new cpap user who needs lots of help

[tbas]

Help! I'm a new cpap user. After using the nasal pillows for a couple of days, I realized they weren't for me since I must breathe through my mouth. My therapist changed it for the Mirage Quattro. It feels fine for a couple of minutes, but then I feel claustrophobic and take it off. Can someone help me with advice on how to get used to it, since the therapist said my insurance won't let me keep changing masks. Also, is it safe to use. I have a fear of suffocating and dying. Am I crazy?

[sleeplessinaz]

Hi tbas---welcome to the best place to get advice to help your CPAP therapy. First off you need to sign in and post your machine type and your pressure and things before we can help you. If you have a pressure above 10--the nasal masks probably are not going to be for you. If you are below that and even if you are a mouth breather--there are chin straps and things that folks on here use to help that if you still want to use the nasal pillow masks. Post your equipmente etc.--then you will get lots of good ideas from everyone!!!

Carrie

[BleepingBeauty]

Help! I'm a new cpap user. After using the nasal pillows for a couple of days, I realized they weren't for me since I must breathe through my mouth. My therapist changed it for the Mirage Quattro. It feels fine for a couple of minutes, but then I feel claustrophobic and take it off. Can someone help me with advice on how to get used to it, since the therapist said my insurance won't let me keep changing masks. Also, is it safe to use. I have a fear of suffocating and dying. Am I crazy?

Hi, tbas, and welcome to the forum. Please register (top right of the page) and then go to the User Control Panel (top left of the page) and fill in your profile so that others here will know what equipment you're using and can better tailor their responses to specific questions. You can list anything else (like your pressure setting) in the Comments section.

Yes, of course this equipment is safe to use. Your fear of suffocating is a common one, but that fear is misplaced. We all should fear suffocating in our sleep when we're NOT using the machine. When we ARE using the machine, we should feel reassured that it will keep us FROM suffocating.

To get used to wearing the mask, put it on while you're wide awake, sitting quietly and relaxing (watching TV, reading, etc.). Pre-treatment, our brains are accustomed to be on alert all night, waking us from deeper sleep stages repeatedly to make sure we keep breathing. Now that you have your equipment, it's time to retrain your brain so it knows you'll keep breathing with the help of the machine. To that end, attitude goes a long way. Tell yourself as often as necessary that this machine and mask will keep you breathing steadily and, in time, will give you back your life. Positive reinforcement.

Hang in there, and start reading all you can on this site. There's a ton of invaluable info here.

[sleepycarol]

Are you using the ramp?

What is the pressure that it starts out at? If it is 4, which many are set that way, many find with a full face mask the pressure isn't high enough and you indeed feel like you can't or aren't getting enough air.

As far as changing mask -- that is bull. Your insurance has absolutely nothing to do with it. It is up to the DME as they can send the masks back to the manufacture and get their reimbursement that way. This means you have a lazy DME that doesn't want to work with you to find the correct mask. I have a pressure above 10 and am successful with a nasal pillow mask. I do admit though that I started out using a full face mask, the F&P 431 and used it several months before switching over.

The full face mask is made in such a way that you are not actually going to suffocate with it. It has a specially designed seal that once the pressure is cut off it opens and allows you to breathe in good air. Most of us wake up almost immediately if the power goes out so you probably would be too. Try it out. Put on the mask and breathe without the machine on. See you can do it. This should help relieve your mind.

Some find that one of the hybrid masks works for them. There is the Liberty and the Hybrid. It is a nasal pillow mask with a another portion that covers the mouth. Good selection for many, although I found I was not very successful with it.

Good luck and keep hanging in there. You will eventually get it and will look back and wonder how you ever got along without it.

[rheumrn]

I have been on therapy for 27 days now. My pressure is set for 7 to 19 with a ramp of 5 for 10 minutes. My 90% pressure is about 16.

The first week was very bad with headaches, nasal irritation, chills and extreme dry mouth (I am a mouth breather). I started with a Quattro full face mask but kept getting leaks. My Aussie heated hose, saline sinus rinses (neti pot) , nasal gel helped alot but my AHI stayed around 12 (sleep study was 60).

Because of pain/redness on the bridge of my nose and air flow into my eyes, I tried a Liberty (hybrid) mask with nasal pillows and a PAPcap Plus to hold my chin up. Without the PAPcap and a small piece of tape, I would still get leaks in the bottom of the Liberty because my jaw drops and opens my mouth wide.

Now that I have been using Liberty/PAPcap/tape, I feel more rested and have some energy. My AHI was 4.5 yesterday!

I have had undiagnosed OSA for probably 20 plus years so I feel fortunate to see improvement in the first 30 days.

[tbas]

Thanks to everyone who is trying to help me. You have no idea how much better this site makes me feel. (although I think you all do) I registered and put down all my equipment info like you said. Just to let you know my pressure is 8CM, with a ramp of 30 minutes.

[BleepingBeauty]

Thanks to everyone who is trying to help me. You have no idea how much better this site makes me feel. (although I think you all do) I registered and put down all my equipment info like you said. Just to let you know my pressure is 8CM, with a ramp of 30 minutes.

I would stop using the ramp feature, if I were you. A pressure of 8cm is on the low side, so utilizing the ramp probably makes you feel like there's hardly any air coming through at all.

If you're not comfortable using 8cms right off the bat, another option would be to raise the ramp starting pressure (which I'm betting is 4 or 5cms , which is way too low for many of us to be able to breathe comfortably) to 6 or 7 and/or lower the amount of time for ramping (to 5 or 10 minutes, from 30).

I'm guessing your DME set your machine up with its present settings. Once you're educated here, I think you'll find that you know a LOT more than they do about your equipment and your therapy needs. It's natural to think of these people as the "pro's" (who should know what they're doing and/or talking about), but many of us have come to realize that we have to take care of ourselves on this journey.

Again, welcome aboard. You struck gold when you found this forum and all of the experienced users who are here to help you along.

P.S. (And this is important) The machine you're using is NOT data-capable. In other words, you won't have any idea how well your therapy is working (AHI, leak rate, etc.) except to go by how you feel. That's NOT adequate if you're having any problems with the therapy (and we all have problems now and then). If your machine is relatively new, I would advise that you insist on exchanging it for a full data-reporting machine (like the Elite). Insurance pays the same amount for either machine, so they won't care which one you have; the DME will care (and will probably give you a hard time, because they make more profit on the machine you currently have). But the DME's profit margin is their concern, not yours, and you'll be FAR better off with a machine that reports full data.

[tbas]

Thanks Bleeping Beauty for your very knowledgable help. I am going to change the ramp time and try it. I wouldn't know how to change the pressure. I feel like such an idiot! My machine does come with a data card, which my therapist said I didn't need unless my doctor wanted it. Should I put it in on my own?

[BleepingBeauty]

Thanks Bleeping Beauty for your very knowledgable help. I am going to change the ramp time and try it. I wouldn't know how to change the pressure. I feel like such an idiot! My machine does come with a data card, which my therapist said I didn't need unless my doctor wanted it. Should I put it in on my own?

Heh. I'm no expert, but I've definitely gotten a good education since I found my way here last April. (And you're not an idiot; you're a newbie. We're all newbies in the beginning.)

I'm not familiar with how to adjust your machine (I have a Respironics), but you should be able to change the ramp settings (both the length of time and the starting pressure) easily enough. The User's Manual should have instructions for that; if not, someone else here can tell you how to adjust them.

With the machine you have, the data card will only report compliance (i.e., usage) information to your doctor and/or the insurance company, to prove that you're using the machine that the insurance is paying for. That information is absolutely useless to you and/or your doctor, from an efficacy standpoint. It won't provide you with any data about the therapy, itself, so neither you nor your doctor will know what to change if/when it feels like your therapy is not effective. You (and your doctor) are flying blind with the machine you have.

I had a similar machine in the beginning (the Respironics M Series Plus), and I struggled to get good therapy for 18 months. I had no idea that I was mouth-breathing with a nasal pillows mask (which means that my leak rate was very high, since the therapy air was escaping my mouth instead of filling my lungs, and I wasn't getting the benefits of using the machine). Lots of wasted time, when I could have been feeling much better much sooner.

I really don't want you to follow my early path, so I'll urge you to exchange that Escape now for a machine that produces efficacy data.

[Jersey Girl]

Dear tbas,

I think that I would be EXTREMELY uncomfortable if my ramp were turned on for 30 min. In the beginning it was set for 5 minutes and like you I am set for a pressure of 8, so, I have since turned OFF the ramp, and it really helps.

Also, especially in the beginning, I would get in bed, get really comfortable and put the tv on for a little while or read, just to get used to the mask. TV or a good book took my mind off of the claustrophic feeling and got me involved in something else while getting used to the mask.

My DME told me NOT to change the pressure, as this is prescribed by physician. The ramp, however, is up to me and I have decided there is no ramp needed. I can see, however, that perhaps if I had a really high pressure, the ramp might be more necessary and pleasant.

Regards,

Jersey Girl

[tbas]

Thanks to all who answered telling me to turn off the ramp. I tried it during the day today to test it, and it seemed much better. I'm going to try it tonight. Wish me luck!

[Muse-Inc]

...claustrophobic...fear of suffocating and dying. Am I crazy?

Nope, got the same issues. I was horrified when I hadda give up my beloved OptiLife pillow mask 'cause I was losing therapy air and hadda either tape (NO WAY) or get a FFM (yikes, I can't even look at 'em without shuddering). What to do? I now wear the RespCare Hybrid FFM, it covers my mouth and has pillows...yippee, problem solved! Plus, it's pretty comfortable.

Ditto what Bleeping Beauty said about swapping out the Escape, I had one, the original one (there's 3 versions) no data, ran into problems, backslide into full-blown symptoms again, took me 6 months to get it figured out thanks to finding this forum and learning reading and help from more experienced more knowledgeable users. Take the advice of us who started out with data-less machines & swap it out. If your machine blows 1 pressure, you need the Elite II. If your machine blows a range of pressures, you need the AutoSet II. If it were me, I'd start my therapy with the AutoSet II, an autotitrating CPAP. It operates in CPAP (1 pressure) or Auto modes (range of pressures based on preceding 5 breaths so you get the right pressure you need to stent open your airways when you need more or less pressure). Don't let he DME folks say they can't swap, they can and an APAP costs you (in co-pay) the same as a CPAP; if you have probs, come tell what they said and we'll help you get what you need.

[tbas]

Thanks, Muse-Inc. I am going to try to change the machine today? Do I need the doctor's permission? (I'm the type of person who is not forceful and can be pushed around) I'm now worried about how much all this will cost me in the long run. I got such a bad night's sleep last night, and I feel so lousy, that I've been crying on and off all morning. I'd like to try the hybrid mask that you have because with the quattro, I now have a big red mark on the bridge of my nose that hurts, and it makes me feel like I'm in a vice.

[Fred D]

(I'm the type of person who is not forceful and can be pushed around)

I want you to know that I and everyone here on this forum have your back and will be here for encouragement (with the emphasis on the middle part of that word "courage") and will not let you down. Soon you will think of the people here as family and friends. They are some of the most caring and intelligent people I have ever run across in this type of setting. Please keep this in mind as you are dealing with your problem and know you are not alone.

I wish I had some technical advice I could throw in but since I don't; all I have to offer is moral support.

Fred

[tbas]

Thank you Fred....the moral support & encouragement means everything to me!!!!!!!