New. Need help with my CPAP

Hello, I have been lurking for several weeks and I have finally decided to get my nerve up and ask a few questions. I know some will be redundant, but they are important to me.
First my story. I am a large female who on my way to a lapband had to have a sleep study. I knew what it would find, because I have been told that I have periods of apnea and a snore that would drive most people insane. Plus I would fall asleep at a drop of the hat.

About a month and a half ago I did do my sleep study and it did show that I had many episodes of apnea plus my O2Sat went down to 61%. I was sent home promptly on the Flexi Fit HC406 nasal mask on 8 of cpap and O2. I told the supplier that I was a mouth breather but I was sent home to see how it went. Well it didn't go well. I hated having to keep my mouth shut. My mouth would be sore from clenching my teeth together and I was told that I was sounding like a fog horn because I would inevitably open my mouth. Plus, I would unconsciously remove my cpap in the middle of the night. I never got a full night sleep. I got frustrated and I called my supplier and my cpap was increased to 10, because they said sometimes if the pressure wasn't high enough, a person would remove the mask. That also didn't work. I called them again and told them my problem, plus the bar at the top of my forehead hurt my...well forehead. So they put me on the Mirage Swift LT for her pillow. That also didn't work. My nares bled (yes I used the humidifier), plus I could NEVER get a good seal. So, I went back to the nasal mask and was told to wait until I had my repeat sleep study. After many nights of continuing to pull the mask off or sometimes simply not using it, I had my sleep study Monday night. The RT heard my story and put me on an Ultra Mirage full face mask small. I loved it. I finally was able to open my mouth. It had small leaks, especially when I turned, but not bad at all. I was increased to 12 on my cpap and my o2 was stopped. The supplier sent me home on the Mirage Quattra full face medium. He could never get me set up where I didn't have leaks on this mask. I told him it was a different series of the mask that I was on, plus a different size. I went home with the straps cinched so tight I thought my eyes would pop out. Last night I was one huge leak. I was miserable. I went back to him today and he swapped to the Ultra but a size Medium. He said that there wasn't much difference between the two. I have not used it tonight, but I am afraid that it is going to leak. The bottom of the mask does not stop at the area below my bottom lip and above my chin as the other did. It is a little lower, and it did leak at times in the office, but not anything like the quattro. If I didn't know that I had a small the first time, I would not think anything about the size.
After all that, if this doesn't work tonight, do you think I should get a chin strap and use the nasal mask? That is the one I seem to go back to. Am I being a problem child? I think my problem is that I should have had a choice of the different products, not just given a product and told to go home like a good child. I should have been fitted with several and then made a choice. I am so sorry for being long winded, but I am interested in your response and any help. Also, is 12 a high/medium/low setting? Just to throw it out there, I was told that during my sleep study I aroused 67 times during a 7 1/2 hours sleep period. Also, one of my most important question...what to expect from a full face mask? How much of a leak is acceptable. Will it get better? I am tired of being tired!

first of all....welcome. you have landed in a good place with people who will do their best to help you. you are at the beginning...and that is the hard part in my opinion. it is a lot to adjust to, don't you think? and all when your mind is fuzzy and you're probably not feeling well...being tired. so! as much as you can...try to be calm. find the humor when you can....and educate yourself thru this forum and any other way you can. knowledge is power! it is expected that you would pull the mask off and having trouble adjusting to this new contraption on your face! don't over tighten the mask...whichever one you end up with. tightening is not good! you will have to consult the experts about questions with pressure...as i have only been at this for just over 2 months. but whatever you do, chichi...don't give up. stay with it! and best of luck!

The chin straps are not vises and if you must have your mouth open they will not prevent it.
They work for those of us that have minor mouth opening issues and we only need a slight reminder to keep our mouths shut.

If you did well with the Ultra Mirage Full Small why did the guy send you home with a Quattro? Why give you a medium UMFF when you report doing well with a Small UMFF? Might as well try the UMFF medium since that is what you have available. It is better than nothing. Sometimes these suppliers are just blankety blank idiots.... But that is for another thread and rant.

Pugsy wrote:The chin straps are not vises and if you must have your mouth open they will not prevent it.
They work for those of us that have minor mouth opening issues and we only need a slight reminder to keep our mouths shut.

If you did well with the Ultra Mirage Full Small why did the guy send you home with a Quattro? Why give you a medium UMFF when you report doing well with a Small UMFF? Might as well try the UMFF medium since that is what you have available. It is better than nothing. Sometimes these suppliers are just blankety blank idiots.... But that is for another thread and rant.

I don't know why he gave me a medium instead of a small. I pointed that out, but he said that I was a medium. Maybe it will work. I just hate to be a burden and keep changing masks. Also, I know it will never be perfect, but I guess I don't know what acceptable is.

Don't get me wrong, the guy really is nice.

Welcome aboard! Lots of great folks and info here.

I've lost 53# so far since starting CPAP, I hope you're as successful! Many of us gained wt as our apnea got worse (when I complained to my doc at that time he said I was eating too much [same as I always had and no change in physical activity], then he said I had normal sugar diabetes...say what?) <dummy>. I stopped going to him.

jasminechichi wrote:...RT heard my story and put me on an Ultra Mirage full face mask small. I loved it...

Go back to the DME and demand this mask; if they won't provide it to you, go to your doc and complain telling him/her exactly what you told us about this mask. The biggest challenge to compliance to CPAP after acceptance that CPAP is critical to continued survival is how well the mask fits..if the mask hurts, there's something WRONG!!! Sounds to me like you found your ideal mask...demand it and don't take "no" for an answer. Get your doc to write an Rx for that mask in that size & give that to the DME...end of story, the DME has to provide it. Remember, our keywords here are patience and persistance!

jasminechichi wrote:...I just hate to be a burden...the guy really is nice...

Hey, get over it, don't be doormat, get what you need to make CPAP work for you...THIS IS YOUR LIFE, YOUR CONTINUED SURVIVAL we're talking about. Forget him, care about yourself; if you die, he'll continue to live, to get his salary, & carry out his DME's corporate policy of selling customers the wrong mask.

If you can afford it, just get the mask yourself (ask if your insce. co. will accept it that way - it'll be cheaper anyhow than what the DME would bill them for it).

jasminechichi wrote: I don't know why he gave me a medium instead of a small. I pointed that out, but he said that I was a medium. Maybe it will work. I just hate to be a burden and keep changing masks. Also, I know it will never be perfect, but I guess I don't know what acceptable is.

Don't get me wrong, the guy really is nice.

Might as well use it and at least try to get some therapy. If you don't like it, if you don't feel it is in any way better than the small then take it back and tell him that apparently you aren't a medium. Hmmm did he actually measure you? Anyway, it is your body and your therapy and it is his job to give you the tools to do the best you can. You are the best judge of how the mask suits you. It all comes down to that fact.

If he is really a nice guy he will understand.....

My DME insisted that Ultra Mirage and Quattro were interchangeable, too, but if you review the postings here from people who've used both, I think you'll find no one who actually uses them thinks they're the same. I have used both and found the Quattro MUCH more likely to leak.

Likewise medium vs. small Ultra Mirage; if you had a good experience with a small, why settle for a medium? Often, the DME will send you home with something they think is "close enough" because they don't have the exact one you need in stock, and they'd rather see you go home with something rather than than nothing. It's their job to make sure you have what works for you, though, so don't hesitate to push them a little. That doesn't make you a bad person or a problem patient, it just makes you someone who's determined to make their CPAP work.

I agree with Muse that getting a mask that works well for you is possibly the #1 challenge for CPAP, so don't be hesitant in your pursuit of what you need. It will make a big difference for you.

Catnap

I agree with everyone who told you to go back and get the mask that works. You're the customer; you made the job easy by specifying exactly what you wanted; and the supplier did not comply. Don't settle.

The Ultra Mirage Full Face and Quattro, like many other masks, create a seal by inflating the the soft silicone seal that runs around the edge of the mask. This seal needs some space to expand; cranking down the straps with the xPAP off is guaranteed to make leaks. With those masks, with the xPAP off, the top strap should not be under any tension (stretch) at all, and the bottom strap should be just a bit tighter. Then turn on the air, and if necessary tighten the bottom strap a bit.

Also, washing your face just before bed can help you get a better seal.

Welcome Jasmine. If you keep reading here, you'll see that your problems are very similar to what we've all experienced in one way or another. Just remember that the DME is a business but you are the customer. It's good that you found out so quickly that it is the Small UMFF that works best for you and there can be a big difference between that and Medium. BTW, my husband is successful with the UM but could not stop the leaks with the Quattro. They are not the same. It seems that many of us have had to do battle with the DME but I've found that when I stood my ground with good reasons and without getting too nasty, they became more willing to do their job to satisfy their customer. And not all of them have competent RTs on staff. As for the pressure you require to prevent apneas, I'm not qualified enough to really answer that but I do know that some people can be diagnosed with severe OSA and need less pressure to keep their airways open than others with mild/moderate apnea who need a higher pressure. Something about the body "architecture". Hope that didn't confuse you but if so, someone will jump in and make it clearer. Good luck, Dori