New on the cpap

[robysue]

I have had issues with sleeping for years

During my titration test, the technician kept coming into my room and changing the mask as I stopped breathing everytime I fell asleep. At that time, they said they didn't get enough data from the test as I was awakened over and over and then insomnia set in.

So I am not getting much sleep, maybe 4 to 5 hours a night.

Sleepy2145,

A CPAP is not a magic solution to all sleep problems. It splints your upper airway open and keeps it from repeatedly collapsing dozens of times each hour. But it does not directly address any other cause of "bad sleep." And it sounds like you may have other sleep issues as wello as the OSA. And in that case, CPAP will be necessay for a truly good night's sleep, but it will not be sufficient all by itself to guarantee a good night's sleep. You will need to address those other issues as well.

You've identified restless leg syndrome as an issue and you are currently on medication for that. Were you on medication the night of the sleep test? That's relevant in interpreting the data gathered by the leg sensor. And it may be that you have periodic limb movement disorder as well as (or ibstead of) the restless leg syndrome. Make sure you ask the doc about what the sleep test indicates about your leg movements.

You also appear to have some long standing insomnia issues. CPAP won't directly address insomnia either, and in the short term it can aggravate insomnia pretty intensely. There's a lot going on and it takes some of us a very long time to teach our bodies and our conscious mind and our unconscious mind to accept this beast that's lying on top of our face every night. And that can trigger anxiety and worry, which in turn feed the insomnia.

One key aspect of getting through a difficult patch of insomnia is to recast the language about sleep and focus on the positive: Instead of "I am getting only 4 to 5 hours of sleep with the mask", think of it as "I am now getting as much as 4-5 hours of sleep with the mask". Yes, this is a syntactical mind trick, but the mind is a powerful thing. The focus of the first statement is the unstated worry that you will never manage to get more sleep with the mask; the focus of the second statement is the hope and expectation that things will improve and that you will eventually be sleeping as long as you need to with the mask on your nose.

I am so confused as to whether this is working or not. I know I have to give it more time but I wasn't expecting this beginning period to be so difficult

Some of us have a much rougher time than average. It took me well over six months to finally start seeing a real benefit from the machine in terms of daytime functioning. And interestingly enough, that final part of my adjustment only came after I started tracking several daytime issues known to cause me problems. The journal entries about joint pain helped me see that the CPAP was indeed responsible for a substantial decrease in the amount of daily pain I was in---even though I was getting around 4.5 to 5.5 hours of sleep for example.

So it has been 11 nights on the Cpap machine and things are not going well. The jerking has slowed down, that part is good.

That's far more positive progress than you think it is. This is early evidence that long term the CPAP will do you a lot of good.

But it is easy to lose sight of the small incremental steps of progress when you are struggling. The best way I know of not losing sight of the small victories is to write them down in a daily log of some sort.

I have only made it two nights with the mask on all night.

Focus on the positive: I have kept the mask on all night for the last two nights! For many newbies, those first few nights of keeping the mask on are causes for celebration!

The mask is not a good fit.
...
The mask I have now, which I believe is too small has made a sore spot on my nose. I have to take if off around 3 am every morning as it is hurting my nose. The only position I can sleep in is flat on my back, don't dare move as the masks moves and leaks badly. Sometimes getting in on takes several minutes to adjust it so it isn't leaking. How much leaking should I expect? It is impossible to sleep while it is leaking and blowing into my eyes and around my mouth and the swooshing of air is loud. If I close my mouth, it leaks so I have to concentrate on dropping my jaw open so it won't leak. Then it slides up my nose and I start all over again. Can anyone tell me it this it typical or is this mask really a bad fit?

As others have already chimed in, these are all signs of a very badly fitted mask. Mask fitting is at least as hard as properly fitting a new pair of shoes, if not much harder. And yet the average quality, full service shoe shop spends substantially more time fitting a customer's shoes than a DME spends fitting a mask.

With a properly fit mask, you should be able to sleep in any position---although it may take some problem solving to figue out where the mask and the bed pillows need to be relative to each other. And a spcial CPAP pillow may help.

And you should be able to move around in bed and shift your position---although it takes some time to learn hoe to do this feat. For many people hanging the hose overhead really works wonders on giving the the freedom they need for turning over in bed.

Anf for the inevitable leaks, once you have a better fitting mask, the number and severity of them should decrease. In the meantime, sleep with a cloth handkerchief over the eyes---that will help protect them from the leaks.

[sleepy2145]

So you guys have given me a lot to think about and a lot to ask my Pulmonologist when I see him tomorrow. A little history on me: I am female, short and not heavy, I do not snore, I am not the typical type to have sleep apnea. It was a surprise to me!
I do not know what kind of apnea I have. Now I have been asked what my breakdown is regarding Obstructive vs. Clear Airway apnea. I will definitely ask my doctor tomorrow about this. I hate to say I know so little about this. I will be taking my SD card with me to my appointment and hopefully will learn more about my apnea. I want to thank you all because without all your input and questions, I would not know what to ask.
Wish me luck tomorrow. Do they have a class where you can learn all this?
By the way, again the technician ordering my mask can't tell me when it is coming in, talked to her again today with no help, I am sure she is tired of me calling. I shouldn't have to wait so long for a correct fitting mask.

[Julie]

Hi - You can take a sort of class if you go to the lightbulb at the top of the pages here and start reading all the links - amazing amount of good stuff!

As far as different apneas go, there is 'obstructive' which means it's likely something like your soft palate or tongue gets in the way of your airway when you sleep (and it relaxes), plus you can have 'positional' apnea that basically means you have almost none in a particular position (or more), but have enough when e.g. on your back, to register on a sleep study and be prescribed Cpap, yet there are a few people who have worked through that over time and now no longer use a machine (tho' do wear an oximeter on occasion) as long as they don't sleep in the wrong position (achieved using various types of foam 'wedges' you can buy), and there is a small percentage of people with 'clear airway' apneas (we tend to call them 'centrals' and you likely had - seen on the sleep study, and may still have, a few just as you nodded off) and people get very worried that they have 'central apnea' and will need a different type of cpap that's more expensive, but it's actually pretty rare, tho' most of us have the odd one on occasion and it's thought to be of neurological origin.. what happens is that your brain essentially forgets to tell your body to breathe (tho' it's not the same as when you're awake and preoccupied, and then remind yourself consciously to breathe). They are diagnosed in sleep studies.

Now that I've probably confused you completely, hope you can find more answers!

[sleepy2145]

To Robysue
I started a calendar the first week with problems I was having. I will now take your suggestion and add the positive things that are happening. That is a great idea to track the changes, even the positive ones. You are right, it is easy to get lost in the negatives than to realize the positives. I did believe at the beginning of all this that I would experience a drastic positive change, I now see that that change may still be coming, just not as fast as I expected but there are positive changes and I need to focus on them. Thanks for grounding me.
To Julie
I will totally go to the lightbulb at the top of the page. I was completely unaware of it. Thanks.

[zoocrewphoto]

With a properly fit mask, you should be able to sleep in any position---although it may take some problem solving to figue out where the mask and the bed pillows need to be relative to each other. And a spcial CPAP pillow may help.

And you should be able to move around in bed and shift your position---although it takes some time to learn hoe to do this feat. For many people hanging the hose overhead really works wonders on giving the the freedom they need for turning over in bed.

Anf for the inevitable leaks, once you have a better fitting mask, the number and severity of them should decrease. In the meantime, sleep with a cloth handkerchief over the eyes---that will help protect them from the leaks.

I would like to second this. I am only 10 weeks into treatment. At the sleep study, the sleep tech fitted me perfectly with a Quattro FX. I asked for that mask at the DME, and that is what I use most nights (I have a hybrid mask as well). The first couple weeks, I really struggled with getting it to fit correctly without leaks. I knew it could fit right because it did at the sleep study. Some of the improvement came from tips here on the forum. Preventing mask leaks at the eyes meant moving the mask down a little further on my face. And that helped a lot. I also learned to adjust both the bottom and top straps to get it more secure. I got new smaller headgear today to solve that problem as my headgear was too big for me.

But after the first few weeks, I seemed to get the hang of it. I could get it fit within the first 1-3 tries. And sleep for a good 3-4 hours before waking up and needing to adjust it. I have also learned to sleep with my face smushed into my pillow any way I want, and it doesn't cause problems. I actually sleep on my side MORE than I used to. I thought side sleeping would be a problem, but it really isn't at all. The first week or so, I was using my hand to create air between the mask and pillow, but I guess I just learned to adjust, and now it works fine.

For the new person struggling with getting a good fit of the mask (and this could be any new person, not just this particular person), you could need a different mask, or you could just need some time to get used to the mask. I really don't know how to tell the difference. A good DME will help with this. Many aren't very helpful. For me, it helped to ask on this forum, explaining the exact issues I was having, and then try the advice I received. I did also get a second mask, which is okay, but I still prefer the first mask. It has never caused me any pain. My only problems have been the leaks, so I just needed to learn how to solve them. I still get them a bit, but not nearly as bad. And I can usually fix them quicker now.

[Wonderbeastlett]

I am new to cpap therapy as well. Almost 3 weeks now! I have the mirage quattro which is a full face mask and I had so many problems with leaks! The leaks were happening around my nose so I bought the gecko nasal pad. It's a gel like pad that goes over your nose and you gently place your mask on top.

Now with my mask I have a nose "button" so to speak that tightens on your nose to further stop leaks. Once I had my gecko, I just let the top remain loose and tightened up the headgear around my mouth and it's been working pretty good. I've got the leaks almost under control!

I'm not sure how your mask works but using a nasal pad like the gecko would help stop the leaks and the pressure on your nose. I know it can be painful and irritating! I'm still new to this and working with my machine! The best advice I have is to try the gecko and try to get your mask to fill up with air like a pillow on your face before tightening the straps. Also try putting your mask on lying down on your back not sitting up. That's what's helped me thus far! Hope this helps!

[sleepy2145]

So I am now on the cpap machine for 19 days and still not going well. I realize that my DME is not very good. She ordered me a new mask on Friday, July 6, and I still don't have it. She went on vacation in the meantime and didn't tell me leaving the other DME not assigned to me to try to fix things. She brought me some masks to try, I tried the first one and as far as I could tell, it was better. I am not able to sleep with the mask on, it is noisier than the last ill-fitting mask. So I called my DME again today, 11 days after she apparently ordered my new mask, she was confused, I don't think she remembered me. My doctor was dissapointed and called a new company to take over my care, I have not heard from them since Friday. My question is this: does anyone have a company they are really happy with in the San Francisco Bay Area? I live 35 miles north of S.F. Any help would be appreciated. I currently am with Lincare.

[sleepy2145]

Well things have finally changed. It has been 3 weeks of 2-3 hours of sleep per night so I called my Medical Provider and insisted on a new mask. They didn't want to give me a new one but wanted to make the last mask fit (obvious to me now that it was a bit big). Thanks to the tab title above named "Product Challenge", I got the mask I wanted after reading the testimonials submitted by fellow CPap users. I now have slept for two nights and I can't tell you how good that feels. For all of you out there who are struggling, read all you can here on this site and act upon your instincts and things will get better. I want to thank this site for all the support and help I was able to get. Life is now getting better. Thank you, Thank you, Thank you!!!