BiPap Mask

[VoiceforLinda]

Hello, I am on my fourth mask and am now having pain from the pressure points. I have used the nasal pillows, the full face mask, the nasal pillows with the mouth piece. I am very frustrated. I have been searching online and came across this one. SleepWeaver ADVANCE CPAP Mask + Headgear - DirectHomeMedical.com
Does anyone have any experience with this one? Would this work for the problems us ALS patients have? I have had my BiPap machine for over three months and it has mostly sat on my nightstand. When I finally got a mask that fit the first few nights went well and I was finally starting to get to feeling better. Now after some use the pressure points are not just sore it is painful so I rip it off and just go to sleep without it. When I can I am using the nasal pillows while I am awake but I know that using it during sleep is most critical. Any advice or knowledge of this particular mask is very much appreciated.
Linda

 

[brooksea]

I found this info re the mask you are wanting:

Pressure Range: With regards to very low or extremely high pressure, the SleepWeaver is FDA approved for pressures between 4 and 20cm H2o. Do not use the SleepWeaver If you are using a BiPAP machine with inhalation pressures higher than 20cm H2o.

If you do an investigation using the name of the mask and BiPap. You will find what I reference. I would post it, but it will go to mod.

Looks like a nifty mask! Hope you will be able to use it. Will you let us know?

 

[notme]

Is it possible that you're tightening the headgear too tight? When I woke up at the sleep study--my entire FACE was swollen. I don't wear it as tight as they had it (though still seals) and no more swelling--or pain.

Sounds like the soft portions of your mask is breaking down and letting the harder parts press, perhaps? Sorry, know nothing on the particular mask you're wondering about.

 

[VoiceforLinda]

Thank you for your insight. The mask I have is a Mirage Quattro XS. I have tried loosening it but air escapes. I think I just need to quit complaining and accept that it is what it is and I need to get used to it. I guess I need to let go and give it to God. He can take care of the anxiety, pain and claustrophobia. It could be worse and I need to appreciate the good blessings I have.

 

[tmasters]

Linda,

One possibility is you're using the wrong size mask. But since this happens with multiple mask styles not very likely. Did an RT fit you in person or did somebody just ship you the mask and let you figure it out? Also, there is a product called "moleskin" which can help with the skin irritation. I don't use it but some here have.

It can be a bit of a battle nonetheless. Stick with it, it will prolong your life!

-Tom

 

[notme]

Yes--don't give up trying to find a solution. You have every right to make it as comfortable as possible, hon. The tech had mine much too tight. And one mask didn't fit properly.

So, please do continue to try and find a solution. Perhaps even alternating types of masks to give areas that are irritated a chance to recuperate? For instance, full face, nasal mask, pillows...?

I complain a LOT more than you ever have--and with a LOT less provocation. That's why we're here. The moleskin may well solve the problem.

Only suggestion for the claustrophobia feeling is try wearing it a little more during the day and sitting up? (I don't know if you're on 24/7 or just as needed at night/naps)

 

[VoiceforLinda]

I won't give up on using it. I use it during the day for naps and am supposed to use it all night. The RT that we are working with continually asks my husband what does she want? Like I would know? I have no clue what to ask for. They treat us like we should have the answers. My husband gets very frustrated with them. They tell me my choices are limited because they don't make many models in extra small. That is why I started searching here on the forum and online for something, anything that might work. I am very disappointed with the company that is supplying the machine and the care or I should say the lack of care. They require me to go to them for everything. When they do come to the house they send this guy that doesn't speak to me. He speaks to my husband like I am not in the room. He brought me a mask that was so large it went in to my eyes. I tried it on and said this won't work. He said well you tried it on so now you have to take it. He said I can't use it on anyone else because it can't be cleaned. I was shocked. Told him that isn't right and he should be doing everything he can to help me, not stick me with something that isn't right. Okay enough complaining. I will figure this out. I feel better just getting it out. Thank you all for listening and caring. I get emotional when I don't feel good. No BiPap therapy makes me feel really sick and weak. I will go hook up to it. Happy thoughts. Happy thoughts!
Linda

 

[Mark's Girl]

Hi Linda,

My husband developed a bad pressure sore across the bridge of his nose from his mask. We are now using a Gel pad that fits across the bridge of his nose as a layer between the mask and the top of his nose and the problem is solved...our RT got them for us. (We had to take him off of the Bipap for a few nights until the sore healed first.) The pad compresses and keeps a good seal. I hope this helps!

D

 

[VoiceforLinda]

Thank you D, I will see if I can get a gel pad. I appreciate the advice.
Linda

 

[notme]

HI LInda

Fire the company and get a different RT company. They SHOULD be coming to you. If you are on medicare--it's part of the service. You are only allowed a specific number of masks per year.

If it's not too difficult--see if your husband can take you to a sleep study clinic. They have masks--and I assure you, they don't dispose of them, they are cleaned and used. See if they will let you try til they find one that fits you properly.

There are a variety of styles--a med supply store might have samples you can try, too, to see if one is more comfortable than the other. I use a small--but I do recall that at the sleep study, they had it way, way too tight and my entire face hurt and swelled up.

I saw one with kind of pillows that goes over the top of the head, leaving he mouth area clear--which might help with claustrophobic feelings. Definitely get a new RT that will bring what you need.

I'm in the same situation--the RT isn't showing up and I have to get a new company. Another company CALLED them for me and made them deliver o2. They called and apologized all over themselves and promised to bring me a new mask--that was 3 weeks ago. I'm not holding my breathe.

 

[VoiceforLinda]

Notme,
I am definately considering getting a new company. I will be getting my PEG tube on the 18th and they are supposed to be my supplier for those needs also. I am feeling the dread of dealing with them for that. I think I will have my husband put in a call to the social worker at the ALS clinic and discuss our other options. I am used to handling all these details and losing the ability to speak for myself is excrutiating. I want to pick up the phone and just handle it. I never realized what a control freak I was until I lost my voice. Ha! My husband is great but he usually gets the phone calls during the day when he is at work. Makes it hard for him to be the middle man. My next mission is to get all my providers email address so I can speak for myself and not be dependent on others. I have decided that if email is not an option then I will not deal with the company. In this day and age everyone should have a work email. Thanks for listening!
Blessings,
Linda

 

[notme]

Linda

Can you get the kind of phone that will let you type your part? Or a speaker phone and use a tablet or computer to speak as you type?

 

[susanf]

Linda,
I'm having the same problem using the phone. Bill is making all my calls for me now because i feel so self conscience.

 

[notme]

If either of you have an iPad, there is a program that is FREE that does text to speech--and you could use it with the phone on speaker. It's called verbally. Has word prediction and some phrases already there. iPads are pretty loud if you turn the volume up. might work?

 

[lgelb]

Re trying out masks, some Web sites have mask return insurance so that you can try and return if doesn't work, for a lot less than just eating the full cost. There are so many masks now that no DME is going to stock the full range, or even be familiar with it. As I have mentioned before, I don't work with a DME for BiPAP because there's no advantage for us, but everyone has had different experiences.

Besides the moleskin others have mentioned, there are also fleece strips for cushioning the headgear, Transpore tape for the nose bridge (my husband uses 3 layers every night), and don't underestimate the importance of a clean face/mask for a good seal without leaks and the right level of heated humidification. If you are uncomfortable breathing, the pressure points are going to keep you awake, because something is always going to keep you awake, if that makes sense.

I wasn't clear if pressure across the top of the head/forehead is one of your pressure points, but if so, I would try one of the masks that has no forehead support. Likewise, if the nose bridge is the big problem, headgear that crosses the back of the head at multiple points (e.g. a cutout rectangle shape) will help. Some headgear works across multiple masks, so mixing and matching can work, too. And some of the inexpensive headgear that is sold separately is the most comfortable -- there is a grey fleece version available that my husband finds very comfortable in colder weather but he uses the OEM headgear in warmer months. It can also be good to alternate headgear to avoid aggravating the same pressure points over a period of time.