Adjustment issues

[CPAP Newbie]

Hi everyone. I recently acquired a CPAP machine about 3 and a half weeks ago. Recognizing there would be an adjustment period, I did not expect perfection right out of the gate. However now that it has been almost a month, I am experiencing issues that are more debilitating than the lack of sleep I was experiencing (but not realizing) before.

First issue is with the mask, I have the wisp nasal mask and the lower straps move up throughout the night and pull upwards on my ears. I've got a call into my respiratory therapist to see if we need to make adjustments or possibly switch to a different mask.

Second issue is with severe muscle tension and now, lower back pain. I am finding myself waking up in the middle of the night all tensed up for fear of moving and dislodging the seal on the mask. The tension is so severe that my fists are clenched and now I am experiencing lower back pain that is so hurtful, I cannot stand on my feet for long periods of time.

Third issue is with my jaw and mouth. As a former snorer, I slept with my mouth open. Now with the CPAP, my mouth is closed but it is creating a suction or vacuum inside my mouth at night that is strong enough such that my teeth hurt from the constant suction inside my mouth. Added to that now is I am clearly clenching my jaw which I believe is also triggering headaches that I am struggling to battle.

Please know that despite all this, I am faithfully using the machine all night, every night, since I got it. However, all the remarkable results I have read about feeling so well rested, increased energy, instant boost in well being are absolutely non existent for me. I am instead finding myself waking up several times a night, feeling not at all rested in the morning and when I am awake, I am in pain from my back, a headache or muscle aches in my shoulders and legs. It is all very frustrating and would appreciate any insights and advice you may have.

[Julie]

Why are you forcing yourself to lie so rigidly? If the mask doesn't fit properly and leaks if you move then you need to adjust it or try other masks - preferably 'full face' ones that allow you to breathe with your mouth open without losing therapy air (which you must be doing now). Most of us go through at least a few masks before finding the right one, but for someone who knows they mouth breathe there are quite a few available (look on Cpap.com under Masks - full face - to see options. Once you're fittted properly, you should be able to move in bed however you want to (and I have stenosis as well as a bunch of other back issues).

[Luthie2006]

I am a Newbie too and also use the WISP nasal mask. I know that I did wake up with air in mouth like a balloon even keeping my lips just a little bit opened.
I swallowed the air I guess and try to start again. I now use a chin-strap and it helps some. For me, I really did not want to go with a full face mask and would prefer the chin strap given a choice. At first I was against the chin strap and now I don't mind it. Have you thought of that? I don't move around very much either in bed because with the chin strap on my head first the WISP straps need more room so I use a LARGE WISP mask instead of the medium I was given. It is much more comfortable for me and I am afraid of the leaks as well. Maybe you can consider a chin strap and see if that works?

[nanwilson]

Relax... its not necessary to stay so rigid. We all flop around to some extent during the night and not worry about dislodging anything. As Julie mentioned, if the mask is bugging you then go back to your supplier and get another. Most of us have gone through about a dozen masks before we find the "right" one for us. Most suppliers have a program where you can exchange masks within a certain time frame until you are satisfied. If they won't exchange for you and you have to pay out of pocket, let us know, we all have many masks and frequently pass unused or slightly used ones to others here.

[SleepPlease]

I'm going on a month now with the same exact issues. I've also got that Wisp nasal mask, and it's hands-down the best out of several that I tried during my 3 night titration test from Hades. My SD card data shows I've got a 100% seal most nights. But that's because I've been sleeping only on my back, which is problematic because prior to my bondage to my machine (yes, I realize it's saving my life), I tossed and turned naturally without waking up. I can lay on my side with the Wisp, but I have to adjust it slightly when I turn or I'll lose my seal. This means turning on my side is a very conscious ordeal now, which means less sleep overall.

I'm completely used to the machine now. I don't even bother ramping the pressure and I fall asleep pretty quick. But I consistently wake up at 4:30 on the dot, and I've concluded that it's my back hitting a discomfort threshold. So I wake up to readjust for side sleeping, which works until my body wants to turn back or onto the other side-- all scenarios that require conscious adjustment. Long story short: I sleep pretty comfortably from bedtime (12:00 am) to 4:30 am. Then I sleep horribly-- if at all-- until the alarm rings. A month into this and I'm still as tired at work as I was prior to the machine (albeit with less heart damage, I suppose).

The teeth clenching is less an issue for me, but still happens most nights. I've thought about switching to a full face mask, but in all my trials I had never been able to maintain a good seal on one. I'm inclined to keep the nasal and maybe save up for a bed that's conducive to back sleeping.

[CPAP Newbie]

Thanks for the insights. I prefer to not go to a full face mask, but was able to get an appointment at the supplier's office this afternoon to try other mask models. If a full face mask is the right fit, then that is what I will move to. I think my issues with sleeping so rigid are more psychological than anything. I have had minimal instances with the seal breaking on the mask and while I tell myself that I can simply relax and just go to sleep, I can't get my body to follow that path I have never had issues falling asleep before, or staying asleep and now this change to the mask is driving me batty. I had been hoping for the "amazing differences" I have read about and they just aren't there....yet.

[CPAP Newbie]

Sleep Please - YES! this is exactly what I am feeling!!! I sleep really well for about 4 to 4 and a half hours. I get situated on my side and sleep like a champ but then get uncomfortable and have to wake up, readjust everything and go back to sleep but repeat this episode over and over until the alarm sounds off. While I appreciate the health benefits the machine has afforded me, I see only detriment and not improvement in my overall well being. I'm back to the supplier's office this afternoon to meet with the therapist - hopefully to get some relief....

[SleepPlease]

I had been hoping for the "amazing differences" I have read about and they just aren't there....yet.

Yeah, that's my #1 beef with my provider. All kinds of promises of amazing differences, boundless energy, feeling younger, losing weight, blah blah. I'm pretty convinced those don't happen. Obviously I've got to allow for a familiarization period before I can make any definite conclusion. But so far, aside from the fact that the therapy is mitigating a very serious health risk, I'm quite unimpressed with the day-to-day results. What I'd give to be able to fall asleep without the machine...

[chunkyfrog]

Some people do have immediate results. The rest of us take longer.
I needed several days to leave it on all night.
Additional energy sneaked up on me very slowly--over several months.
One day, I realized I was keeping up with the dog without getting winded.
You may not consciously feel the difference, but your body will,
especially the brain. I still forget things, but now I remember them in a smaller time frame.

[bwexler]

Something that may help with repositioning (tossing and turning) during the night. You can position a hose hanger so your hose comes from above your head. There are commercially available devices, flower pot hangers, I made one from a wire coat hanger. The commercial ones I have seen go under the matress to hold them in place and then rise over your head to position your hose. The one I made hung from a cabinet handle above my bed in my motorhome. No that I am in a house I have to recreate it. Different furnishings require different creativity.

[robysue]

First: Welcome to the forum CPAP Newbie and SleepPlease.

Next: It does get better with time. Lots of newbies start out trying to sleep as still as possible for fear they're going to jostle the mask and start a leak. In time you learn that (1) a good seal is pretty resistant to moving around in bed and (2) a small leak is not the end of the world. Eventually you'll figure out how to make minor mask adjustments in your sleep. Eventually you'll learn how to turn over in bed without the need to wake fully up. Eventually you will figure out a way to sleep in a position that is pretty darn close to whatever your favorite sleeping position was pre-CPAP. And that even includes sleeping on your stomach. Eventually your brain will learn to NOT go into WORRY ABOUT THE MACHINE AND MASK MODE every time you put the mask on and lay down in bed.

But it does take time, and for some of us it takes longer than the DMEs and docs expect. And the start of learning how to sleep with a PAP is giving yourself permission to lie down in a way that is comfortable rather than lying down in the way you think you have to lie just to keep the mask from leaking.

Big hint: It helps to do the final mask adjustments AFTER you are lying in the position you intend to sleep in at the beginning of the night. So if you're a side sleeper, put the mask on and turn the machine on and then lie down on your preferred side and THEN do the final mask adjustments. Yes, it will be awkward at first---we're so used to doing things sitting UP rather than lying down. It also helps to realize that there's nothing special about having everything "just so". It took me a while to figure out that for me, I do better if the straps on my Swift FX are NOT adjusted symmetrically. I am more comfortable (and hence tend to sleep better) if one side is looser than the other side.

And while you're still in the adjustment period, it helps to remember that very few people experience a miracle of suddenly waking up one morning feeling fantastic with boatloads of energy and emotional bliss that lasts the entire day. A few people start to feel noticeably better in a few days or a week or so. But for many of us, it takes several weeks to a few months just to work out the logisitics of sleeping comfortably with this alien on our face. And then it takes several more weeks to a few more months of sleeping well with the mask all night long, every single night before we start feeling better---the damage the untreated apnea has caused your body takes time to heal. And for some of us, the "feeling better" is so subtle that we don't ever experience a "Eureka! I'm feeling GREAT this morning thanks to CPAP!" feeling. Rather, we start to notice that little things start to get better. And our energy slowly improves. For many people, the first positive sign that PAP is doing something is not waking up in the middle of the night urgently needing to go pee. For some people the first positive sign is a decrease in the morning headaches. In my case, the first sign that PAP was doing something positive rather than negative didn't occur until I'd been PAPing for about 4-5 months: I started waking up noticing that my hands and feet no longer hurt in the morning. That's still the most major difference that PAP has made for me: No more hand and foot pain when I first wake up.