Concerned - increased Pressure and Mask questions

randezhnee · Post by **randezhnee** » Thu Sep 07, 2006 8:29 am

My husband is a fairly new cpap user. He has an Resmed Ultra Mirage II Mask & Headgear nasal mask and a 600 series Fisher Paykel cpap machine with a heated hose. I'm hoping someone with more experience than us can help with some questions.

His first setting was 11.
His mask works well as long as his lips don't pop and leak. He went to our DME RT and tried on a couple of full face masks but unfortunately they only had 2 different styles and neither would seal on his face properly no matter what they did with the straps or sizes. So he went home with his mask and decided he'd just have to deal with it, feeling rather frustrated to say the least. I've brought up taping his mouth and he gives me that "are you crazy" look. I understand his reluctance to the idea but I'm at a loss.

So - now the "cherry on the cake" as they say. He went in for a trituration study last night. They didn't have any full face masks other than the two he had tried at the DME so he used his nasal mask. They were adjusting his pressure and had to come in to tighten his head gear a couple of times (due to increasing his pressure).

Later in the night they tried a c-flex or an apap machine (he wasn't sure), he said that only lasted a little while due to the fact that his mask was actually "pumping" on his face with the increasing and decreasing pressure. At about 3am he had an attack of acid reflux and at that time they decided to call it a night (he couldn't get back to sleep).

They told him they had enough information. His pressure was raised from 11 (his initial setting for the last 3 weeks) to now 17.

I don't know how he's going to deal with 17 seeing that he was struggling at times at 11. It seems like unless you're willing to purchase several masks you're stuck with the couple your DME has on hand to try on. I'm concerned about his compliance from this point on. He understands the health risks and tries very hard but is a bit alarmed with a pressure setting of 17 and having to deal with it.

Does anyone have any suggestions - helpful hints or experience regarding a setting this high? Can anyone tell me if the Hybrid mask works with a pressure of 17? I only wish a full face mask would have worked out for him - at 11 he was doing OK with the nasal and was willing to put up with the blow fish cheeks and lip pops but at 17 I can't see him being as patient.

Any help, suggestions and especially experiences would be greatly appreciated.

Thank you,
a worried wife

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CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, activa, hose, C-FLEX, CPAP, DME, seal

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CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, resmed, mirage, hose, C-FLEX, CPAP, DME, seal

path2others · Post by **path2others** » Thu Sep 07, 2006 9:35 am

Hi, It is nice to see a spouse involved with her husbands treatment. I used a chin strap for a few weeks to "train" my throat to stay closed and minimize the air escaping from my lips. It was the first thing I pulled off in the middle of the night but at least I kept the mask on my face.
Is it possible for your husband to get an APAP? It would only increase his pressure as it is needed during the night. My titrated pressure was 9 but I am a lot higher than that according to my software. I average about 14 and am up to 19 some nights.
Your biggest worry is over now that your husband is getting treatment for his sleep apnea. It can take weeks for everything to fall into place. Don

Goofproof · Post by **Goofproof** » Thu Sep 07, 2006 9:49 am

Your husband would benefit from a Remstar Auto Bi-PAP, unlike most that are getting them, he has a real need. I also don't trust his sleep study, it sounds fishy. The Auto Bi-PAP would help him cope with the high pressures. and more mportant when set up correctly could help him find the correct pressure. The Bi-Flex could make treatment liveable. Even if you had to get it out of pocket, it would be a good investment, and the software to follow the treatment. Jim

randezhnee · Post by **randezhnee** » Thu Sep 07, 2006 9:50 am

Thank you for your input Don.

We have a follow up appt on the 19th of this month with his Dr. I'm going along and I'll be sure to ask about the APAP.

The sleep study was preformed of course on his back, and he had to take an Ambien to fall asleep. Between sleeping on his back and the sleep meds I'm sure he was just encouraging problem breathing.

I pray we get to a point that he's satisfied with a mask and machine and we both get a good nights sleep.

Maybe when the DR sees 17 he may even suggest changing to an APAP from the CPAP.

Thanks again -
Randy's concerned wife Barb =)

randezhnee · Post by **randezhnee** » Thu Sep 07, 2006 9:55 am

Jim,

What is the difference between an APAP and an Auto BiPAP? You mentioned you thought his sleep study was fishy - could you please explain why.

This is all so new to both of us. He trusts me to do the reading and research so I'm trying to learn anything and everything I can.

Thank you!

CollegeGirl · Post by **CollegeGirl** » Thu Sep 07, 2006 9:59 am

Hi Barb,

What Jim said is good advice. BiPAP is made for people with high pressures (like your husband's). It provides one pressure (for him, that would be 17) on the inhale, and something lower on the exhale, making it substantially easier for him to breathe at such a high pressure. If you were able to get an Auto Bipap, you would have this feature, and the machine would also adjust itself to give him higher pressures when he needs it, but lower pressures when he doesn't. This would really help him tolerate treatment better, I would imagine.

His biggest problem right now, though, is the mouth leak. If the pressurized air is going *out* of his mouth, it's not keeping his throat open. If your mouth is leaking, you aren't getting anything close to the treatment that you need. It's crucial that this is remedied for him as soon as possible. If those two full face masks don't work, it's really important that you look into others (if he is unwilling to tape his mouth). If your DME won't let you try others, get his face measurements on cpap.com and call the cpap.com support people with them. They can help you find a full face mask that should work for him. They're very helpful that way. What two masks did he try, do you know?

A chin strap is something your DME will try to pawn off on you. For most people, these don't work, because while they keep your jaw closed, there's nothing to prevent your lips from opening and leaking air, anyway.

Good luck, and if you have any questions, feel free to ask.

Guest · Post by **Guest** » Thu Sep 07, 2006 10:18 am

You could also call around town to see if any other DME companies have other masks on hand to try. Getting the mask right is one of the hardest things only because there are so many different types (Not even counting all the different sizes!) and every single persons experience will be different.
There will be a period of difficulty adjusting to treatment though. It's a sad truth. We simply aren't easily adjusting to going to sleep with something strapped to our faces blowing air in our nose all night! Don't give up though!
I have found that as time goes on it has become more and more natural to me to keep both my mouth and my airway closed off. It was very tough at first and I did have problems opening up at night while I was asleep. Now based on my last download it appears it's stopped completely.
As to the sleep study being fishy - that's a very tough call to make. Most people will go through until at least 5 or 6am. However there could very well have been enough information gathered to dial in a good pressure. It would be impossible to tell without seeing all the details from the report.
I wouldn't worry about that. If there were any serious problems your doctor will see it when looking over the report. It's pretty hard to miss.

Goofproof · Post by **Goofproof** » Thu Sep 07, 2006 10:29 am

The fact they show such a wide change in his pressure between his studies, leaves a lot of concern. The fact he was put on sleep drugs, that's not the way most people sleep at home.

It is great you can make the added effort to see that he gets the correct treatment. Trying to find it in the medical maze it hard enough, but when you don't feel good it makes it even worse. It's nice to have someone to watch your back.

As Collegegirl said, Auto Bi-PAP, allows you to have one pressure to breath in (I-PAP) say for exhample 17 CM and another to breath out against (E-PAP) say 14 CM, This makes for easier breathing against the machine, and less leaks...

Also with the Remstar Auto Bi-PAP, you get a feature called B-Flex, It allows for even more exhale relief, giving a more natural feel to breathing.

And last but not least, the fact that it is a Auto Adjust, I can adjust it's pressure up and down a Range of pressures, so you can have the lowest pressure needed for the best treatment all the time. No need to use more pressure than required for the correct treatment.

I don't use a Auto Bi-PAP, So others here know better about the set up of one. I use the Remstar APAP, because it works fine for my pressure range, and I didn't have much trouble coping with 15 Cm.

But for your husband the Remstar Auto Bi-PAP, with Heated Humidifier seems to be the best choice. The software and reader are a must if you want to control your own treatment.

I would also consider using a FF Mask, most don't like them, but they are the surest way to correct treatment, other than mouth taping.

Good Luck on your quest, lots of good info on this site. Jim

randezhnee · Post by **randezhnee** » Thu Sep 07, 2006 10:33 am

Collegegirl,

The auto BiPAP sounds like it would be nice for him. Is there a big difference between the Auto BiPAP and and APAP? Sorry for all the questions. I'm hoping the Dr is willing to be flexible when we see him and let us try something that may help with the increased pressure.

I believe (by how he described the masks) that he tired one the FP FlexiFit 431 which he said didn't fit at all unless they tightened the headgear so tight it was very uncomfortable. He also tried the Ultra Mirage FF - he had a lot of leakage near his eyes. They tried different sizes too.

I thought we'd try out different masks this year as our insurance would allow (either it was 3 or 6 mo replacement). Now with the increased pressure we're dealing with a whole other issue. Trouble is too - our insurance requires purchasing the machines not renting - I wonder what they'll do if he needs to change to a bipap.

Guest -

Thank you so much for your input too! It's so helpful having people to talk about this with.

randezhnee · Post by **randezhnee** » Thu Sep 07, 2006 10:41 am

Goofproof,

Thank you so much for the advice. I'm going to be sure to have my husband read this when he gets home tonight. Maybe its a good thing we have sometime before we have to see the DR to get our "ducks in a row" so to speak.

I'm going to take notes and ask a lot of questions. I'm also going to try to get a hold of the RT that fitted him back in the beginning and ask her opinion before we go see the Dr. I'm not sure what she'll be able to offer as far as advice (or what she's allowed to offer) but it can't hurt.

As far as the Ambien goes - his 1st sleep study wasn't very accurate - they said they couldn't get a good reading on him due to waking etc. His settings were anywhere from 9 to 18 that first night. The Dr suggested the Ambien for the 2nd study, but that stuff knocks him out big time - he did sleep a few hours. I'm hoping that's all they needed.

Goofproof · Post by **Goofproof** » Thu Sep 07, 2006 10:57 am

I use the Comfortfull2, while it's not perfect, it works and provides good numbers. (Results) I also have used the F & P 431, it fit better, but for some reason unknown it didn't provide as good of results. That's the good part of the software it helps you decide what's working for you and what's working against you. Without it for are flying blind.

You better get some bread crumbs ready, to guide those ducks, that's what I use to keep mine in line. and the threat of the 12 Ga. Jim

Goofproof · Post by **Goofproof** » Thu Sep 07, 2006 10:59 am

As for as notes, don't forget Copy, paste and print in notepad, it make life easyier. Jim

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