Using Bi-pap machine since April 2017 still trying to find the right mask

[Mouth Breather]

Hi Everyone, I'm thrilled to have found this board!

I have severe sleep apnea - I stop breathing 80 times per hour - every 40 seconds.

I started using a bi-pap machine in April 2017. I am a long time mouth breather. The mask that I started with was a Phillips Respironics Amara View. I use their Dream Machine ST as well. I was told that it was the only one Phillips/Resp made that could deal with my high pressures. 30 in and 25 out. First three weeks went very well, I slept 8+ hours each night. I felt like a champ! Then the pain set in, the external tissue on the underside of my nose that separates the nostrils swelled and became very tender to even gently touch the nest day. I continued to use it for another week as I really need the machine to breathe. The fourth week my machine set off an audible loud beeping with red flashing lights across the screen saying - Low Pressures. I let my local representative know that my machine was waking me up 10/15 times a night and that I was not able to wear the mask any longer either. I have had nose surgery to correct a deviated spectrum. My nose won't tolerate much abuse. My representative responded quickly and the 'search' for a well fitting mask began. I have tried them all. For long periods of time as I am always hopeful that the next one will work well.

The latest mask she tried me on was a nasal mask that was very light. Although, I needed a chin strap to keep my mouth shut. I felt like a trussed up turkey. I woke often during the night in a panic attack, which I have never had before. Also my entire nose swelled and  was painful. I went back to my Amara View mask, although I am having the same issue with my nose. The masks are breaking down my surgery.

The 2nd issue that I and my representative have to deal with is that I have a permanent condition called Pressure Urticaria Dermographism. It literally translates to skin writing. The most fundamental of all causes is the application of friction or pressure to the skin and a wheal (hives) or welt (another name for hives) develops in the area of applied pressure or friction. I even get them where my head touches a down pillow.  

My representative has had Phillips/Resp overnight me two new additional machines. They both set off the alarms the first night I used them.  I have not tried the full face mask or nasal gel mask.

Any suggestions or thoughts on what I need to do? I thank you in advance!

Sorry for the long health issues background.

[Sleeprider]

Usually such high pressure has a root cause, and I'm wondering if you have seen an ENT specialist about the obstruction. Where does it come from? We have dealt with some members here that significantly lowered their pressure requirement using a positional therapy tool (soft cervical collar), and perhaps that might work for you. Just a thought you might look beyond pressure as a fix.

The Amara View is a form of hybrid mask that uses a nasal pillow with mouth cover to supply a pressure interface. You clearly don't tolerate that. Why not a full face mask?

Finally, the alarms can be turned off on the ST. Your pressure is 30/25, and I assume you don't use a backup rate (BPM). We have some members that use high pressure, but honestly, you are the winner in that regard. You should investigate physical issues that cause the obstruction, possible positional issues that cutoff your airway, and look at mask alternatives. Of all of those options, the soft cervical collar is the easiest to implement.

[Melman]

Not sure how you cope with your Pressure Urticaria Dermographism. Resmed has a new Airtouch F20 full face mask with a memory foam interface that may be worth a try. I use the Airfit F20 which is the same mask with a standard silicone cushion instead of memory foam. It's the best I've ever used.

[PaytonA]

I am not sure if the 2 masks that I use will handle 30 cm /H2O pressure but they do very well at around 20 for me. That would be the Resmed Mirage Quattro and the Resmed F20. There is one mask that I was told by a P-R engineer has handled 40 cm/H20 for those whose face it fits well and that is the FitLife whole face mask. This mask seals on the forehead above the eyes and down to the chin. It has no seal anywhere on the nose.

The one thing that I will tell you is that full face masks require some real work and time to get them adjusted to your face and vice versa. Merely putting them on once to see if they will work will generally not get them to seal well. Sleeprider's suggestion of the soft cervical collar is a good one to try. They seem to come in 2.5, 3.0, and 3.5 inch heights and variable lengths. They do not have to close up completely in the back and should not be worn tightly so they are more bearable.

Best Regards,

PaytonA

[trish6hundred]

Hi Mouth Breather,
WELCOME! to the forum.!
I’m sorry you are having such a rough time with CPAP therapy, I hope you find a solution to your problems.
Hang in there for more responses to your post.
Good luck to you on your CPAP journey.

[Gideon]

Welcome to the forum Mouth Breather.

Several suggestions, 

1. first, as has been mentioned above, try a Cervical collar.  This is fairly new to the Apnea scene and many here have been successful in using it to control their Mouth Breathing.
   
2. A Mask Liner (a cloth material us use between your face and the mask, might, only might, help you with your Pressure Urticaria Dermographism.
   
3. Read the Mask Primer, see if something there helps you with your mask fit.
   
4. Find and watch and read the manufactures video on fitting the specific masks that you are using.
   
5. Specific Masks to try would include 2 mentioned above, because they are different.  The ResMed AirTouch (not the airfit) F20 full face mask, the FitLife Full FACE mask (also covers the eyes) and the Oral Mask by Fisher & Paykel -- Absolutely no contact with the nose.
   
6. Finally a minimalist mask, ResMed P10 Pillows, I have used them with a BiPAP at 25/20 pressure in S Mode, something closer to your pressures than most users. 
   
7. One more, and IMHO opinion, download and install SleepyHead (free) and post your daily charts.  Those will say what is going on in extreme detail during your overnight use.  There are many here that are VERY adept at interpreting the results and you never know what will come of that until you do.  This may, or may not help you but it does allow the collective us to provide you with the best advice possible.
   

see Using_SleepyHead for all the how to's with the software.


Fred

[ajack]

I don't know who set up your machine but 30 25 would be hard to breathe. 25 OR 30 with exhale 15 if I had to and I would start with getting a sleepyhead chart up.
with 30 25 the backup breathing may not be doing anything much in volume

there has to be a good reason to need max 30. do you have a decent diagnose and titration sleep study?

[Mouth Breather]

I appreciate each of your responses. A lot of thoughtful input, thank you!

I will download the SleepyHead program immediately and start charting. I will also look online for a Cervical collar. I have also looked online at all the masks mentioned. I will request that my representative get those mask in for me to try.

I believe I had a correct diagnose and titration sleep study. Both tests were done at a hospital that has a special wing that specializes in sleep studies. The first one was where they found I stop breathing 80 times and hour. I went for a return visit for the titration setup. I slept fours on the second visit which was magical to me. I had no clue what it felt like to sleep four hours straight. I continued with the study drifting in an out of sleep as the nurse continued to come in and change masks or add a chin strap and finally to wake me up. 

I'm not very well informed on some of the questions that were asked when I created my account. I may have an app called DreamMapper, although it does not connect automatically to update my information. My husband is able to get the information downloaded to my phone. Not really sure what it shows.

My Dream Station has a memory card in it, but it does not download to the company that supplies my machine and masks/tubing/cushions/filters etc. She has to call when my husband is home and they do a 'hard download' and no information goes to my doctor. I only have two choices of companies in the town I live in. I decided on Community Home Oxygen. My clinician is very responsive and had no problem with me requesting masks from other companies as well as perhaps a different machine from another company.

Once again, I thank you all for your great information! I'm off now to download SleepyHead.

[Mouth Breather]

*I'll have my clinician get those masks in for me to try.

*I do have a feature on my machine when I start my it, I can hit the ramp button. It starts my pressures out at 15 and ramps up to 30 over 40 minutes. I can tell when I am not getting the 30 level as it is difficult for me to breathe. I do agree that I have an underlying issue that cause my pressures to be that high. I will followup with having my doctor refer me to an ENT doctor. 

ETA: The above information. I tried to edit my post before this one, but it didn't take it.

[Gideon]

Can you post your sleep studies.  Both the initial and the titration study.  There is likely something in there that will help us help you

thanks

Use Imgur and post the text for the link but add a space *http :"imgur.png" until you can post links.