New cpap user needs massive help...PLEASE!

[njkmommy]

I have been using a CPAP machine by Respironics with a full mask (I am a mouth breather) for almost a month now. I am more tired than before! I seem to be having problems with the mask leaking and moving around. I keep losing my breath and gasping for air all through the night. There is a humidifier attached to the machine, I have it on the setting of 5 every nite, and I wake up with the worst dry mouth ever. The mask hurts my nose...I used to sleep about 4-5 hours a nite and now I am sleeping less! After my sleep study I was told that I have"severe" sleep apnea, due to my many illness' (I had Stage IV Hodgkins Disease, Cardiomyopathy, and a very bad back, with 2 spinal fusions done already, and I am only 39) One of the reasons I always woke up early after little sleep was because of my back. I thought once I began the therapy for Sleep Apnea, I would sleep much longer. I really need help, I have a 5 year old that I chase after all day, and I need some energy! All I want to do is sleep and my daughter said the other day "Mama, all you want to do is sleep..your no fun", this is breaking my heart, anyone with some advice, please help guide me to what I need to do. Thanks so much!

[Pugsy]

Can you please either add your equipment data to your user account profile here or tell us exactly which Respironics machine you are using and which mask you are using. Is the 5 cm setting the ramp setting or what your therapy is supposed to be at?

Obviously something is not working but it takes some detective work to figure out just what it is and how to address it.

[harry33]

welcome,
if your mask has straps they need tightening to reduce airleaks

you may also need a chinstrap to stop jaw 'opening wide' in sleep and breaking airseal

if water level in humidifier doesnt go down, its not working

there are many advantages in being a nose breather, do you mouthbreathe for a reason or just from habit?

[Wulfman]

I have been using a CPAP machine by Respironics with a full mask (I am a mouth breather) for almost a month now. I am more tired than before! I seem to be having problems with the mask leaking and moving around. I keep losing my breath and gasping for air all through the night. There is a humidifier attached to the machine, I have it on the setting of 5 every nite, and I wake up with the worst dry mouth ever. The mask hurts my nose...I used to sleep about 4-5 hours a nite and now I am sleeping less! After my sleep study I was told that I have"severe" sleep apnea, due to my many illness' (I had Stage IV Hodgkins Disease, Cardiomyopathy, and a very bad back, with 2 spinal fusions done already, and I am only 39) One of the reasons I always woke up early after little sleep was because of my back. I thought once I began the therapy for Sleep Apnea, I would sleep much longer. I really need help, I have a 5 year old that I chase after all day, and I need some energy! All I want to do is sleep and my daughter said the other day "Mama, all you want to do is sleep..your no fun", this is breaking my heart, anyone with some advice, please help guide me to what I need to do. Thanks so much!

This may sound counter-intuitive, but I think you need to turn your humidifier WAY DOWN or OFF. If you also have nasal stuffiness, you need to do some nasal rinsing/cleansing before going to bed. Too much humidity will/can actually close off your nasal passages and cause worse mouth-breathing.

As has been said, listing your exact equipment would help a great deal. Your mask may not be the right size or it may actually be too tight. There are some masks that just don't work for very many people......but they make the DMEs more money, so they get handed out.

I also agree with the probability that your Ramp pressure is too low or too long and causing the suffocating feeling.


Den

[Babette]

In my experience, I felt WAY WORSE the first few weeks of therapy, before I felt any relief. The first two months were HELL for me. I had to go on Provigil just to stay awake enough to keep my job. You need to give yourself some time, and defnitely keep close with your doctor to troubleshoot any problems.

That said, I also went through 8 masks in 6 weeks, attempting to find the best fit. I finally did with a chinstrap and the Nasal Aire II. Every person is very individual, and finding the best mask fit for you is going to take time and money. I got two masks from my DME - all the rest I either bought used here on the forum, or traded with another forum member for.

There are several mask test drives going on, where you can try a mask before you buy it. I run one for the Nasal Aire II. You can read more about them in the links below in my signature block.

Good luck, and keep posting!!!!
Barbara

[JoyD.]

Hi njkmommy,

In the beginning we all felt like you . . . really. Se we understand. It's important to take things step by step. We can help you address each of your frustrations one by one. I know it's difficult to do, but try not to feel overwhelmed. You're going to be fine!

As Pugsy already suggested . . . we need more information on your specific equipment, etc. Go to the top left & click on "Control Panel", then the Profile tab, then "Edit Equipment" in the list. Use the pull down boxes to choose your equipment. Then you can add additional comments . . . where you might want to write the Pressure your machine is set at now. Thanks. We can help you much better with that info in front of us.

Welcome to the forum We will look for your equipment & pressure info. Then ask your questions, one or two at a time. We want to help.

Joy

[njkmommy]

Hi to all that responded...I followed Joy's advice and added all my equipment to my profile now..I hope I did it all right! I also went to my equipment place today and they fitted me with a nasal only mask with a chin strap to keep my mouth closed while sleeping. I am a mouth breather, but since I am feeling so anxious with the full mask on, we figured why not try it. The next step if this does not work is to have the Dr lower the pressure. I am very high pressure since I have severe sleep apnea. I believe it is something like 18 over 14....does that make sense? I hope to sleep better tonite, thats all I have to say! I have always been a mouth breather, since I was a small child..so this may be difficult for me. The one ray of hope I have is that during my sleep study, I only had a nasal mask on..so lets see what happens! I appreciate all your help and advice!!

[ww]

Hi to all that responded...I followed Joy's advice and added all my equipment to my profile now..I hope I did it all right! I also went to my equipment place today and they fitted me with a nasal only mask with a chin strap to keep my mouth closed while sleeping. I am a mouth breather, but since I am feeling so anxious with the full mask on, we figured why not try it. The next step if this does not work is to have the Dr lower the pressure. I am very high pressure since I have severe sleep apnea. I believe it is something like 18 over 14....does that make sense? I hope to sleep better tonite, thats all I have to say! I have always been a mouth breather, since I was a small child..so this may be difficult for me. The one ray of hope I have is that during my sleep study, I only had a nasal mask on..so lets see what happens! I appreciate all your help and advice!!

It would be unusual if that is the equipment they gave you is an auto bipap as most clinics would try very hard not to issue this expensive a machine. It would also help to list it in text rather than pictures. I have that same humidifier and run it on 0 when the outside humidity is high and 1 when it is low. Any higher numbers cause a lot of congestion.

I also started out with that mask. It is very heavy and was very hard to sleep on my side without causing a lot of leaks. I was fortunate to get properly fitted with a Ultra Mirage Full Face Mask in a Small size, although the DME tried to get me into a Medium that let air leak into my eyes. The UMFF mask was the last thing I wanted, but I look back and realize that I wasted over a month trying to use nasal masks when the full face mask is lighter and fits much better and I can sleep in any position. All the problems with dry mouth went away.

[JoyD.]

NJK,

It is great hearing that you have a BiPAP machine -- you need it with your pressure! Now the KEY is getting the right mask FOR YOU. This can take months as many here know! Everyone is unique, but there are specific masks that are the most popular for gals & guys at your pressure. Hopefully, others at your pressure can respond and make some suggestions for you to try.

Is there ANYONE out there on the Forum who uses a BiPAP and has a PRESSURE similar to njk's at 18/14, who has been ABLE to use a Nasal Mask?? If so, how do you make it work?? -- If not, what FFM's are the most popular - especially for gals?

The "veterans" on the Forum know better than I, and I hope they weigh in. IMO, you probably DO need a FFM (full face mask). But you need to TRY on a LOT of masks in DIFFERENT SIZES. Many times the DME just is not helpful about fitting you, so you need to try a LOT of them on -- preferably lying down -- connected to a CPAP at high pressure! And I would definitely try on the forum "favorites" in all sizes SO YOU KNOW that is the SIZE for you -- afterall, YOU ARE THE ONE WEARING IT.

Once you've received feedback re masks at your pressure, then you can find a DME who carries those masks and compare to see which one FITS YOU BEST, trying it on as described above. If your DME doesn't carry those masks, or won't let you try them on in different sizes (not just the size "they say" will fit) . . . then go somewhere that will. You are NOT tied into only one DME. Just get a copy of the prescription for "masks and supplies" from any one of your doctors, and go somewhere where they will spend time with you and let you try on the best FFM's in different sizes. [NOTE: KEEP THIS ORIGINAL PRESCRIPTION; have the next DME make a copy . . . tell them you will go somewhere else who will accept a copy if they argue about taking the original]

Best wishes as you wait to hear from FFM users with a similar pressure as yours. Let us know how you are doing with your Nasal Mask and keeping your mouth closed. (I'd also suggest doing a search -top left- on TAPING, HIGH PRESSURES, FULL FACE MASKS)

We're here for you!
Joy

[JoyD.]

Bump for new cpap user.

[spitintheocean]

I run my APAP machine at slightly higher pressures with a full face mask. I was a mouth breather my entire life but I have been able to train myself to breathe through my nose when I sleep because at these pressures it is very easy to satisfy my requirements by breathing through my nose. During the day, I continue to mouth breathe, probably from nearly thirty-five years of heavy smoking.

If you want some free and cheap advice, try wearing your mask and running your machine while watching television. You need to beat the common sense of claustrophobia many new users encounter when they first try to accommodate this alien environment. As you become familiar with the rythmn of breathing through your nose while wearing the mask sitting up and awake, you will have a much easier time of overcoming any panicky thoughts while lying down and attempting to sleep.