Needing support dealing with the CPAP machine. ....

Please don't judge how I feel with this machine.  I posted a few weeks ago on another Forum & pretty much got ripped on that "I should be so lucky that I can get one , etc...." I went for my 1st Sleep study a few weeks ago.  Dr. Rosen's office called & said I had  "Mild Sleep Apnea" & since it was mild they weren't going to worry about anything before surgery, which is 17 days from now.   Last Wednesday the Dr's office called again & said he changed his mind & to go back in to be fitted for a CPAP.   I broke down into tears just having the thought of wearing this machine to bed, of course never even seeing what one looks like, I already was panicking.  My mind started wandering.........  Then I got there last night. As she fitted me I freaked out & started getting hysterical.  She went thru 3 different masks & I felt totally clausterphobic.  I had a harder time breathing WITH the mask on. By 1 am , I was STILL awake & STILL freaking out. I pulled all the wires off & was getting ready to leave & she came in & said that the "protocal"was to call her supervisor.  So I said to go ahead.  Then she made me talk to her.  She convnced me to take another Zanax, 3 mg in 3 hours & try again because Dr. Rosen probably would not let me have the surgery w/out doing this. At that point, I really didn't care.  If I had known all this was going to happen and the "pre-requisites" that came along with it, I might have opted out by now.  She said to just get through "tonight", then I'll have the machine "if" I need it & then don't worry about it until the operation & bring it to the hospital, because she's sure he'll want me to wear it  right after surgery.   Is that a possibility ?  That I could maybe just get "by"  like this ?   Or , is she wrong ?  Does the machine do something to me before the surgery that will keep me from dying ?  If that's the case, that's too much of a risk for me already.  The next morning ( which was only 3.5 hours later) she came in & asked me how I slept, did I feel rested ?  What kind of a question was that ?  My face hurt, where the mask was, my nostrils are sore and I was bleeding when I blew my nose. Grrrr.This whole thing is freaking me out.!   Please don't think I am  baby, I have had 4 c/s and went home from the hospital the NEXT day with 30 + staples.   And several "other" surgeries. No problems with anesthesia or anything. I have daughter, just barely 2 that sleeps in between my husband & I & just thought of not being able to snuggle with her ( because lets face it, there IS NO movement with that machine on ) & I am going to scare her to death when she see's me in that mask.  I still get up several times a night with 4 daughters ( on some nights) and lying in bed for the one  hour before falling asleep with my husband is all I get. He works evenings & me days.  It's not a little machine, it's HUGE & the hose is only 6 feet long ?  It's something so archaic, you'd think by now, 2008 they would have come up w/ something a litle more "un-awkward" ?  I work 40-60 hours a week & I have had 4 daughters in 8 years. My total "allowed" sleep per night ( for the last 9 years , at least) almost NEVER goes beyond 6 hours and don't you think SHEER EXHAUSTION is more what I have rather than sleep apnea ?   Plus, really, I truley doubt that my quality of the whole 5-6 hours of sleep a night would be any diferent. I sleep fine  and I don't have a hard time falling asleep, at all.  How is " Dr. Rosen" with any of this ?? Does anyone know ?   THANK YOU< THANK YOU if you got this far... I need "something", I don't know what yet & whatever information you can give me ( but no bashing, please) I thank you in advance.  I'm still emotional about it.  I know, get over it already.......

All I can say is that I hate mine too!  I have never made it the whole night without ripping it off of my face at some point.  I swollow so much air at night that my stomach is killing me in the morning with built up air pressure in my gut.  Not gas, I just have to wait for it to be absorbed I guess.   I don't have any sollutions for you, sorry.  My husband loves his and wont sleep a night without it.  So I know that it can be done, I just can't do it! Chrissy

Yikes.  My husband just started his CPAP this week.  He has pretty bad apnea.  In just this one week the difference in his health is nothing short of remarkable.  He wakes up rested and gets out of bed immediately instead of me having to remind him a few dozen times.   His BP and blood sugar has already gone down and he feel rested.  There is oxygen going to his brain.  Pretty cool stuff.  Now he also has been bleeding as a result of his mask - right under his nose - near his nostrils - not pretty.  So he is supposed to be sent a new mask.  Hasn't happened yet.   That coupled with the dental surgery he had this week -  not a pretty picture.  I suggested that he hold off on using it until he gets the new mask - he is actually already preferring to sleep with it because of the benefits.   My kids joke that he looks like an elephant.  It's kind of funny. If I were in your shoes, I would just do what I had to do in order to have the surgery and go from there.  Someone told me that early on in my process and it really helped me.  This is just another one of those hurdles that you have to go through.  You can do this.  And it will be worth it..

For what it's worth, I LOVE my CPAP machine. It did take a little getting used to, but the pro's kicked the con's by a lot. I sleep a lot better, I am rested, and I beacuse I have a humidifier with mine, I haven't had any sinus problems in over a year. It keeps things nice and clear. As for surgery, I was instructed to bring mine to the hospital and they put it on me in the recovery room and made sure I wore it while I was sleeping.  Hang in there and give it a try, you might be surprised with the results. Shawn

I took mine to the hospital too as requested by my doctor and wore it in. 

I also hate my CPAP machine, but I do get a better night's sleep. All my life I've had to take a nap in the middle of the day f I could. I am now 55 years old and didn't even know I had sleep apnea until last March right before I had my LP surgery. The quality of sleep is so much better. I too had REAL difficulty getting used to the machine. My biggest incentive was to meet the health insurance companies requirement of using it an average of at 5 hours a night to purchase it or lose it. I have a machine with nasal pillows and not the full mask.  I found that by applying vaseline in my nostrils before I go to sleep helps, as well as putting moleskin ( by Dr. Scholl's) on the nasal pillow between my upper lip and nostrils, as well as putting the machine underneath the bed on the floor helped. I also put a rubber band around the hose to attach it to the bed frame helped, so I don't get tangled up in it. I now find I don't need to nap during the day and I dream, which I hadn't since I was not getting deep sleep. Having sleep apnea and not taking care of it can cause strokes, COPD, accidents due to being sleep deprived, and other not so pleasant things. Hope this helps! You'll need quality sleep after your surgery to heal! DIana

I'm sorry you had such a bad experience being fitted for a CPAP.  I was diagnosed with sleep apnea during my pre-surgical sleep study and fitted with a CPAP machine which was hard to get used to and seems to make no difference to my sleep or health.  Interestingly, at the time of my surgery, my surgeon told me to STOP using the machine for 2 weeks because the pressure might be too much for me.  About 4 weeks after surgery I was refitted by using a self-titrating CPAP machine provided by the company that leases my own machine (didn't have to have another sleep study) for 2 weeks, and the setting was then changed from 12 to 7 (the lowest is 4).  Despite the humidifier feature, the machine does tend to dry my nose out.  One of my long-term goals is to get rid of the thing altogether. That said, I would still encourage you to give the CPAP another chance.  Sleep apnea has implications for anesthesia and if your surgeon requires you to use it before surgery, you should do it.  Maybe an RX for Ambien to help you sleep while you get used to it would help. Jean

Children are very curious and additionally learn from behavior. If you present yourself as comfortable with your c-pap and let your children see it, touch it, etc they won't be afraid of it.  Also, your mask will have a quick release to get it off easily when you need to get out of bed throughout the night. Additionally, if your nose was bleeding from the insides it sounds like there was no humidifier on to help keep your nose moisturized. I've never had this problem since I have a humidifier on mine. As for how difficult it was to get fit and trouble breathing while they try, yes, I had that. I also experienced it again when I got my home machine and the lady came to my house to fit me with a mask. However, she was much more patient and understanding than the person at the sleep study. The one they made me wear at my sleep study went over only my nose and pressed hard against my upper front teeth until it was painfully sore. I was fitted at home for a full face mask and it is much more comfortable. Hey, I don't look like a beauty queen with my mask on at night but who cares. My health is more important than my vanity. In fact, I now call it my space suit and I gear up at night to take a trip to dreamland. I had not experienced dreams in so many years that I forgot what they were like. I love dreamland and some mornings hate to wake up cause I want to finish my dream.  

I suggest going online and looking at the health risks associated with sleep apnea.  Use wanting to be around for your girls as your motivation.  I use mine but rarely make it through the whole night.  Mine has the humidfier and living in a dry climate I have found it helps a lot to get that moisture.  After surgery I had a big problem with apnea from what I think ws a combo of anethesia and pain meds.  When I was somewhere like sitting in bed watching TV where I might sleep I wore it and it helped me a great deal.  There are variety of masks don't just settle for one if that is all they used at your sleep lab.  The quick release will allow you to get out of bed quickly as needed.  Do what you want but if it were my surgeon he will not do the surgery if you do not get set up for the machine.  Best of all keep in mind if you lose the weight your apnea will likely go away.   You can do this, MileHigh

You're going through so much, you poor dear. I at least had the benefit of going through the process with my husband and knew what he had to go through. I had the same anxiety attack with my first sleep study and walked out. But I was able to go back again the next night. I had a wonderful tech who was able to distract me from my fears.

The first couple of weeks were hell and I had a ritual that I couldn't stray from or I wouldn't sleep. It took me forever to get used to the feeling of the nose piece. I still struggle on occasion when I've had a stressful day. You see, I'm not only dealing with the CPAP, I'm dealing with a baby on the way and a possible divorce in the process so I totally get your anxiety.

I know it's hard, but I can honestly tell you that the CPAP has changed my life and has made me a better functioning person. I'm able to think clearer and be more active with my first born. I still have nights like this where things are too much. I have to be comfortable and can't be in any pain or be given any time to overthink my situation.

To address some of your concerns...

Don't worry about the threat from your doctor that he/she won't do the surgery unless you wear the mask. That's a poor motivator and he/she obviously has never had to go through what you're going through. Your anxieties are 100% normal. My tech told me that most people do just fine using the nose piece. I've learned to strap it on and take several normal, calm breaths before starting the machine. Exhale as you push the button then inhale once it comes on. Also, a meditation audio or video that helps you focus on your breathing might help you drive out other outside distractions or have your husband sing something soothing to you. Breathe normally.

As far as your daughter freaking out seeing the mask...you'd be surprised. My son has seen me with it and he's about 4. If you're that concerned, show her the mask and let her handle it, maybe even turn it on so she can feel the airflow. Explain that it gives mommy air so she can sleep better. You don't have to get technical. Tell her that it doesn't hurt and that more air helps mommy's body strong so she can sleep good.

And they have tons of other options for sleep apnea, but the CPAP sounds to be the best for your situation. I know it's hard to believe, but it really does make such a difference in how you feel everyday. You'll have struggles on occasion no matter how long you've been on the machine. But the important thing is that you acknowledge your anxieties and understand why you're feeling the way you are.

Here are some common misconceptions people have about this machine from my experience:

1.  If it shuts off for some reason, I'll stop breathing and might not start again.--Not true. The worst that will happen is that you'll wake up. The machine won't take away your brain's natural instincts.

2.  I can't move in my sleep because the hose restricts me.--This seems to be one of your bigger issues. Sleep with your machine close. I've often woken in the middle of the night and turned onto my back or side. Sleep how you feel comfortable. Make your husband move to accomodate the length of the hose if you want to snuggle.

3.  I don't have sleep apnea. I'm just overtired from my life.--This one I tailored for you based on your post. Honey, yes you're overtired. But think about it. Oxygen is a basic need for people. When we don't get oxygen, our poor starved brains can't process as well, can't respond as well...I read a study that said sleep apnea starves the white matter of the brain and slowly kills it. This same study showed that when people with sleep apnea used the machine, over time, the white matter began to heal. Not that its a cure necessarily, but that it helps bring back your ability to function daily. You'll feel groggy and sore at first, but you'll soon start to feel energized.

4.  It makes my nose hurt and even bleed.--My doctor told me use KY Jelly on my the outside of my nostrils to reduce the friction of the nose piece. It's worked wonderfully.

I know that you said you were on anxiety pills...sometimes those, ironically, can have the side effect of amping you up even more. I swear by Tylenol PM lately.

Some other tips I've picked up...

1.  Don't go to bed unless you're yawning and tired.--If you do, it leaves time for you to build anxiety over the machine and makes things worse. Maybe sit in a chair beside your bed and talk to your husband until you're ready to go to sleep. If you wake up in the night and can't get back to sleep, don't lay in bed and stew. Get up and do something to get your mind off of it.

2.  Don't use your bed for anything but sex and sleep.--This is big because otherwise you train your brain that it's okay to be awake when you should be sleeping.

3.  Don't overthink it.--You're associating sleep time with getting on the machine. Don't. Sleep time = Time to go to sleep. Pure and symbol. The machine is just a tool to help with that. If you think too much about the process of preparing and using the machine, it'll get to you every time. Prepare your machine well in advance so you can just slip it on and breathe.

4.  A short walk no less than an hour before bedtime can relax you.--It's true. Not only do I take an evening walk, I try to stay active during the day so I'm good and tired before bed. It releases "happy" endorphins that make you feel good and serves as it's own natural pain reliever and anxiety pill.

5.  Lighter meals before bedtime reduce stomach issues and eliminate the distraction of gas and upset stomach.--A lighter meal before bed and no less than an hour before bedtime can mean your stomach isn't still digesting. When I say light, I mean something fairly bland with no acids, like a salad with no dressing. I know it doesn't sound the most appetizing, but it really does help.

6.  Most importantly--don't be afraid to get up and stretch or take a warm shower to relieve aches. Laying in bed in pain isn't going to help you sleep. Best to relieve the pain than to just deal with it. It'll only distract you and cause you more anxiety.