Amother New CPAP User & Struggling

[frontsis]

Hello All!!
I am another Newbie here so bear with me!! I have so many questions and concerns about my new machine and I have noone close to me to talk to regarding these issues, I was hoping to come and ask my peers. I welcome any comments you can give me.

I am a 46 y.o. male who was just recently diagnosed with sleep apnea. I received my new machine and gear 4 weeks ago. To this day, I am still struggling with sleep issues. I have been prescribed Lunesta to help me sleep just until I am used to the new machine although I still cannot sleep with the nasal pillows at night. I am getting maybe 3 hours of sleep a night. I am REALLY struggling with this and not sure what to do or what I am doing wrong. I have discussed this with my Doctor and they have recently "turned down" the pressure from 15 to 10 hoping that would help but it has not. I am getting very frustrated which may be the problem using the machine at night. I have set the ramping for the max (45 min.) and don't feel the nasal pillows are painful in any way just...shall we say uncomfortable. I feel like I'm suffocating and then I panic. Then I remove the mask after just a short time and shut off the machine with a feeling of failure and go to sleep without it, which then makes me feel guilty because I know I need it! Then I am exhausted the next day.

A little vague, I know, but I hope you understand. Has anyone gone through the same process & how did you overcome it. Are there any suggestions you could make to possibly help me. I want this machine to help me feel better but right now I feel it's hurting me more than helping me.

Thank you all for being here!!!

Frontsis

[Babette]

IMHO you need to try a different mask. Keep trying different masks until you can find one that lets you sleep all night.

Discuss this with your Doc and DME and ask them what they can do for you. I believe that all masks are returnable to the manufacturer within 30 days, so they should be able to swap you masks at no charge to you.

If not, there are other options. There are often masks for sale or trade on this forum, and on http://www.cpapauction.com

And there are some Test Drives available, which let you try a mask before running out and buying one:

HYBRID – by pjwalman
viewtopic/t33434/Hybrid-TestDrive-Continues.html

SMALL LIBERTY – by fortomorrow
viewtopic/t35474/ResMed-Mirage-Liberty-Test-Drive.html

LARGE LIBERTY – by echo
viewtopic/t35486/Large-Liberty-test-drive.html

NASAL AIRE II – by Babette
viewtopic/t30639/The-Return-of-the-Grea ... Drive.html


If you search for "Mask+Roulette" you'll find a thread of people offering to swap masks. Go directly to the end and read backwards, as it's a very long thread and most of the early masks are gone now.

Good luck!!!
Babs

[Marietjie]

Hi there, friend - I,m not so sure if the doctor did the right thing to turn the pressure from 15 to 10? It's a big difference. What does our other friends say ? ? ? Also, don't set the humidifier too high - try 1 and a half or 1 - depends on the temperature in the room. Ag. I sincerely hope you get it right. I continuously had leaks at the sides of my nasal pillows but fixed it with "prestic" (Eventually one tries everything to get cpap to work ! ! !) Good luck - and good night - Marietjie

[CpapedTexan]

Hi Frontsis,

I'm new to using a Cpap too, and had the same problem as you with the feeling of suffocation while using the pillow mask; I had to switch to a different one. In my case, I needed a full face mask, because I'm also a mouth breather. It's helped a lot and I can sleep and breath easier. Maybe as someone suggested above, you can try switching masks.

Michelle

[ractar28]

Are you claustrophic? I'm EXTREMELY lucky because I'm not.

My nares (nostril holes) get aggravated by nasal pillows, so I like a nasal mask. I've also tried the full face masks, but will reserve that one for only when my sinuses are misbehaving.

One of the biggest problems with nasal pillows or a nasal mask is "mouth breathing". Over time, you can train your mouth (or yourself) to not breathe through the mouth. I hold my mouth a "certain way" and it relieves any mouth leaks, but it took me a while to do that. They make "chin straps" and frankly, I needed something better like a ton of tape or something. Even with the chin strap, I could relax my jaws and start spurting air. Like I said, I had to break myself of that.

Here's a few things I've picked up here. If you have leakage around the mask, go to Walgreens and get some Mack's silicon ear plugs (they're globs of soft silicon that you can mold into a long string and run it around the part of the mask that is supposed to seal against your face. It works like caulk and helps tremendously. Some folks here use blue "painters tape" to tape their mouths shut to keep from mouth breathing.

Now for a bedtime routine. Put your mask on, but don't connect it to the cpap machine. Lay in bed, breathe normally. When your respiration slows down (as it does when your body is at rest), connect the machine. I don't use "ramp" because I want air NOW, so I just turn it on.

Now let's talk about "convenience" features. A HEATED humidifier is on top of that list. Use the lowest setting that works for you. If you find that you're having issues "fighting" the machine trying to exhale, they have "features" for that too. Respironics has "c-flex" and "a-flex" which will reduce the pressure during exhale so you can "breathe easier". I believe other brands have that type of feature under their own special trademarked name.

Since you have insurance (and hopefully 100% coverage), dork around with masks until you get what you need. For a nasal mask, the Respironics Ultra Mirage 2 is good. I'm also getting a Resmed Comfortgel nasal mask to try and see if I like it better. The UM2 is nice, but I have leak issues (resolved with mack's earplugs). When it comes to masks, I believe SMALLER is better. I consider myself to have a large nose, but a large nasal mask is too big for me. Get the smallest one that covers the width of your nose without causing pinching pressure. Your DME should be able to help you with that.

Also, perhaps try sleeping in a different room (or ask your partner to), so that you can get used to the mask and machine without feelings of guilt for keeping your partner awake or moving around too much or making too much noise, etc.

I wish you the best in your journey for good sleep.

[Georgio]

I was titrated at 8 vs. your (assumed) 15, but I started with the same machine as you. I got rid of it and got an auto machine which is much more comfortable to breathe with. Good luck.....keep it up....you can get there.

[Julie]

Hi, have you tried NOT using the ramp, or only setting it for a very short lead-in? I think most of us don't use it at all, certainly not after the initial few tries, as it does give such a little bit of air at the lower end, we can't breathe either. Unless your pressure is set really high, you may find you do better without it once you get over the immediate rush of air. Also, any question you might be a mouth breather (once asleep) and have no one to tell you about it? Many of us have found we are in that category (even though it came as a surprise, or often seems to start once we're on Cpap (the pressure again), but if it applies to you, all the nasal air in the world won't help if it's going out your mouth, so you may want to investigate a full face mask such as an Ultramirage or Hybrid. Makes a huge difference to treatment!

[Guest]

Hello All!!
I am another Newbie here so bear with me!! I have so many questions and concerns about my new machine and I have noone close to me to talk to regarding these issues, I was hoping to come and ask my peers. I welcome any comments you can give me.

I feel like I'm suffocating and then I panic. Then I remove the mask after just a short time and shut off the machine with a feeling of failure and go to sleep without it,
Frontsis

Hi, have you tried NOT using the ramp, or only setting it for a very short lead-in? I think most of us don't use it at all, certainly not after the initial few tries, as it does give such a little bit of air at the lower end, we can't breathe either. Unless your pressure is set really high,!

If either your starting or ramp pressure is below 7cm you may feel like you are starving for air. Find out what you are set to start at.

For leaks you want to adjust your mask at a higher pressure. Set your starting pressure higher (adj mask) then if you can't sleep right away set the Ramp at a lower pressure but not below the pressure which you starve for air.

Good Luck

[frontsis]

Thank You so much for all of your replies!! I have tried a few different settings this weekend and changing some some things did help somewhat. I have been noticing that my sinuses have been acting up somewhat (no sinus issues before using machine) since using the machine and by reading some of your posts I went out and bought some Nasonex Nasal Spray which I was told by my Doctor to use very night before going to bed. Has helped some but still have that "tingling" feeling the next day. I understand from the posts that this may be normal using the nasal pillows. Also, my Partner tells me I do NOT breathe through my mouth at night when using the machine, which is a good thing. So I don't feel I need a full mask. I changed my nasal pillow the other night from medium to large and that helped somewhat, although the outside (around my nose openings and in between) have become very sore. Been applying lotion to see if that will take away the soreness. So far nothing. Also, one more question, for everyone, if I may...I get a lot of moisture in my hose and around the nasal pillows and am concerned I may breathe this in. I have turned the humidifier down to 2. Any suggestions??
You all have become a BIG help to me just from your suggestions and realizing I am NOT the only one out there that have issues with CPAP.
Thank you for everything!!!

[Julie]

Turn your humidifier down to 1 or even go without it and see if your 'sinus' issues go away, and of course your rainout problems will stop too.

[Engransan]

I had exactly the same problems you are experiencing and gave up for a year until my sleep Dr found out. To overcome my panic I reflected back to my days as a scuba diver and imagined that the situations were similar which worked. Once I overcame the panic I was on my way with the help of all these fine folks. I agree with Julie that using the ramp makes the situation worse since you are not getting enough air initually. I also turned my humidifier off. My Resmed autoset also has exhust pressure relief which helps very much to relieve that pressurized feeling. If you share your sleep data with this group they will help you solve the problem. Hang in there it does get easier.
Engransan

[bearcatx16]

Greetings frontsis:

Like you I was unable to sleep with cpap even to the point I could not be titrated. My sleep Doc. got me a machine set the pressure on 7 and anytime you sit down in the house put this on and use it, except to eat...so whenever I sat down to read, watch tv or relax I stuck the mask on and hit start. The first time I dozed off it was 10-15 minutes eventually I was able to nap up to an hr. and I could wear it for as long as I was reading etc. This was all done in the comfort of my lazy boy. Five months later I was titrated and been on 11 cmh2o since. Not saying I haven't had my ups and downs, but I'm using it and refuse to lay down without it. Now if there are kids in the family be prepared for some expressions, don't know about animals/pets don't have any, but my granddaughter even starting napping with me and cpap.

Don't give up and like previously stated the mask is the secret. I thought the ResMed Activa was the best now I'm using the LT Swift after thinking the Swift II was horrible.

Blessings

Fred

[Guest]

although the outside (around my nose openings and in between) have become very sore. Been applying lotion to see if that will take away the soreness.

Try some Lansinoh (pure lanolin) found where they sell supplies for nursing mothers. Just a very lite dab on the pillows each nite not only stop soreness but help so much to seal, reducing your leaks.

WARNING: Do NOT use petroleum products on your cpap face or nose seals.

[rested gal]

Like you I was unable to sleep with cpap even to the point I could not be titrated. My sleep Doc. got me a machine set the pressure on 7 and anytime you sit down in the house put this on and use it, except to eat...so whenever I sat down to read, watch tv or relax I stuck the mask on and hit start. The first time I dozed off it was 10-15 minutes eventually I was able to nap up to an hr. and I could wear it for as long as I was reading etc. This was all done in the comfort of my lazy boy. Five months later I was titrated and been on 11 cmh2o since.

Sounds like a very smart doctor. Good way to go about getting acclimated to "CPAP" if a person is having a problem like that. Good advice, bearcat!

Hope everything smooths out soon for you, frontsis. You've come to the right place to learn more and more about how to make it work. Can take time to iron out all the wrinkles, but small steps will help you get there. Good luck!

[JZ]

Also, one more question, for everyone, if I may...I get a lot of moisture in my hose and around the nasal pillows and am concerned I may breathe this in. I have turned the humidifier down to 2. Any suggestions??

Moisture condenses in the hose and mask because of the temperature difference between the warmer, humidified air coming from your cpap and the cooler air in your bedroom. It is called "rainout" and is very unpleasant if those drops of moisture are inhaled into your nose. Here are the most effective ways to combat it:

1) Purchase or make a insulating cover for your hose.
2) Purchase a heated hose cover (http://www.sleepzone.com.au/)
3) Make sure your hose is elevated above your machine either by lowering your machine below the level of your mattress or elevating your hose (viewtopic.php?t=10640)
4) Reduce your humidifier to 1 or turn it off if you can tolerate that.

Welcome and good luck. You are having some very difficult but common problems. If you hang in there any try different things, you will get past the problems and adjust to cpap therapy.

Janna