Newbie Can't Get Out Of The Gate/Mask Problems

[bdonahueweedman]

Hi Everybody;
After a whirlwind diagnosis, a flurry of distress messages and a LOT of generous input on this board, I come to you once again in need. The bottom line is I cannot keep my mask on my face. ANY mask. My dear friend BleepingBeauty, who has really taken me under her wing, suggested I write a bit about it and try and get some feedback. I started with the Quatro full Face mask. I never did make it a full night, but when I first started with the S9 unit, it stayed on my face for 3-4 hours a night. As my machine was tweaked more and more, the time I was able to keep it on my face grew shorter. The "Blowfish effect" had me unable to keep the mask on as the pressure was blowing out my cheeks, ears just everything. I just wake up totally unable to breathe and panic and tear the thing off of my face. I also wake up DRENCHED in sweat in spite of having the A/C on low low low. Even tho I am a mouth breather, my Resp Therapist suggested backtracking a bit and trying a nasal mask with a chinstrap, JUST to see if I could tolerate ANYTHING on my face overnight. I didn't even make it an hour last night. When I first go to sleep I am always a bit stuffy (any kind of drops, saline, anything up my nose makes it worse). I tried it last night *without* the chinstrap, just to see if i could make it thru the night keeping anything on my face and was unable to. My buddy Beauty has been strongly suggesting the Hybrid. My Resp Therapist said they have NO patients that use one or have any luck with them, so she doesn't have one I can try. She is perfectly willing to let me TRY anything I want that they have (I don't have Insurance so she is trying to help me get the right one before I purchase). As I said tho, the nasal mask I was unable to tolerate as well. I asked her point blank half-joking if she'd ever had anyone have as much trouble as me and she said "one guy" which may or may not have been to make me feel better. She is going out of town until Tuesday, so I'm left with 2 masks that I can't use. I guess my question is, has anyone else had a REALLY hard time getting going with this BiPap therapy? What were your solutions? If you start throwing figures and numbers at me, my eyes are going to glaze over; I have only had this dx for a little over a month, and my results have been so poor that we can't get a decent printout for me to even submit to you guys to look at. I can guarantee you I have never slept worse since I started all of this. I'm frustrated and angry and starting to lose hope and faith; are there some people who just can't do this? What are your suggestions, and what do you think of Beauty's suggestion of the Hybrid? As unrealistic as this sounds/is, I've almost GOT to know the Hybrid is the answer becasuse I really can only afford to buy one mask.
Okay guys...have at it. Any and all suggestions, replies welcome! Beth

[Wulfman]

It would greatly help if you gave us some more information......like what your pressures are, your humidifier setting.....and in general "WHY" you don't seem to be able to keep it on your face. Is it too warm, to much pressure, too much humidity.......what? If your machine settings are "out-of-sync" with your breathing, that could affect it, too.

Need more info, please.


Den

[bdonahueweedman]

I can tell you my settings, but as I said I am brand new and don't understand them yet. I thought I explained pretty well why I can't keep it on; when I get the "blowfish" effect, when a huge burst of air comes in, I feel like I'm suffocating. I hit the 'ramp' button, but when I am asleep I just pull it off of my face. My prescription says the following: "Phillips Resperonics BiPap Auto SV with Encore Pro Smart Card. Minimum Ipap: 16/ Maximum Ipap: 25/ Epap: 13/ Back-up rate: Auto. " When this thing forces the air into me I panic (in my sleep). I often 'snooze' during the day just to get SOME therapy, because if I'm awake I can control it, not pull it off. Again the numbers are Greek to me, I have results which I sent to Bleeping beauty who said they werent really complete; they are having a hard time getting a printout because I don't have much continuous useage. Thanks

[Wulfman]

Have you taken this up with your doctor and DME? Maybe they can lower the pressures to help you get started. It doesn't do much good to have (relatively) high pressures if you can't tolerate them (and have to keep hitting the Ramp button).
ANY lower pressures would be more than what you were getting before therapy.


Den

[Noluck]

As you can probably figure out I have had little luck in learning to sleep connected to a machine. Actually it will be a year this September that I started. I too seem not to tolerate any type of mask on my face. I have also lost faith at times in trying to make this work though since finding this site have been encouraged to keep trying. Recently I found a nasal mask called Sleepweaver. It is a cloth mask and inflates like a balloon. There are no silicone, gel pads, plastic, etc. parts creating pressure points on your face. It seals fairly well and I can even sleep on my stomach. If you purchase directly from the company you have 30 days to return for a full refund. It is by far my best chance of making this whole bipap thing work. Still have issues with the whole "therapy" thing though I think I may be getting closer to making it work. Check out Sleepweaver site and see what you think. They even have a video that is very informative. Let me know how you make out.
Good luck...

[megawill]

The hybrid may be a good mask for you...but rather than buying through your RT / DME, I'd suggest checking out the cpapauction website. You can usually find new one there for somewhere around 50 dollars. Many do have very good luck with the hybrid mask, so I wouldn't trust your RTs opinion on that one.

http://www.cpapauction.com

[Janknitz]

You mentioned that you have a FF mask and a nasal mask, but can you tell us the brand and model? That might help as well.

Your max inspiratory pressure (IPAP) is pretty high at 25, and that's probably why you feel that "blowfish" effect. I agree with Wulfman that you should call your doctor and ask to be started at a lower pressure until you get more comfortable with the setup. Even if the treatment isn't fully effective, it will be better than not using the treatment at all. Once you get used to the machine and mask, the settings can be increased to an effective pressure for you.

With the RT gone, you may have to schlep your machine in to your doctor to get the adjustments made. I would advise against changing anything yourself right now, you are in such panic mode that you don't understand the numbers, so you shouldn't go around changing them. But I would call the doctor today and try to get in to see him/her ASAP.

The other issue is that you have to get used to having something on your face. That's not easy and you may need to take baby steps during the day when you are fully in control. Plan a quiet activity--reading a book, watching t.v., listening to music, or playing on the computer. Wear the mask and see how long you can manage to keep it on. Keep notes on what might be bothering you (too tight, too loose, uncomfortable with the air blowing, panic attacks, etc.). When you try again, see if there's anything you can fix that will make you more comfortable and try to wear the mask just 10 minutes longer. Gradually increase the time.

Try this--sometimes it helps. Take a dry washcloth and vigorously rub your face where the mask touches for a few minutes before putting the mask on. This may help desensitize your skin to the mask.

The important thing is not to give up--keep taking these baby steps--you CAN do it.

When you feel panicky, try some deep breathing exercises, while telling yourself that everything is OK, you are getting air and you are in control. T

[Wulfman]

You mentioned that you have a FF mask and a nasal mask, but can you tell us the brand and model? That might help as well.

She just posted in another thread that she has the Quattro........which have seals that may be too flimsy to withstand those pressures. The Ultra Mirage Full Face has better (firmer) seals to handle higher pressures.


Den

[bdonahueweedman]

Thanks everybody for your input. Can't get my settings changed til next week, so will just have to tough it out over the weekend. The thing is, it doesnt bother me to have something on my face when I'm awake. I'm not scared of the machine or anything. Its so weird. Its like another person takes over when I fall asleep. I saw somewhere on here some guy uses a Sleepweaver mask? (sleepweaver.com) and I checked it out...wow. Looks like a big sting ray attached to your face. Therre's a LOT of stuff out there, yes? I found this thread to be very helpful: viewtopic.php?f=1&t=53932&st=0&sk=t&sd= ... strophobia just people saying Hang In There you WILL get used to it! Keep suggestions coming, I'll anser questions if I can...Thanks !Beth

[BleepingBeauty]

With Beth's permission, I'm posting the data printout she sent to me (from her earlier ASV trial). Each page is in two parts:

Night One:




Night Two:




Night Three:




The fourth night only lasted for about an hour, so there's nothing useful to post from that one.

[bdonahueweedman]

Thanks Robin...youre too good to me!

[jweeks]

Hi,

Sorry, but I have more questions than answers. My biggest question is why you ended up with an SV machine? My BiPAP is very predictable, espeically the Resmed machine that I bought in March. I don't get sudden bursts of air. I wonder if this SV feature is what you are having a hard time adapting to?

I run at 20/13. In looking at your plots, you are not spending very much time above 20. So we are in the same ballpark for pressure levels. I tried a number of torture devices (masks) before I found the Swift LT. Many folks say that the swift cannot be used at high pressures, but it works for me, and several others on the board are using it successfully. I did use a hybrid for a while after giving up on the Quatro. It worked very good, but in the end, I couldn't get any of the full face or hybrids to seal without leaving big marks on my face.

The interesting thing about the Swift LT is that I have absolutely no sensation of pressure when using it. I cannot even tell that the machine is on when wearing the mask. One side effect is that it keeps my sinuses pretty clear. I used to wake up plugged up every morning, but since starting with the Swift LT, I am free and clear all day long. The only gotcha with the Swift is that you cannot ever open your mouth when wearing it. If you do, you get an effect like being in a tornado, and, at least for me, it feels like it sucks the wind out of my lungs. At first, I could keep my mouth closed, but after I got more relaxed, even a chin strap didn't help. I currently do mouth taping. It isn't optimal, but it works for me.

Please don't feel like there is anything wrong with yourself. Running CPAP at a high pressure is a tough nut to crack. Once you get things figured out and dialed in, it can get as smooth as glass. But it can be a struggle to get there. I lasted less than 2 hours the first night, and I was ready to give up more than once. Thankfully, the folks here were able to talk me down off the ledge.

-john-

[Uh, LoQ]

I would agree that you need to back your pressures way down and get used to your machine at a lower level first. Then start raising them.

If you can't get your doctor to change the pressure settings for you, someone can tell you how to change them.

Your pressures are really high. I'm not at all suprised that you are having trouble getting used to this. At the pressures of your Rx I think you are going to find any kind of pillow mask to be an unhappy solution.

If you do decide to try a pillow mask, make sure you try it for a little while on your Rx prescription so you can get the "full effect."

There was a thing going on in this forum where you could get on a list to try out the hybrid mask. People would receive it in the mail, try it out for a while, then ship it on to the next person on the list. You may try to find that list and see if you can do that if you really want to try it. I really don't think it's your best bet, but since people are recommending it, I'm trying to give you an inexpensive way to see whether or not it is something you might like.

[SleepingUgly]

Are you conscious of taking the mask off, or doing it in your sleep? If the latter, you can try taping it to your face in some spots so that the sensation of the tape pulling wakes you.

Are the times correct on your printouts? Are you sleeping on your usual schedule?

Your doctor needs to be on board with this, but I agree with other posters, that it may be better to start at lower pressures and slowly work up to higher pressures. But again, you'd want your doctor to OK this.

[BleepingBeauty]

Thanks Robin...youre too good to me!

No problem, girl! We'll get you there, by hook or by crook.

FWIW, I don't think the SleepWeaver (or "stingray," as you described it ) or any nasal mask are good choices for you. You're a mouth-breather and, unless you're willing to tape your mouth closed every night, a nasal mask is a bad choice. (I don't think anyone with claustrophobia would be able to tape their mouth shut with any level of comfort, but we *are* all different. If you think you can handle it, try it.) Chinstraps aren't reliable enough, IMO (and I should know).

Hi,

Sorry, but I have more questions than answers. My biggest question is why you ended up with an SV machine? My BiPAP is very predictable, espeically the Resmed machine that I bought in March. I don't get sudden bursts of air. I wonder if this SV feature is what you are having a hard time adapting to?

I don't think Beth will mind me chiming in on her behalf here. (She's a newbie to all of this, and we've been communicating about her journey quite a bit.) She was prescribed an ASV machine because she's dealing with central apnea. These machines can (and will) raise the pressure by 3cms per breath for three breaths in a row, so the pressure can rise a full 9cms in a very short time period; that's producing the "wind-tunnel" Beth is experiencing, making her feel like she's suffocating, inducing the panic (which is probably responsible for the sweating), and prompting her to rip the mask off her face. Although the machine is designed to work this way for people with Beth's diagnosis, at her high pressure settings, it's understandably very difficult for her to deal with, especially right out of the gate.

I get where you're coming from, john, in comparing your BiPAP to Beth's, but they're different animals.

There was a thing going on in this forum where you could get on a list to try out the hybrid mask. People would receive it in the mail, try it out for a while, then ship it on to the next person on the list. You may try to find that list and see if you can do that if you really want to try it. I really don't think it's your best bet, but since people are recommending it, I'm trying to give you an inexpensive way to see whether or not it is something you might like.

Really? I know Babette was doing that "Test Drive" thing with the Nasal Aire (cannula) mask, but I didn't know there was one for the Hybrid, as well. Coolness.

To the forum:

I've been advising Beth (as some of you also have here) to lower the pressure range so she can wear a mask for more than a few hours without having to hit the Ramp button over and over again or waking up in a sheer panic and ripping the mask off. I sent her the manual and am very willing to help her change the settings herself. But she's relying on her RT and sleep doc right now (who, by the way, have been very generous with her, IMO) and understandably doesn't want to alienate them, so she's going to wait until the RT returns next week to request a lower pressure range.

I have no answer to the RT's (very) questionable reasoning in giving Beth a ComfortGel Original (nasal mask) to try now, when she knows Beth is a mouth-breather.

I've been suggesting the Hybrid to her because it works so well for me, with the same machine. Granted, my pressures aren't as high as Beth's, but I find that the Hybrid holds its seal very well, even when the pressure jumps, and I find it very comfortable. Check out the low leak rate (and flat line), even when the pressure rises quickly:



Needless to say, I *love* my machine AND my mask. And eventually, Beth will, too!