Newbie vs the Facehugger

[dhull213]

In February of 2012 I purchased a Fitbit Ultra fitness tracker to help me monitor the number of steps that I took on my daily walks, etc. One of the features of the tracker is the ability to monitor basic sleep quality. It fits in a wrist strap and you press a button to log when you are settling down for sleep and then press the button when you wake up in the morning. Between those two times, it monitors the amount of time that you are still (restful sleep) and the amount of time that you are moving (restlessness). When you sync the tracker to your Web site account, the site displays a graph that shows the results for each night, and assigns a "quality of sleep" percentage.

After a month or so of results, it became obvious that I was not sleeping well, and endured my wife's "I told you so" speech. She had been trying to get me to do a sleep study for a few years.

I made the appointment and on April 27, I saw a pulmonary doctor and showed him a printout of the sleep graphs from the previous couple of weeks. He said that it showed exactly what he would expect from a person with apnea and ordered a sleep study.

My first sleep study was June 4, 2012 during which I didn't sleep more than a minute and amounted to the closest thing to pure torture that I've ever experienced. I've always known that I'm a little Obsessive-Compulsive and I never considered myself claustrophobic, but I was hyper-aware of each one of the wires in the spiderweb that was attached to my face, head, hands and legs, and could not relax enough to sleep. To make things worse, halfway through the study, they came in and put a nasal mask connected to a CPAP machine on me. The next few hours were spent trying to breathe with a constant wind blowing in my nose. This was compounded by the fact that due to chronic nasal congestion that becomes severe when I recline, I breathe through my mouth when I sleep. Of course, every time my mouth dropped open, the wind would circulate through my nasal passages and right out my mouth, triggering my gag reflex.

A couple of weeks later, I saw the pulmonary doctor and he confirmed that I have severe complex apnea, and said that a machine would be necessary.

A week later, I reported for my next sleep study, where they gave me a full face-mask and hooked me up to an RSV machine. I spent the night either fighting leaks or feeling like I was trapped in a body that was continually fighting this invasion of wind hitting my face. At 5 AM the attendant finally came in and brought a smaller mask and told me that they would reduce the pressure. The wind died down by about half and I actually felt like I might be able to sleep a little bit. Exhausted from a night of fighting, I eventually drifted off, only to be awakened an hour later and told that the study was over.

On June 28 I received my ASV machine, along with a Quattro full-face mask. I was hopeful that this would work out and I would get to see the benefits of breathing freely while I sleep. Instead, I didn't sleep at all. Over the next few weeks, I would dutifully put on the mask and found that, no matter how exhausted I was or what sleep aid I took, as soon as the mask was on, I was WIDE AWAKE and hyper-aware just like I was during the first sleep study. I think at most during those two weeks, the best I managed to do was an hour of sleep with the mask on after about three hours of trying, but as soon as I turned in bed, the presence of something attached to my face brought me back to full consciousness, making me start the process all over again. After day three of getting an hour of sleep per night, I decided that some bad sleep was better than no sleep at all and would remove the mask as soon as it woke me up. I was hoping that I would develop a tolerance for the mask and my sleep time with it would increase gradually.

On July 11 I gave up on the Quattro and got an Amara full-face mask, hoping that the lighter mask would help out. Unfortunately, the results were the same and my pattern continued of getting one hour's worth of sleep with the mask and then taking it off. I saw that some people recommended a break-in period of wearing the mask for a couple of hours before bed while watching TV to get used to it and learn to trust it. I tried that for a couple of weeks, but sleeping more than an hour still was not an option with the mask.

On August 6, at a friend's suggestion, I traded the Amara for a Liberty Mirage mask and was happy to find it less obtrusive. It let me scratch my nose (I never realized how much it itched until it was trapped behind plastic), it weighted less and gave me a renewed hope. It also allowed me to wear and take off my glasses without removing the mask. The full-face masks blocked the bridge of my nose, so I couldn't wear glasses. That meant that I would have to take the mask off to remove my contacts when it was time to sleep. Any acclimation that I may have achieved was gone and I was back to square-one again.

Unfortunately, my sleep experience has been the same with the Liberty. As soon as I roll over in bed, I am wide awake and the mask comes off. I don't have the patience to go through a couple of hours of trying to go to sleep several times a night just to get one hour of sleep.

On September 4 (two weeks from today) I will have my first post-facehugger appointment with my pulmonary doctor. I haven't managed more than an hour of sleep in my time with the RSV machine, so I don't know what he's going to say. I know the health problems of apnea, but after several hours of hyper-awareness and trying to sleep, at three in the morning the idea of trading ten years of life for the ability to sleep at night while I'm alive doesn't sound so bad.

I've read the document on Dealing with Change, but I don't think my problem is with acceptance that I have apnea. That's just a fact of my life, like I need glasses to see. My problem is the physical interactions that I have wearing a mask connected to a machine. I have just enough OCD to make me a very physically sensitive sleeper. I can't tolerate anything foreign restricting me when I sleep. I can't sleep with socks or a t-shirt or pajama bottoms on, because those things restrict my movement by catching on sheets, etc.

When the mask hits my pillow as I turn over during the night, or when the hose pulls at me when I try to move, I wake up immediately. I can't relax with it and stay asleep. But my problem is not just the physical presence of the mask and hose, it is also from the fight to exhale against a wind blowing into my mouth. All my life I have had a hard time breathing in the face of any amount of wind. It causes me to gag and my throat closes off in self-defense.

I'm sure that there are others who have faced these problem successfully, and I'd sure like to know how they did it.

[Maxie]

My first mask was nasal pillows and during my titration study I was allowed to try several masks. I naively thought that I would see the doc, get my machine and mask and go home and all would be well. I think that the people who had everything go well from the beginning may not be on this forum so I'm pretty sure that everyone here is probably smiling at anyone thinking that it would all go well from the start. The main thing I had to change was my thinking. From this forum I learned that I had to take charge of myself and my feelings about this therapy. I tried a full face mask and a hybrid before deciding that I was going to make the nasal pillows work. It may not sound like much but I made a very firm decision to make it work and despite many glitches I've made it work. I've tried most of the information I've seen here and some has worked and some not so well for me but I've kept on keeping on and I now I just go to bed and go to sleep and don't give the mask a second thought. It's as much a part of going to sleep now as my bed! So I'm saying that you have to work on your own mindset to get this to accomplish what you set out to accomplish!

[Ricoh]

Wow, I'm so sorry you're going through all of that. I've had several failed (and hence, repeated) sleep studies due to those stupid wires and sensors. People are very particular about how they sleep, and anything foreign, especially if it's perceived as some kind of threat to physical safety, will sound the alarm and hurl you into alertness. But I gather you've figured that out by now.

First, make sure you tell your sleep doc all about the problems you're having, and make sure he understands how severe it is for you, and how hard you've tried to make it work. (And I agree with you: would you suffer this much for something you weren't willing to accept in the first place?) Don't wait until Sept 4; call now, make it the only reason for your call (think "chief complaint"). It's common for people to have problems adjusting to the mask/treatment, but in your case it sounds like treatment is seriously compromised. It might not hurt to talk to the doctor following your OCD as well, to see if any changes to your treatment are warranted, there, in light of the new hit to your quality-of-life.

[2kittymom]

I too began my adventure into CPAP land with the Fit-Bit tracker. I knew I was tossing and turning way too much at night, and even though I was "sleeping" 8-10 hours a night, still woke up not rested. After tracking my sleep with the Fit-Bit, I could see that I was waking up sometimes 15 times a night. That's way above the average. Then I read that a simple test for an obstructed airway is to lay down in your sleep position and relax your muscles in your neck, and see if you feel any breathing restrictions. I did. I then had a dental appointment, and asked the dentist about a mouth guard that is supposed to open the airway. He said he'd tried them and they work somewhat, but when he got a CPAP machine, he really slept well. So, it was time for me to decide to have a sleep study done. I had that done July 2nd. Two weeks later I had my sleep study, which like many others have said, was awful. It's a wonder I slept long enough for them to determine anything! But, they did, and I was told I have severe sleep apnea. I too believe I have some OCD, and at one time in my life I suffered from panic attacks, claustrophobia and agoraphobia. From the moment the sleep tech put the mask to my face, I backed away, saying "wo, I don't think I can do this." But, then I asked him to just let me try it myself, and I just put it up to my face and took it away several times. When I finally was asleep, at 3 am the tech told me he was going to put the mask & machine on me. My mind told me that this was so necessary, and because I was so tired, I was able to tolerate it. I just kept trying to not panic and to just go with it. Two weeks later I got my machine and mask. Thus began the mask up and lay down and lay awake for hours, and use every tool I could to take my mind off of it. I used lots of relaxation apps and talk radio. (under pillow speaker so as not to disturb hubby). I dealt with a lot of leaky and uncomfortable masks, and made so many return trips to the DME that they all knew me by name, and weren't happy with me. But, thanks to one person who worked there, I got to take home try-on masks. (not new). I'd do my internet research on masks, request ones, pick them up and bring them home to try out. No one can tell you which mask is best for you because what's best for you may not be at all good for me. It's all facial dynamics and personal preference.
Someone on this forum made a profound statement that I really believe is true: your brain has to accept that sleeping with a mask on is okay, and is the way you sleep now. Once you achieve that acceptance, you are so much happier. After 4 weeks of CPAP therapy, I know I am there.
If you have severe sleep apnea, sleeping without the mask & machine is NOT sleeping. You are harming your body. Oxygen is not getting to your vital organs. You risk heart problems, kidney problems, etc. You are at a big risk for a stroke.
You need to accept that this therapy is life-saving, and be thankful that you found out that you needed it, and that there is a solution to the problem. Keep trying masks until you find the one that feels best. If your machine isn't ramped to start you at a low air pressure, I would suggest it should be.
There are a few soft cloth masks on the market: Sleepweaver brand. I have been trying out the Sleepweaver Advanced. It is so lightweight that you hardly feel that it's on. It's a bit tricky to fit so you have no leaks, but if you can do that, it's wonderful. When I get it to keep, I will also get the lightweight hose to use with it. I haven't been able to wear it the entire night because the regular hose tugs on it and creates leaks.
In essence, make peace with your new equipment, doing whatever it takes to accept it. One member suggested a new comfortable bed. Some people use essential oils that calm them. Others use melatonin or mild sleeping medications. Relaxation apps or cd's.
You have been given a chance to make your life so much better. Once you settle in, you should feel the benefits of more energy, better mood, etc.
And lastly, you have landed in a wonderful forum. We are all here to cheer you on.
Lori