CPAP is set too high, I need help (newbie)

[ramirezi]

Hi there, typical newbie here. After 6 long months of waiting to get a CPAP machine, I got one yesterday. It's automatic and set at 8-18 but there's a problem. When I lay down to go to sleep and click start, the pressure of 8 is too much to handle awake. I wore my Swift LT for Her for 30 minutes before I couldn't take the feeling anymore. It felt like my head was going to explode, along with my nostrils. I had to finally get up and take a 800mg of Ibuprofen to attempt to get rid of the migraine it gave me.

My question is, can I somehow move the setting down so I can at least relax without my head feeling like it's being filled with helium? It's auto and I don't know if I have to have some technician do it but I cannot handle this high pressure. Can anyone offer some insight on how to fix this? I filled out as much info as I could in my profile with the equipment I was given. I'm not sure what software is being used. I just have this small card that says ResScan Data Card.

I don't want to completely give up on CPAP before I start but that's a feeling I cannot get used to. I saw some post saying panic attacks follow. I believe it. If I stayed on it any longer, I'm pretty sure I would have had a panic attack... or passed out, whichever would come first.

Help?

Oh and also, does anyone have any solution for the air blowing out the mask? It's cold! I sleep on my side with my arm on the pillow in front of me and it's like having a air conditioner blowing right on them. Brrrrrr

[bdp522]

You'll find instructions in this link;
http://www.cpap-supply.com/Articles.asp?ID=130

As for the cold air, try the Headrest mask. It blows the air straight up instead of out, may be more comfortable for you.

Brenda

[ramirezi]

Oh my gosh, it's like it's like hacking the system. I feel wrong doing that. Does everyone do this? Won't it show up on the report? Wouldn't doing that disqualify for insurance? Just wondering if changing the setting to about 4-18 instead of 8-18 will get me in trouble.

[LoneStar]

ramirezi,

Welcome to the forum.

First off, you need to get over the feeling of "getting in trouble" like you're some little kid for taking charge of your xPAP therapy and changing things if you need to in order to make it work for you. Your doctor is not the one experiencing your therapy, and neither is your DME or insurance company. Learn all you can and take charge.

Now, no one here will advocate changing settings willy-nilly. You need to take time and read a lot here and learn how and most importantly WHY you would change settings. Start by reading "Our Wisdom" and "Where a CPAP Newbie Should Start."

Learn about the features of your machine and how to use them.

For example, when I started therapy I, too, felt like I was being blown away and felt that I couldn't breathe out against the pressure. So I changed my settings. As I and my body got used to things (and by looking daily at the data from my machine), I was able to slowly change the settings to get optimal results. I also learned to manage mask leaks and found ways to make all the equipment comfortable and work for me.

When my doctor asked how I was doing with my xPAP, I told her about changing my settings and why. I also had printouts from my machine showing the data to support WHY I had made the changes and the improved results because of making them. She was impressed. And I am 100% compliant.

If I had left my settings at their original point, I have no doubt that my xPAP machine would be sitting in the corner of my closet covered in dust.

BTW, the machine data card without the software (that you buy and install on your computer) is pretty much useless; all it tells is compliance which is how many hours you use the machine. To fully understand and get the most out of your therapy, you need to buy the software and card reader and learn to use them.

Lisa

[SleepyInIndy]

Your machine has a ramp feature. Are you using this?

The ramp feature allows you to start at a lower pressure and have the pressure gradually rise to the full minimum over time. In theory this allows you to relax and fall asleep before the full pressure starts. This is a client comfort feature and you can control both the starting pressure and duration (how long it takes to get to your starting pressure). Many people will use this feature for a few days and then find out that they no longer need it once they adjust to the air. Personally, my pressure is 9 and I no longer use the ramp and, in fact, frequently am not aware of the pressure when I awake during the night or in the AM.

A pressure of 8 is not very great, but going from none to 8 is a bit of a blast for some. Try the ramp before you go into the machine and change your auto settings.

Keep plugging.

John

[ramirezi]

I will read up on that and have already changed the setting to 4, but might go lower, if it can. I've been a lurker for years around here so I'll get some catching up on more recent topics. Hopefully the advice of everyone helps.

I don't care what my doctor thinks, by the way they treat their patients, I'm only worried about the compliance report saying something like I did something wrong. (My post in this thread explains why I don't care about the doctor viewtopic.php?f=1&t=42935&start=15)

I just need a compliance report to pay for the therapy. I have zero income so I have to make due with what they gave me.

I'm on a autoset so I put the settling to 30 minutes.

edit: Aha! I see why the software wasn't given to me now. They won't sell any software to patients anymore.

[jdm2857]

I'm glad you found the Settling setting as the ramp feature is not available in AutoSet mode.

Settling will keep the the pressure at the minimum pressure setting for the time that you specify.

Also, some people report they feel like they are not getting enough air at a setting of 4. If this happens you may want to bump the minimum up to 5 or so.

And 4 is the minimum pressure value that can be used.

[ramirezi]

I'm so frustrated ya'll. I changed the minimum setting to 4 (will bump it up per jdm's suggestion), so it doesn't feel like my head is going to blow up or float up to the sky but now it feels like I'm manually being strangled. My body automatically keeps making me gasp for air and it feels like it's fighting to get out of this strangulation mode. Like a body naturally would.

What should I do? I have had the machine for two nights and haven't even got an hour on the machine. I'm ready to return it and deal with the OSA like I've lived with most my life. It's actually quite scary to me. When I did the sleep studies, I wore a disposable full mask and I hooked one of those up to the machine and it wasn't as intense as the pillows. Is it possibly the nasal pillows that are doing this and I need a full face mask or something?

I sleep on my side and I'm a super light sleeper and it's difficult to fall asleep without the auto CPAP already. My untreated RLS (since it's not covered) also adds to it. I need help. I just want to cry I'm so frustrated. How can I make this mask work? It's the Resmed LT for Her and I've read it's the most comfortable but I swear it feels like a hand being held on the side of my face while I'm being suffocated through the nose.

Oh why. This is soooo frustrating.

[Muse-Inc]

I'm so frustrated ya'll.

My first night was that way, in fact, the first 4 nights were pretty horrid in terms of sleeping.

I have an OptLife mask, click on the link below and you can see it; it's the lightest and least obtrusive mask out there except for the nose cannula sorta thingee called Nasal Aire II (if I remember correctly). I'm a side sleeper and the OptiLife is perfect for me because the air exhausts slightly downward; if I position my arm downwards into the airstream, I pull an edge of sheet/blanket over it.

I'm on CPAP with pressure of 11. I had my ramp pressure of 4 upped to 8 after a few weeks because I felt I was struggling to breathe with it at 4 (at first it felt very strong); I set my ramp time to 5 minutes because I'm usually asleep before it goes to full pressure. My first 4 nights, I woke up every single time it went to full pressure -- miserable experience as I slept in 45 mins naps (max ramp time) all night long; then, the 5th night, I slept 9 uninterrupted hours.

It takes some patience to adapt to sleeping with gear on, air being blown up your nose, remembering everything you need to do, and let's not forget being relaxed yeah, like that's gonna happen in the beginning.

[rested gal]

I just need a compliance report to pay for the therapy. I have zero income so I have to make due with what they gave me.

This is my understanding, but I may be wrong -- "compliance" -- in terms of what insurance or Medicare want to see in order to pay for the therapy machine, is simply using the machine at least 4 hours within a 24 hour period, at least 5 times a week.

When checking for "compliance", nothing is looked at other than the "hours of use." The machine being used at least 4 hours a night (or day), at least 5 times a week.

As far as I know, compliance for insurance purposes has nothing to do with whether the pressure(s) are still set as originally prescribed, haven't been changed, etc. Compliance has to do only with meeting a required minimum amount of time that the machine is actually being used.

That minimum "compliance" requirement doesn't have to be four consecutive hours, I don't think. Can be in bits and pieces -- 45 minutes here, hour and a half there, and so on -- as long as it adds up to at least four hours within a 24 hour period beginning at noon one day and ending at noon the next day. Doesn't have to be time spent asleep with the machine either. Could be time being chalked up while wide awake, as in watching TV or reading a book while using the machine.

[KSMike]

First, know that many of the people here have dealt with similar frustration - you're not alone! Try not to panic about how it's going. Adopt an attitude that you'll overcome the problems, by taking your time and addressing one problem at a time. You can do this! You just have to figure out how to do it on your terms.

If you feel you had better luck with a FF mask in your study, then you might be better off using one all the time - I do (for different reasons), and many others here do, too. A FF mask might lessen the perceived intensity of the pressure, and it lessens or eliminates the feeling that you must keep your mouth closed no matter what.

Just remember that this tends to be more of a marathon than a sprint, and even when things begin to improve you'll still have "setback nights" now and then. Every day, think about what you did differently the previous night; think about what seems to work, and what doesn't. It's a process of refinement and troubleshooting.

Hang in there!

[ramirezi]

Thanks for your help. I'm thinking I have the wrong mask even more once I filled out the sizing guide. It said:
Given your measurements, the Mirage Swift LT for Her Nasal Pillow CPAP Mask with Headgear is not the ideal mask for you.

Ah ha! Now I just have to narrow down the search for what will fit properly. I don't know if the mask I used during the sleep study is a full mask or not. It covered the nose only and had that huge platform on the forehead. It does sound like I need a full mask though because I usually breathe out of my mouth and have always had problems breathing only out of my nose, even during the day.

Another question about the compliance. Say I haven't even used a hour (yet) and I've owned it for 2 days so far. Is that a no no? I can't keep the mask on, it's suffocating me so the longest I wore it was 30 minutes at a time before I gave up and had to get some Ibuprofen. I can't use the CPAP at all with this mask until I get another, I think. I'll keep trying to deal with it until I can get in to see them again. They told me if I need to get a different mask to do it right away because insurance won't help if its been too long. I was half asleep when I went to the appointment because I'm a day sleeper and of course businesses are only open during the day so I was so overwhelmed, baffled and confused. She had to keep telling me "It's okay, it's going to be okay."

First thing I'll check is on the mask in your sig and see if it's on the list of what cpap.com recommends.

[preemiern]

I would call your DME right away on Monday morning and see about getting a different mask. I personally feel that nasal pillows are definitely not a good choice for a new person just starting on CPAP because the air coming through the pillows does seem harsher as it blowing directly up your nose. A full face mask will seem gentler, as the air is somewhat dispersed rather than blowing directly in your nose. Ask the dme to let you try different masks and if possible hook you up to a machine while you are there to try the various full face masks at your starting pressure of 8. also, I wouldn't do a whole lot of pressure changing until you get a mask that works for you first. then you can start watching your data, and see what if any changes might give you optimal therapy. Stick around here, and we'll do what we can to help you make this therapy work for you!! Good luck!! Cindy

[ramirezi]

I'm on top of things. I sent them a e-mail asking if they are open on the weekend and explaining the situation. If I don't hear from them by Monday around 9am, I'll give them a call. I did some more research and I figured out the disposable mask that was used during the study and I'll try that out tonight. I don't know what setting to put it on so I said it was standard.

It's a Respironics Comfort Gel Nasal CPAP Mask with headgear. Although as soon as I open my mouth I feel like I stuck my head out a window, it's more liveable than the nasal pillows.

After doing some searching I've narrowed down the future mask to the Resmed Mirage Quattro Full, which is the one that sounds the best. Then there's the Respironics Comfort Full 2 Face Mask with Headgear. Any opinions on which is better?

I will ask them about the software and getting data but I don't think I'll have any luck with that. I have no money so I cannot afford to pay out of pocket anything. It's hard to even get the money to get to this place. So I will have to be their hamster and make due with whatever they give me. Since it's online, I read the prescription that said it was to provide a couple mask at a time and all cleaning supplies and this and that but I got the bare minimum with a humidifier and directions on what to use to clean.

So I'll probably always be clueless as to what kind of treatment I'm having, what it's doing, if it's helping or all those other number thingies I have no idea what they mean.

A person can breathe through their mouth if they have a full mask right?

[BlackSpinner]

A person can breathe through their mouth if they have a full mask right?

Correct That is why I didn't even bother with the nose masks. I am often totally congested though the cpap therapy has helped dramatically for that too. I love my mask! I love my CPAP!