need advice (no insurance)

Hello, I am new to the OSA world. I knew I had it for quite a while, but had to save $$$ for sleep clinic. After the wonderful night stay in my "wired hotel" I was told I had severe apnea (67 events per hour). I did research on this board for several days. I decided to purchase a Remstar pro 2 w/cflex and was lucky enough to find a used machine on craigslist. I have tried it for seven days and have yet to sleep for more than 2 1/2 hours. I have tried two different masks to no avail. I have ordered the resmed full mask and hopefully that will help. My RX is 14 (but I felt terrible in the morning because of unbearable gas) so I after reading some of the posts I set it at 13 until I get used to it. (Maybe part of the problem??) Don't want to go back to sleep clinic because of the cost.

I am a mouth breather and have a slight problem with this mask on my face. I have to talk myself into being calm when I put it on. During the middle of the night I feel like I am drowning (????) and rip the mask off. Now it is 1:00 a.m. and I don't want to go to sleep. I take that back, I really want to sleep, but CAN'T. Can't sleep with the mask, can't sleep without the machine, just can't sleep. (sorry, pity party for one!)

I am determined to live a longer and healthier life and if I have to get used to this #!@#%% machine I will!!! Because I set my machine at 13, I am looking to buy software and the card reader. Am I already on the "most inexpensive" site to purchase? Does anyone not use their software or card reader and want to sell?

Sorry for the long post. I thought that once I got my machine that everything would be perfect. After reading so many of these posts, I realize I am not alone in having difficulties. I thank all of you . . . . you give me hope!

The infineer card reader here is the cheapest;

http://www.two-factor.com/shop/

You'll still need the software, but you will save alot on the reader.

Brenda

Tkuentz, you say that you feel like you are drowning. Do you have a humidifier? if so, turn it down. My hubby uses the #2 setting, next to lowest and he has no "rainout" problems.

He is into this for a little over a week, so we are new too. He has severe OSA, CA and some Cheyne-Stokes as well. Things HAVE been better with the machine, but it takes getting used to.

Best wishes to you.
Lee

Hello Tkuentz,

Don't go back to the sleep lab unless you have no other option. There are plenty of things you can do to manage these issue yourself.

First, you should know that your early experiences and frustrations are 100% normal. That is why this forum exists!!! Almost everyone has problems with compliance at first, and almost all of these problems involving coming to terms with the many weird sensations and adjustment headaches that accompany xPAP therapy.

DON'T GIVE UP!!!! The more you learn and the more you experiment, the easier this will get, the more comfortable you will be, and the more SLEEP you will get.

It is ABSOLUTELY NORMAL to have trouble at first.

Let's get to specifics:

1) I think you are correct to consider your RX as a guideline, but if it were me, I would start with a number as high or higher than you had in your sleep study. Being a cash player, you were probably highly motivated to make the sleep study work, but a lot of people find it difficult to completely relax at the "wired hotel" (I love that!) As a result people sometimes need to bump UP their prescription at home. In my case, I was also highly motivated and I have had good (long term) success at my Rx pressure, but that is just me.

2) There isn't a whole lot you can do about aerophagia (swallowing air, which ends up being released "one way or the other". My advice is to stop worrying and try to get used to it. Any adjustment that your body can make to reduce this will be completely unconscious (and therefor out of your control). Remember when you were a kid and you discovered that soda-pop made you burp. Did that keep you from drinking carbonated beverages all your life? Probably not. This is only an issue for you because you haven't accepted it as normal. It is. (Again, my personal experience is that I feel the need to burp for a few seconds about 60% of the time when I wake up. I could be off because I have learned to ignore it.)

3) I note that you started out with the same mask I started with (Res-Med Ultra Mirage II). This is a good mask, but ultimately I found I couldn't use it every day. It is just as important to get the right size cushion as it is to get the right mask. What size are you using and how did you figure out that was the right one? Also, you mention that you have mouth-breathing issues, but you don't talk about mask leaks or strap adjustment problems. If you don't have problems with leaks or sore spots, consider yourself lucky (and highly atypical). Please give us more information. I think you will find that getting the right interface is >80% of the battle. (The other 20% is keeping a positive, but active, attitude about your treatment).

4) About mouth breathing and using a full face mask. DON'T DO IT UNLESS YOU HAVE NO OTHER CHOICE. Breathing through your nose is an acuired skill. For me, it felt really weird because I am unable to get enough air through my nasal passages without a CPAP. So I ALWAYS breathed through my mouth when I slept. When starting with CPAP I had to literally clench my teeth and bite my tongue at first to keep breathing through my nose. Sometimes it take a VERY long time to retrain your body to do things like this automatic. But if you can, it REALLY helps to make xPAP therapy more livable. Nasal masks and other nose only interfaces are much more comfortable, much less confining, and frankly much more varied and customizable than full face masks. Even if your FF is your primary mask, keep trying to make a nasal interface work. If the UMII doesn't work so great try something else. If you sleep on your side only, try a Breeze. If you sleep on you back try a Swift. If you like you UMII, but it leaks, try the Activa or one of the Respironics Gel masks. I would DEFINITELY see wether a nasal mask or pillow system will work for you with a chin strap or tape before I would resign myself to FF masks. Your FF mask may work for you, but I don't think ANYBODY would use one if they could control their mouth breathing some other way.

4) As you might have gathered I DON'T use a FF mask, but I do think the comment you got regarding humidity control is important. Having the humidity too high or too low are both problematic. However, there are other reasons that you might be getting a choking or drowning feeling. One of the biggest is that you might be waking up with a leak big enough to have lowered your pressure. Or your pressure might be too low to begin with. I don't have a card reader, but if I were in your situation, I think I might look for one. It will tell you a lot about your compliance during the 2 1/2 hours you do get.

5) Finally, I want to remind you that you had severe OSA and that it went untreated for MUCH longer than it should have. You are not likely to feel the benefit of CPAP all at once. It will take work, and it will take time. For me, it was so gradual that I really didn't feel the change from one day to the next. But gradually my level of NORMAL FUNCTIONING changed from being barely able to cope with life to actually having a life. Remember that it is a VERY tired and frustrated person who is trying to figure out all this hosehead stuff. You will have success, but you have to be patient with yourself. Most of all, you have to keep trying.

Let me know if there is more that I can do.

I am very proud of you for the steps you have taken so far. I think that it would have been very hard to stick with this if I didn't have insurance and a supportive medical team.

You need to eliminate mouth breathing because cpap does not work at all when you mouth breath even if it is running. Before you try to do things with your machine you need to either use a nasal mask with your mouth sealed or use a full face mask. There are several ways to eliminate mouth breathing such as taping mouth or using a snorban plus wide chin strap plus others.

GeneS

GeneS wrote:You need to eliminate mouth breathing because cpap does not work at all when you mouth breath even if it is running. Before you try to do things with your machine you need to either use a nasal mask with your mouth sealed or use a full face mask. There are several ways to eliminate mouth breathing such as taping mouth or using a snorban plus wide chin strap plus others.

GeneS

... and also, some folks are able to train themselves not to mouth breathe (just search for "mouth breathing train").

Hi Tkuentz,

Tkuentz wrote:I have ordered the resmed full mask and hopefully that will help.

Give it a shot, but also keep the nasal mask as an option. Many folks here have successfully transitioned to a nasal mask and believe that it is the better option.

Tkuentz wrote:My RX is 14 (but I felt terrible in the morning because of unbearable gas) so I after reading some of the posts I set it at 13 until I get used to it. (Maybe part of the problem??)

Yep, aerophagia can be really awful. Folks have reported that changing their level of C-flex or turning C-flex OFF has helped. For me, a pressure or 13 cms would be unbearable if I had to endure it all night. I use an APAP which ranges between 5 cm and 15 cm. My apnea occurs predominantly during REM so I have low pressure most of the night. As a result, aerophagia isn't usually much of a problem for me.

I'd suggest that you get a copy of your sleep study and try to determine your own apnea pattern. (Or, maybe even ask your sleep doc.) If you have long periods without apnea, then an APAP can do wonders to reduce the aerophagia. APAP's are expensive, but when it makes the difference between tolerating therapy or being non-compliant, the price begins to look pretty cheap.

Tkuentz wrote:Don't want to go back to sleep clinic because of the cost.

The only reason I would go back is if I thought the sleep doc had something of value to offer me.

Tkuentz wrote: . . . I am looking to buy software and the card reader. Am I already on the "most inexpensive" site to purchase?

Like with most things in life, comparison shopping pays off. 2factors.com is the lowest cost place to buy the reader, but you may not want to wait the couple of weeks it takes to get it to your door. Personally, I haven't seen any cheaper prices for the software than here.

Regards,
Bill

Thank you all . . . I actually slept from 2:30 a.m. to 5:20. Took off the mask and went back to sleep until 6:30. Got up, showered took kids to school and didn't feel the need to go home and nap.

Drowning: The drowning feeling I was talking about was not actually the humidifier, but the feeling of too much air and the mask - I believe it's a mental thing!!!

Mask: I originally thought I would order the breeze mask because I am a side sleeper, but thought I would have to get a full mask because of the mouth breathing. Sounds like I should give it a try.

The swallowing air: I don't mind "letting the wind out of my sails" so much, but the pain in my abdomen and chest were overwhelming. If I could let it rip, I would feel better !!!

I can't thank everyone enough who posts . . so helpful. Without insurance, this has already cost us about $2000. and now I am on the "hunt for the mask". (Oh, and the nasal mask is ok, no leaks, but the full face mask leaks at the eyes). I believe when I find the right mask, I will post and whoever needs it most will receive all the "new" discarded masks.

I will look for the software and thanks for the card reader tip!

I will conquer the breathing beast!

Tkuentz, I sent you a PM. Just click on the upper right side of this page to read it.

And you might want to read this current thread regarding "air in stomach".

viewtopic/t18722/Trouble-with-air-in-stomachgas.html