Hitting a wall, not sure I can continue right now

[zeeclass]

Last night, after waking up AGAIN 3 hours into the night, feeling uncomfortable and stiff, I took off the mask, turned off the machine, took a tiny bit of Ativan and went back to sleep without any of the equipment.

For the past few days I have been absolutely exhausted, no matter how much sleep I seem to get. Every night for the past week I've been waking up every 2 to 3 hours. In the morning my back and neck are stiff and painful from (1) my pillow and (2) not moving around enough in my sleep. I also notice that when I wake up in the middle of the night, I feel terribly boxed in from all the stuff strapped to my face (mask, chin strap, sleeping eye mask, ear plugs).

I have a history of depression and was doing OK in that realm before starting cpap. Now that my sleep keeps getting interrupted, it is starting to come back, which is a BIG warning sign for me. I also can't keep taking Ativan because that drug tends to make me feel angry and depressed in the morning.

I have sent for two different larger cpap pillows from the Contour company. I have decided to stop the cpap therapy until they arrive.

Also, I am starting to wonder if a nasal mask is the right thing for me, and if I should try a full face mask. I have noticed that when I begin to relax and fall asleep, my mouth will open and I will snore a little bit (not loudly). This is the way my body naturally wants to relax. But with the nasal mask, my mouth needs to stay shut. At first I didn't use a chin strap, but I found myself awakening several times during the night making weird sounds, and realized that my mouth was open. So I tried a chin strap, but it's not comfortable and only adds to that strapped-in feeling.

I'm not claustrophobic. I can wear the mask just fine at the beginning of the night, no problems. But what I think is happening is that I'm NOT AT ALL COMFORTABLE with all this stuff on my face and head, and then when you add the discomfort of the pillow into the mix, it's too much for me to deal with.

My husband has a full face mask and he is due to get a new mask in the next week. I was thinking that when he gets his new mask, I will try his old mask and see if it works any better for me (in terms of me being able to naturally open my mouth in my sleep).

If that doesn't work, I might try nasal pillows, but then I'd be right back to the need for a chin strap. The ear plugs are necessary because our teenagers are loud, no matter how quiet they try to be. We have a white noise generator, but when we make it loud enough to drown out the kids, the loudness of the sound makes my ears ring. And I've noticed that if I don't wear ear plugs when I use my cpap, THAT makes my ears ring really badly.

The eye mask is usually necessary because the bedroom just isn't dark enough when the sun starts to rise, even with a blackout shade.

When I started this, I had no idea that my regular pillow would cause me problems or that I might need a chin strap. I didn't have sleep problems or insomnia before starting cpap therapy and I don't want to develop them because of it. I also have to be careful about my depression. I don't want to have to go back on SSRIs because I have had a lot of problems with the side effects.

[cflame1]

why don't you try napping with it... sometime when he isn't using it? Just to see if it might fix your problem?

After all it might be the wrong size for you.

[zeeclass]

I'd thought of that, but I usually don't take naps during the day. Although lately I've been so exhausted that by 4 p.m. I just NEED to lie down and find myself sleeping for about 15-20 minutes with the TV on in the TV room.

[cflame1]

so make a point of going and having a nap... in bed with your hubby's mask on.

[BlackSpinner]

You are rewarding yourself by taking off the mask. Bad practice.
You may be feeling depressed by the lack of comfortable sleep, plus oSA is strongly implicated in depression. Which means you have a double reason to make this work. When you get your full face mask, practice watching tv with the gear at full power. Chose to make this work.

[Paper_Nanny]

As already mentioned by BalckSpinner, rewarding yourself for taking off the mask is a bad practice and not something you want to get in the habit of. Also, it is so very important to treat the SA, because of all the potential health problems associated with it. And, you do have to deal with the problems with an attitude of choosing to make it work. You cannot give up!!

That all said... It didn't sound to me like you were giving up, but more like you see certain obstacles in your way (the pillow, for example), you have taken steps to get rid of those obstacles (ordered other pillows), and now, you are waiting. And while you wait, you are choosing to not use the equipment so as not to build up resentment and hatred toward it. Also maybe trying to get a little sleep so you are ready to try again when the new pillows get there.

I think the key is that if it isn't working for you, figure out why!! And do something about it!! And never say, "What I am going to do about it is give up on therapy altogether." Because that is not a good answer.

Deborah

[robysue]

Chiming in with my two cents:

First: I agree with BlackSpinner---you are rewarding your subconscious mind and probably your conscious mind as well when you consciously take off the mask and choose to go back to sleep without the mask. Every time you consciously allow yourself to fall asleep sans mask, you are undermining the need for your conscious mind, your unconscious mind, and your body to all make a deep and profound connection that Time to Sleep = Time to Mask Up. So don't do it.

Second: Since you have no objections to trying a FFM, do so. It could well be that you are one of those people who feels MORE comfortable with a FFM than with all the additional contraptions you need in order to make a nasal mask/pillows work for you.

Third: You may need to apply some sleep hygiene techniques to the problem of waking up after 3 hours and having a tough time getting back to sleep with the mask on. You say you're taking Ativan to help you get back to sleep, but that you "can't keep taking Ativan because that drug tends to make me feel angry and depressed in the morning." Sounds like a very good reason to avoid the Ativan. As counterintuitive as it sounds, here's what I'd recommend when you wake up 2 or 3 hours after first going to bed:

Step 1: Assess the situation. If there are things you can do immediately to address the comfort issues, do so. This includes really basic things like remembering to turn over in bed as well as the more obvious "fix the leaks". If you are NOT sleepy OR if you are emotionally upset, get out of bed since it is nigh impossible to fall asleep when you are NOT sleepy or when you are emotionally upset or angry regardless of how tired or exhausted you feel. Note that feeling sleepy is NOT the same as feeling tired or exhausted.

Step 2: If you are feeling sleepy and you are not upset or angry, try to allow yourself enough time to get back to sleep---as in 15--20 minutes before deciding that you cannot get back to sleep. But if you cannot get back to sleep in that time and you find yourself lying awake and becoming less sleepy OR more uncomfortable OR angry OR upset, then GET OUT OF BED.

Step 3: If you have to get out of bed because you cannot get back to sleep OR because you are ANGRY or UPSET, then go into another room and simply sit in the dark for a few minutes to settle yourself down. If you have to do something, make yourself a cup of warm milk or sleepytime tea. Or read a boring book in the living room. Or do a crossword on paper with a pencil. But do NOT get on the computer. Once you start to feel sleepy enough and calm enough to face masking back up, go back to bedroom, mask up and try to get back to sleep.

Repeat Steps 2 and 3 as often as you need to. And---regardless of how hard it is, make yourself get up at your usual time every single day regardless of how little sleep you actually get.

Good luck

[zeeclass]

As already mentioned by BalckSpinner, rewarding yourself for taking off the mask is a bad practice and not something you want to get in the habit of. Also, it is so very important to treat the SA, because of all the potential health problems associated with it. And, you do have to deal with the problems with an attitude of choosing to make it work. You cannot give up!!

That all said... It didn't sound to me like you were giving up, but more like you see certain obstacles in your way (the pillow, for example), you have taken steps to get rid of those obstacles (ordered other pillows), and now, you are waiting. And while you wait, you are choosing to not use the equipment so as not to build up resentment and hatred toward it. Also maybe trying to get a little sleep so you are ready to try again when the new pillows get there.

I think the key is that if it isn't working for you, figure out why!! And do something about it!! And never say, "What I am going to do about it is give up on therapy altogether." Because that is not a good answer.

Deborah

Exactly, Deborah. I really want to be able to sleep with the cpap the entire night, or at least half the night. But night after night of feeling uncomfortable, followed by exhaustion by 3 p.m. and depression once again lurking around the corner is very bad for me. Not to mention how stiff and achy I also feel because of the pillow situation. I am giving myself a break from it for a few days to be able to catch up on my sleep. When the new pillows arrive I'll try again. Even if my non-masked sleep isn't the greatest sleep (I expect to start twitching again without the cpap) at least it will be 7 to 8 unbroken hours, which is what I need. Maybe if I wake up early after 5 to 6 hours without the mask, I'll just put it on for the rest of the morning, so I'll use it a little bit. But my goal is to find a way to be able to continue my cpap therapy and wear it all night the way my husband does. I figure that this is a process, and I just have to find the right combination of things that work.

On another subject, I saw my orthopedist today...I had gotten a new MRI of my back last week. Things are pretty much the same except a bit worse with my discs degenerating a little more between L4 and S1, which explains the chronic recurring sciatic sensitivity. No Zodiac boat rides, horseback riding, or jogging in my future! And I definitely have arthritis in my back. I am going to start physical therapy soon to help make me stronger. I'm 50 years old but not in good shape at all, which I am very unhappy about. I'm very weak with no core strength and I need to change that or it doesn't bode well for me in the future. I wish "Dr. Crusher" or "Bones" could wave a magic device over my back and give me new discs....sigh....when will they invent tricorders or transporters? Well, I'm crossing my fingers and hoping that this really great new physical therapist I found can slowly and carefully whip me into shape.

[zeeclass]

Chiming in with my two cents:

First: I agree with BlackSpinner---you are rewarding your subconscious mind and probably your conscious mind as well when you consciously take off the mask and choose to go back to sleep without the mask. Every time you consciously allow yourself to fall asleep sans mask, you are undermining the need for your conscious mind, your unconscious mind, and your body to all make a deep and profound connection that Time to Sleep = Time to Mask Up. So don't do it.

Second: Since you have no objections to trying a FFM, do so. It could well be that you are one of those people who feels MORE comfortable with a FFM than with all the additional contraptions you need in order to make a nasal mask/pillows work for you.

Third: You may need to apply some sleep hygiene techniques to the problem of waking up after 3 hours and having a tough time getting back to sleep with the mask on. You say you're taking Ativan to help you get back to sleep, but that you "can't keep taking Ativan because that drug tends to make me feel angry and depressed in the morning." Sounds like a very good reason to avoid the Ativan. As counterintuitive as it sounds, here's what I'd recommend when you wake up 2 or 3 hours after first going to bed:

Step 1: Assess the situation. If there are things you can do immediately to address the comfort issues, do so. This includes really basic things like remembering to turn over in bed as well as the more obvious "fix the leaks". If you are NOT sleepy OR if you are emotionally upset, get out of bed since it is nigh impossible to fall asleep when you are NOT sleepy or when you are emotionally upset or angry regardless of how tired or exhausted you feel. Note that feeling sleepy is NOT the same as feeling tired or exhausted.

Step 2: If you are feeling sleepy and you are not upset or angry, try to allow yourself enough time to get back to sleep---as in 15--20 minutes before deciding that you cannot get back to sleep. But if you cannot get back to sleep in that time and you find yourself lying awake and becoming less sleepy OR more uncomfortable OR angry OR upset, then GET OUT OF BED.

Step 3: If you have to get out of bed because you cannot get back to sleep OR because you are ANGRY or UPSET, then go into another room and simply sit in the dark for a few minutes to settle yourself down. If you have to do something, make yourself a cup of warm milk or sleepytime tea. Or read a boring book in the living room. Or do a crossword on paper with a pencil. But do NOT get on the computer. Once you start to feel sleepy enough and calm enough to face masking back up, go back to bedroom, mask up and try to get back to sleep.

Repeat Steps 2 and 3 as often as you need to. And---regardless of how hard it is, make yourself get up at your usual time every single day regardless of how little sleep you actually get.

Good luck

Very good advice, and I totally agree. I knew last night that I was upset and frustrated and I wanted to take some Tylenol because my back felt really stiff. So after a few minutes, I got up, took some Tylenol, then made myself some oatmeal and watched some really relaxing TV shows. I also took a very small amount of Ativan to help relax me. So by the time the hour had passed, I found myself starting to nod off, and I got back into bed. Normally I try not to eat before sleep because of reflux (not to mention it's a good way to gain weight), but it was OK.

Anyway, yeah if you feel angry or upset it's really hard to just roll over and go back to sleep unless you are really exhausted (like from jet lag).

I also have some relaxation apps on my iphone that help sometimes.

[datara]

Hi zeeclass, I also suffer from reflux (with hiatus hernia and perforations of the esophagus) CPAP has actually been very helpful with this as I was not equalizing pressure with enough air intake, I would wake up with severe back and chest pain, since I have gotten used to the cpap I have noticed a big difference. According to my doctor the reflux is reduced due to breathing better at night.
I might get flamed for this as some may not consider it very good "sleep hygene" but I keep my laptop beside my bed next to my CPAP, i plug in headphones and listen to relaxation tracks as well, but not just any relaxation, they are called binaural beats, I won't go into a detailed description they are easy enough to look up. May be placebo, don't know, but they sure have reduced my anxiety levels.
I will also cue up something on you tube in the event that I wake up, a lecture of some sort, usually theoretical physics, or philosophy. Things that interest me but where the monotone lecturer lulls me back to sleep. Keep in mind that the majority of healing takes place while sleeping. I like toys, new TV's, computers anything electronic, so the CPAP to me was a new toy, I had been in to the relaxation and binaural beat thing long before I was diagnosed, and I knew that mindful breathing was essential, so the CPAP was just a tool for for me to meditate more effectively. I guess what I am trying to say is
to try to look at the situation from another angle. "When we change the way we look at things, the things we look at change"

I wish you luck

[Eureka]

I'm sorry for the problems you are facing. Be nice if just one magic solution would solve them all. But alas...
I would like to encourage you to try the full face mask. Many seem to have had bad experiences with them, but I have found that it really works for me and eliminates all the chin straps, mouth taping etc.
Discouragement sometimes creeps up on us when having multiple problems, and then takes the steam out of us for trying to solve the problems one at a time. Hang in there -- and know you have a lot of folk on this forum who have gone through (or are going through) similar situations. We are pulling for you.

[Vader]

On another subject, I saw my orthopedist today...I had gotten a new MRI of my back last week. Things are pretty much the same except a bit worse with my discs degenerating a little more between L4 and S1, which explains the chronic recurring sciatic sensitivity. No Zodiac boat rides, horseback riding, or jogging in my future! And I definitely have arthritis in my back. I am going to start physical therapy soon to help make me stronger. I'm 50 years old but not in good shape at all, which I am very unhappy about. I'm very weak with no core strength and I need to change that or it doesn't bode well for me in the future. I wish "Dr. Crusher" or "Bones" could wave a magic device over my back and give me new discs....sigh....when will they invent tricorders or transporters? Well, I'm crossing my fingers and hoping that this really great new physical therapist I found can slowly and carefully whip me into shape.

I think it's very good advice that the other posters have given in regard to the importance of staying with your cpap therapy. You must make this work.
Your physical therapy is also extremely important, and getting your rest will help you in having a positive outlook towards your physical therapy.
I've suffered with similar spine problems as you, and a GOOD "hands on" physical therapist is invaluable! I was very blessed to have found an excellent PT who was extremely helpful in getting me motivated to get better. You have to keep yourself in shape to slow down the effects of arthritis in your spine. This will mean lifelong commitment to routine exercises. Most are very easy, but they have to be done. I wasn't sure I'd be able to walk without a cane again, but now I'm doing pretty good for an "old man"

[chunkyfrog]

Even your back can benefit from determined CPAP therapy. (probably healing due to oxygen)
I used to wake up stiff and achy--especially my back and neck.
No More--Keep trying; you will not regret it.

[Brent22]

Hmm in this scenario physical therapy is the only option it take little bit more time but the results of this therapy is quite impressive and quite cool...........