apap machine usage--worst than my WORST night w/o a machine?

[Fitness Seeker]

I'm thankful we have this "support group". Just discovered this site yesterday.

Here's my story--I had tested and was diagnosed w/ UARS the past 2 months at Stanford (overnight, titration overnight). Just got the apap 2 days ago and used it immediately. Had insomnia for 20 yrs now. Used the machine for the past 2 nites for 7 hours each night. 1st nite was hell. 2nd nite was just as bad. I kept the mask on, never taking it off. Didn't even get up to use the bathroom until I decided to get out of bed. Straps and mask was uncomfortable (I don't like to be attached or restricted at all). In the morning from both nights, my eyes were all puffy (like those college nights pulling all nighters). I was barely able to open my eyes. I felt exhausted and unfunctional. The AHI on screen read .8 from 1st nite and .1 from 2nd nite.

Could someone tell me if this is normal? To put the machine on and feel it being one of the worst nights you had? I slept better w/o a machine for i could have gotten at least some rested sleep for a few hours. Clearly i wasn't getting any deep sleep as the looking at my face could have told you that and I felt unable to even function.

I called the DMV but she told me to keep trying. She even suggested I call the MD to see if they could prescribe a sleep aid pill? Any input, suggestions? I never liked having a mask but if i'm getting all this air into my body, shouldn't i feel ALOT better instead of like someone ran me over? Thanks. Desperate to hear your stories.....

[Fitness Seeker]

BTW, I'm using the ResMed S9 machine, ResMed Altiva mask. Settings 10-13.

[Pugsy]

Welcome to the forum.

Perhaps you need a different mask?? We can't be expected to sleep while experiencing discomfort.
Check out the one I use shown in my profile below my post.

Also please formally register here at the forum then you can permanently add your equipment like I have. It's free and no spam. You can then also send and receive private messages.

wiki/index.php/Registering_Equipment_in_User_Profile

Which ResMed S9 machine? APAP? What pressure settings?
For full data machines (Autoset and Elite) there is free software to monitor your therapy in detail to make sure it is effective. Have you seen it to evaluate leak, etc.

[chunkyfrog]

So far the Swift FX is my most comfortable mask--I only use a full-face when my nose is stuffed up.
I have to wear a chin strap and masking tape--but, as long as it works.

[Emilia]

To use the forum features fully, you need to register and log in. Once you do that, your username will be in blue and be clickable. Until you do that, your are very limited in what communication can transpire between you and other members.

Please take a minute to go up to the User Control Panel (under search, top left) and then to your Profile and then Edit Equipment. Choose your gear from the pull down menus and the choose to show those in TEXT, not pictures. This will put your equipment at the bottom of every post your write automatically, like mine below. Those with the same equipment can help you better than having to constantly ask you what you use!

[Janknitz]

There is definitely an adjustment period with CPAP--you must give it some time. It's hard to get used to a heavy chunk of plastic strapped to your face, blowing air at you all night!

The mask is the key. Work closely with your DME to find a mask that seals well and can be comfortable for you. When you have mastered that, the rest will fall into place. You also have to learn to adjust the mask properly, so that it doesn't leak and it's not too tight. That just takes some time and experience.

Sounds like you have a DMV issue that is requiring you to be compliant with CPAP. I'm guessing either you drive for a living or you've fallen asleep at the wheel. In eitehr case, there's no fooling around here. You have NO choice but to learn to sleep with CPAP. So turn your attitude meter to "positive"--giving up is not an option.

Once you do learn to sleep with the CPAP, you'll be rewarded by feeling much better. Sleep apnea creeps up slowly--it's hard to understand its negative effects until they start going away.

[robysue]

Just got the apap 2 days ago and used it immediately. Had insomnia for 20 yrs now. Used the machine for the past 2 nites for 7 hours each night. 1st nite was hell. 2nd nite was just as bad. I kept the mask on, never taking it off. Didn't even get up to use the bathroom until I decided to get out of bed. Straps and mask was uncomfortable (I don't like to be attached or restricted at all). In the morning from both nights, my eyes were all puffy (like those college nights pulling all nighters). I was barely able to open my eyes. I felt exhausted and unfunctional. The AHI on screen read .8 from 1st nite and .1 from 2nd nite.

Could someone tell me if this is normal? To put the machine on and feel it being one of the worst nights you had? I slept better w/o a machine for i could have gotten at least some rested sleep for a few hours. Clearly i wasn't getting any deep sleep as the looking at my face could have told you that and I felt unable to even function.

Some of us have a much more difficult time adjusting than most. And the 20 years of insomnia? Well that could be one more fly in the ointment that you just have to deal with. But you could also be "lucky" and find out that once you are comfortable sleeping with the hose, the insomnia may naturally abate because its root cause was the UARS. Until you are a lot farther along in your therapy there's no way to tell. But in any case, I bid you a sad welcome into the CPAP & Insomnia club. More on this later.

I called the DMV but she told me to keep trying. She even suggested I call the MD to see if they could prescribe a sleep aid pill? Any input, suggestions?

Some people do find a short course of a prescription sleeping pill (such as Ambien) useful. But you need to listen to your own instincts here too: Have you tried sleeping pills for your insomnia? If so, how did they make you feel---both at night and in the morning? If things worked out well the previous times you took sleeping meds, they'll likely help you get over your hump. If they didn't work so well before, they probably won't do much more good this time.

I never liked having a mask but if i'm getting all this air into my body, shouldn't i feel ALOT better instead of like someone ran me over? Thanks. Desperate to hear your stories.....

You can't expect miracles. A lucky few get one and instantly feel better on CPAP. But you are two restless nights into therapy. You have to actually feel like you are sleeping with the machine before you can start feeling the machine making you feel better. And for most folks it takes several weeks to a few months to actually start feeling better. For a few unlucky ones (like myself) those "few months" drag on into many months.

I'm now 10 1/2 months into therapy and I am now finally feeling consistently as well as I did pre-CPAP and on some days feeling better than I felt before starting CPAP. In other words, my "average" day is now about the same, but my best days are better. Enough better where I'm greedy and want more of them. But getting to this point has been a very long and drawn out process with involving a lot of two steps forward, one step back type progress. And much of my difficult adjustment period has been due to some severe insomnia that set in during my very first three nights on the machine. And in dealing with the need to control both my chronic headaches and my allergy symptoms all at the same time as coming to grips with the fact that I'm now a hosehead.

So my advice: Keep plugging away at CHOOSING to mask up every single night until it becomes a bedtime habit---in spite of how hard it seems. Work hard on identifying your particular comfort issues and learning how to address them: Post them here and you'll get lots of suggestions to try.

And start dealing with that insomnia monster NOW, not later, because it's not likely to just disappear all by itself. You say you've had insomnia for 20 some years. How have you dealt with it in the past? Sleeping pills? If so, how well did they work? Sleep hygiene practices? If so, how well did they work? Or did you just largely ignore it because it hadn't gotten to the point where you felt like it was truly interfering with your daily life? You can start by reading my blog entry Taming the CPAP Induced Insomnia Monster. Some of what you read won't directly apply to your situation; but some of it will. And it could give you some useful ideas to try either with or without using sleeping pills.

[archangle]

Welcome Seeker.

Yes, please sign up for an ID and then look at the link at the bottom of my post on how to put your equipment into your profile so we can help you better.

You said "DMV." Do you mean the Department of Motor Vehicles or the DME (Durable Medical Equipment provider), the people who sold you your machine.

Unfortunately, quite a few people have at least some problems getting adjusted to the machine. We may be able to give you some hints.

What in particular bothered you? Just being connected to all the stuff? Was something itchy, irritating, too tight? Hard to breathe?

One trick is to wear the CPAP during the day when you're reading, watching TV, etc. This can help your mind get used to the equipment. You may be able to wear just the mask around the house, but do NOT attach the hose unless you're hooked up to the machine and it's blowing air.

Very few people get used to it in the first few days, but some people have a lot more trouble than others.

Once again, welcome and do fill in your profile. The specific equipment you have will have some bearing on the advice we give you.

[Fitness Seeker]

I have some Qs:
-what temp. setting am i supposed to set for the humidifier? The DME asked what my house temp was and set it 10*F higher.
-for those who are using software, are you buying this online and if so, how much is it? Is this software the same that one gets at the DME? For those who dont' have software, how do we get a print out, going to the Md and/or DME?

[Pugsy]

for those who are using software, are you buying this online and if so, how much is it?

Your ResMed machine uses ResScan software.
If you wanted to purchase it from DME it would require doctor's written order.
Latest version is available for free though. Just look in Uncle Bob's signature line.
memberlist.php?mode=viewprofile&u=38643
For a tutorial on how to use the software.
http://montfordhouse.com/cpap/resscan_tutorial/

Is this software the same that one gets at the DME?

Yes

For those who dont' have software, how do we get a print out, going to the Md and/or DME?

Yes, if they use a machine that collects full data they can request a printed copy from DME or doctor.
But it is very easy to obtain and use the software for ResMed machines. Also for the Respironics machines as well is the Devillbiss machines.

-what temp. setting am i supposed to set for the humidifier

Are you using the new Climate Line hose? Temperature depends on your own comfort level. I don't use ResMed machine so I can't advise in specifics. Might start with 80 and see how it feels to you. It is strictly a personal preference which temp suits your needs the best. Some like it warmer, some like it cooler.

[Fitness Seeker]

Ok, night 3 was bad. I couldn't even leave it on for the entire night. At 3am, after 4 hours, I just yanked it off. Sigh. AHI registered 0. I felt i was suffocating. I didn't feel i was breathing with the mask. I might go into the DME and have look at the data. And just lie down there for 30 minutes. It's frustrating.

How do i know which S9 model i have? The unit itself doesn't say. The prescription says I"m supposed to get an "auto" unit, so does this mean i have an apap? Could i use it w/o using the humidifier? I had the hud. temp around 10*F higher than the home temp as the DME had left it. My lips are so dried even though i used it only for 4 hours. I'll try lowering the temperature alittle bit. i just don't know how I could go to work in this shape. I can barely walk around the house and function.

[Mary Z]

Can you access your settings to find out if you have an AUTO or CPAP, or ask the DME? If you don't know how to access the settings http://www.apneaboard.com has the manuals available, or again, ask the DME. You have gotten some good advice. It seems the mask is not fitting right, or is the wrong mask for you. It is likely to feel strange on your face, but should not be uncomfortable, or cause puffy eyes. When you get the mask straight and have some time under your belt you should start feeling better. Three nights is not a good trial. None of us like to be tethered to a machine, but have made a commitment to our health and have the determination to solve each and every problem that comes up so that we can be compliant with our theray. You are doing the right thing by reaching out on the forum. Good luck, hang in there. Keep asking for help until you get things right. Keep us posted, please.

[robysue]

Ok, night 3 was bad.

Night 3 was one of the worst of my whole life. And night 4 was full of dread induced by worrying so much about night 3. But if you keep with it AND work at it, it should get better in time. But patience is needed because a few unlucky folks (like me) wind up feeling so much worse for several weeks or months before we start climbing out of the hole.

I couldn't even leave it on for the entire night. At 3am, after 4 hours, I just yanked it off. Sigh. AHI registered 0. I felt i was suffocating. I didn't feel i was breathing with the mask. I might go into the DME and have look at the data. And just lie down there for 30 minutes. It's frustrating.

Lying down at the DME for 30 minutes or so with the machine on is a decent idea: You can tell them exactly when/what is bugging you. And who knows, you might get lucky and have somebody at the DME actually give you a working solution.

It's also well worth finding a link by Uncle_Bob and downloading the ResScan software so that you can look at your full data anytime you want to instead of making a special trip to the DME and begging them to download everything instead of just the compliance stuff or just the summary stuff.

Could i use it w/o using the humidifier? I had the hud. temp around 10*F higher than the home temp as the DME had left it.

Yes, you can use the machine without a humidifier. But you may need to use a SlimLine or standard hose instead of the ClimateLine you currently are using.

If you do go into the DME with machine in tow to lie down for 30 minutes with the machine, you can talk to them about just how uncomfortable you are finding the extra warm, wet air to breathe.

Humidifiers (and heated air) are funny things: We all react very differently to them. Some people need lots of humidity and lots of warmth. Others want humidity, but no warmth. Others need drier air. And some folks prefer colder air. So it's going to take some work on your part to find your sweet spot as far as that temp setting on the ClimateLine hose is concerned. And you might do better without a heated hose.

What temps have you tried so far? You say you've been using 10*F over room temp, but you didn't tell us what room temp is. Since that's feeling overly oppressive, reducing the temp should help. But switching to an unheated hose might be the real answer. and running the humidifier at a low setting or in passover mode or not using it at all are all ways to try to get away from feeling like you are suffocating because you're sleeping in a jungle.

My lips are so dried even though i used it only for 4 hours.

Been there, done that, and have the lip balms and threads here to prove it. Chapped and dried lips have been one of the banes of xPAP for me. Things to consider: First, can you tell how/why the lips are getting dried out in the first place? The three main causes are: mouth breathing, mask leaks around the bottom of the nasal mask, and the exhaust flow from the mask bouncing off something like the bed covers or pillows back towards you. What they all have in common is that there is a lot of air flow right on top of your lips. And the tendency some of us have for lip licking in the day time just aggravates the problem.

Obviously if the problem is mouth breathing or mask leaks, the real solution is to fix the underlying problem and the chapped/dry lips should heal on their own. But if the problem is due to the exhaust flow from the mask, it's harder to fix. Rerouting the hose is about all you can do unless you're willing to be a lab rat and rig up some kind of exhaust flow diffuser. In my case, the culprit was (and remains) the exhaust flow of the FX combined with occasional mask leaks---leaks that start to occur as my nasal pillows start to wear out or leaks that are often associated with me wearing the mask way too loose because of a migraine.

While you are trying to pinpoint where the air is coming from, you do need to protect those lips and protect them well. For the most part that means keeping yourself well hydrated and using a lot of lip balm of one sort or another. And unfortunately most lip balms contain petroleum jelly as a major (sometimes only) ingredient. And that's not always good for the mask. I got so frustrated with chapped lips at one point that a PA in my PCP's office called aa local compounding pharmacy and asked them to concoct a special, custom made petroleum-free lip balm for me to try. After the first tube, I was sold on the stuff and bought six more tubes for $30. And they go a long way and last better at night than anything else I tried. I still use the special stuff at night regardless of whether my lips feel chapped or not. During the day? I'll use whatever chapstick/lip balm is handy---I buy a lot more of this stuff than I used to and I'm not overly picky about brands except that I don't like flavored stuff since it encourages me to lick the lips.

For several months I actually slept with a stick of lip balm of one sort or another in my hand every night all night long. And whenever I woke up (which was frequently) I'd slather more balm on the lips. With a nasal pillows mask this was easy to do without disturbing the seal of my mask.

And if you need more ideas about taking care of those lips, peruse this thread: chapped lips and chapped nares

i just don't know how I could go to work in this shape. I can barely walk around the house and function.

Been there and done this too. It's very very hard for some of us to admit to family and colleagues that we need some help dealing with a difficult, but essentially invisible medical problem. And sleep disordered breathing (covers both UARS and OSA) is a tough, often invisible, medical condition to deal with: The gold standard of treatment is xPAP therapy and xPAP therapy requires some real work on our parts to make it work for us. And for some of us, add in the bizarre "I feel 100 times worse on xPAP than I did before" for several months, and you're living with a mess. Something that was suggested to me during my darkest, least functional days last fall: Take some official time off from work for a week or so to focus on getting over the hump. If that's a possibility for you, I'd strongly urge you to give it serious consideration before tossing the idea aside as "impractical".

Me? I couldn't just take some off at the beginning of my therapy because I'm a college professor and I started therapy about 4 weeks into a 13 week semester; we don't have personal leave days or vacation days and sick leave is really designed for either intermittent "I've got the flu and need to stay home today" type problems or "I'm going to be out for the rest of the semseter" type problems. So taking a week or two off to focus full time on making CPAP tolerable was just not an option for me. But I do know that "Making BiPAP work" and "Starting the War on Insomnia" occupied the bulk of my month long Winter Break, with most of the work actually being devoted to the War on Insomnia. But that time over Winter Break focusing on BiPAP and Insomnia did get me over several important humps as far as xPAP was concerned. The wild ride I've been on since the end of January has been fueled by really lousy reactions to a variety of migraine meds, the need to learn how to deal with my seasonal allergies in a way that helps me deal with the biPAP, and continuing insomnia problems where the insomnia is no longer feeding significantly on the BiPAP stuff any more.

[Fitness Seeker]

Thanks, everyone. This forum is great. Now, on my machine the DME set it up so it ramps and takes 20 min (?) to go from 4 to my setting (10 -13 cm). I find the ramping not to my liking. Is there any benefit to having it gradual? Sometimes i just turn on the machine for 30 min til it gets to the higher pressure b/c attaching the hose.

They need to design the straps to these masks to be able to adjust in height. The lower strap is around my neck (is this too low). it's just super uncomfty.

Since i "slacked" last nite, i decided to use this during the day as i watch tv or on the computer. The only thing is it's kind of cumbersome (plus i dont' want any accidents w/ this precious unit--i'm paying close to $1k for it!) to tug it around. I wear glasses and found i can't use them while on this machine so i'm using my hubby's disposable contacts . Not my exact prescription but at least i could do a few things while using this machine.....yes, i think the strap being around the neck and unable to pull my hair out the way (med-long length hair) is really uncomfty.

They put my on nasal pillows when i did the titration but i found the concentration making me itchy. The DME also mentioned for apap users pillows aren't ideal. Can anyone comment on this?

Thanks, everyone. Y'all are awesome. Hugs and kisses.

[Pugsy]

They put my on nasal pillows when i did the titration but i found the concentration making me itchy. The DME also mentioned for apap users pillows aren't ideal. Can anyone comment on this?

Sometimes I think some of these DMEs get their answers from the magic eight ball.

I use APAP. Minimum 10 cm with maximum 20 cm. I fairly often will see pressures of 18 cm. I sleep right through them. Never know they occur until I look at a report. I have used nothing but nasal pillow type of mask since I started therapy May 2009. I consistently have near zero leaks and AHI most often less than 1. Using APAP is no reason to not use the nasal pillows. Now if you can't get used to all the air going up the nose..different story but you would likely have same problem with straight cpap. Some people just don't like it.

BTW I never use the ramp. Don't need to. Never did. You don't have to use it either if you don't want to. It is there for those that need a slow adjustment to the pressure.