a mindset…mask or heart attack.
One other piece of advice my RT gave me…if I’m compliant for my insurance carrier, at 6 months I get a new mask and headgear and stuff. We’ve scheduled a FFM fitting, so I have one in case I get sick again and can’t breathe through my nose. She said as long as you wash it really well and store it right, you can use it occasionally if you get sick.
So even if no one reads this, it felt good to write it down. Thanks for sharing your experiences!

3 weeks in here and many of the same things, must be common
Mind set is so true, just not used to understand what all the new sensations mean
Must stick with it attitude, mask or heart attack. Well I had my heart attack 7 months ago
I checked them off as I read them, all but a few are the same. I don't like heated air or high humitity

this will get read and by many that need to understand it

Great post! I don't use a humidifier. Like you said, I don't need the heated air and it is nice not to mess with the water... and the fuss and mess. When I read dicussions about humidity or the humidifier... I will ignore it. I suspect, tho, there are a lot of folks that treat their apnea humidity-free.

Sheriff

Great post. The chest pain thing especially was a surprise to me when I experienced it, but I was fairly sure it was muscle and not heart (asked doc about it just in case). Having a hose dangling above me was just asking for trouble from my cats, so I'm getting one of those clip things to clip the hose to my pj top to keep the mask from moving around. I injured my nose a few times using Wisp and Airfit nose pillows due to that.

Forgot to mention the burping. So after a couple of weeks of what I thought was doing fine, I apparently turned over in my sleep, but woke up because I could have competed with any 13 year old boy in a burping contest. Like reciting the alphabet competition! Turns out with the nasal mask my mouth was open and I was eating a TON of air. Had to get a chin strap. I also wear a dental night guard for clenching my jaw, and now I think I've got it figured out. For someone that is claustrophobic, now I have a nasal mask, chin strap, and a washcloth over my forehead. Lol, only my eyes are exposed!

NIce post...it will be read by many...welcome to hosehead life...

Stephen

Nice post. Like my neurologist up at Mayo said - "untreated apnea will kill you" - or Mask vs Dead. Its amazing what you can do if you finally believe the choices.