Problems with Inhale Pressure, Continued

[Madalot]

Well, my DME switched out my bipap today. They opted to give me a different model, the older version of the respironics bipap (M Series Bipap Auto). What we found was a little surprising. This machine was actually worse! Sitting calmly, the machine simply did not recognize that I was inhaling and stayed at the exhale pressure of 6 (confirmed by feel AND the display on the machine). I made my husband come and look to make sure it appeared I was breathing like I normally do and I was NOT crazy. It just sat there, displaying 6.0 whether I was inhaling or exhaling!! If I took a forced deep breath, it would change, or if I got up and moved around, it would change. Otherwise, stayed at 6.0 the entire time.

We are switching the machines back out because even though the other one did this too, it was better and switched to the prescribed inhale pressure MOST of the time.

My RT agrees that we either need to change brands of bipap (going with a brand that has a sensitivity setting or backup) or going to the vpap, as mentioned by other posters here. Either way, we need my doctor to make that change, so until we can get her up to speed and get her to decide, I'm back to my old bipap that recognized my breathing pattern more often.

Are we having fun yet?

Update to the Update: You are just NOT going to believe this. My husband spent almost two hours at my DME, with the owner of the company that sat and helped him, to figure all of this out. The problem is my mask. Apparently, there is something about the valve in the mask that is preventing some of the machines from sensing the change from inhale/exhale and leaving you at an exhale pressure. The first bipap (newer model) was better and worked properly 80-90% of the time. The other bipap (older model) didn't work at all. The owner saw this himself. When he took the mask off and breathed through the hose alone, the machine worked perfectly. Hook up the mask -- stayed at 6. He took a brand new mask out (in case it was MY mask) and the brand new one did the same thing.

For now, I've got my old machine back and they are going to figure out what we need to do. They were on the phone with representatives from Respironics AND the mask companies, trying to figure out what in the heck is going on. The masks are all supposed to work with both cpap and bipap, but something about the valves in these masks makes them flaky with the bipap machines.

[Muse-Inc]

......You are just NOT going to believe this....The problem is my mask. Apparently, there is something about the valve in the mask that is preventing some of the machines from sensing the change from inhale/exhale and leaving you at an exhale pressure...on the phone with representatives from Respironics AND the mask companies, trying to figure out what in the heck is going on. The masks are all supposed to work with both cpap and bipap, but something about the valves in these masks makes them flaky with the bipap machines.

Oh my!!! Keep us posted!

[fadedgirl]

The masks are all supposed to work with both cpap and bipap, but something about the valves in these masks makes them flaky with the bipap machines.

This is very interesting!

I am having apnea brain today, so don't flame me, but wouldn't this problem then also occur on apaps? Or apaps w/EPR & Flex?

[jnk]

. . . My husband spent almost two hours at my DME . . .

Now THAT is true love. Because that's like, maybe, a root canal crossed with a kidney stone, or something. Keep him.

[sleepycarol]

I too am impressed with your hubby!!

Please keep us posted.

[Madalot]

I am going to reply to everyone in one post, if that's okay!

Yes, my hubby is a keeper in a major way. Since I was diagnosed with a neuromuscular disease (a muscular dystrophy of some kind), he has had to do so many things for me. A lot of husbands would have said "heck with this" and left. He is really, really great.

He brought my first bipap home last night and it works correctly 80-90% of the time. But even with this one, there were times I noticed that it was not switching to the inhale pressure. I complained about that two weeks ago and that was one of those instances where my RT just started changing the settings and rushed me in and out of there. While she did do something, she didn't really take a firm interest in what was happening.

After we brought home the second machine yesterday (and learned that from now on, we take my hose, mask, everything and TEST TEST TEST before we leave the DME), and found it BARELY worked, we knew something was definitely up. Even when my husband took the machine back, the owner of the company said it didn't make sense. He didn't believe us, but my husband said "I sat there and watched Kathy breathing and the machine just stayed at 6." The owner finally pulled a brand new mask out (my model) and hooked it up himself. My husband said he about passed out trying to breath hard enough to get it to switch to the inhale pressure (now 14 for me). He finally took the mask off and breathed just through the hose and the machine worked just fine -- 6/14, 6/14, 6/14. The mask has some kind of an issue.

I know that my RT got herself an MAJOR ear full, not because she didn't catch this (this is a tough one and totally unexpected) but because she didn't investigate more fully and take me more seriously.

And this poses the question -- how many people out there are NOT getting the prescribed therapy and just don't realize it? I think the owner of the company is scared over this now.

I'll keep you guys posted, but as of right now, my mask is not working properly with both bipaps I had. Very scary.

[jnk]

When you breathe directly into the hose, there is no intentional venting occurring, because there is no mask. That may allow the sensors to notice when to switch pressures. But a machine should be able to sense when a patient breathes in and breathes out as the patient wears the mask. Just because taking the mask out of the loop solves the problem does NOT mean it is necessarily the fault of the mask. On the other hand, I believe that most bilevels say in the manual that you should only use a mask that their brand of machine is designed to work with, a mask made by them. I personally believe that is more than an attempt to sell masks, although my opinion may be in the minority about that on this board.

I say, MAKE them let you try a ResMed bilevel, and MAKE them adjust the sensitivity of how the machine senses the change to IPAP. Either that, or MAKE them give you a machine with a timed backup. And tell them they do NOT want me or carbonman to have to show up down there, because neither of us are anywhere near as nice as your husband is. If I had to spend two hours at a DME, either I or the DME would end up having to call 911.

[carbonman]

And tell them they do NOT want me or carbonman to have to show up down there, because neither of us are anywhere near as nice as your husband is.

....ah....roger that Houston.....we are...ah....standing by.....

[Madalot]

You guys are so funny -- you just crack me up!!

I appreciate all the insight and advice. We are going to give the DME a chance to investigate and resolve this. For right now, I'm okay on my old bipap. I think I could count about 20 times while I was awake that I could tell it had not switched to the inhale pressure. Obviously I have no idea how much it did it while I was asleep, but I know that it switches a good percentage of the time. That other machine did not work at all.

I see my doctor tomorrow and will discuss all of this with her too. Get her take on it. And go from there.

I will definitely keep you posted.

[Sleepy Taz]

[quote="Madalot"]You guys are so funny -- you just crack me up!!

I would be careful consorting with the likes of jnk and Carbonman as one is a secret flamer, and the other instigates hordes of people to riot against DME’s, RT’s and sleep doctors who fail to care. You could gain a “reputation” that will follow you wherever you go .

[rjjayrt]

To have the problem with two machines and with two masks seems to me to indicate something is amiss in the settings. First of all these machines have diagnostic features, I can imagine one failing but two, I don't think so. Same with the mask, I've set many many bipaps on patients with F&P 431 FFM and have never had a problem. The only things I can think of are maybe the rise time and use of biflex or ramp are conflicting (rise time too high while using Biflex or ramp) the second could be that the mask isn't sealing well, those cushions have to be seated well or they will leak badly. (sealing to the mask frame not the patient). I just can't fathom it being the machine. It would be nice to know what your normal VT is, guess it could be so low that its not triggering the machine, bvut that should be obvious. Please let us know the answer, you've got a good mystery going on and we want to know how it ends.

[Madalot]

You guys are so funny -- you just crack me up!!

I would be careful consorting with the likes of jnk and Carbonman as one is a secret flamer, and the other instigates hordes of people to riot against DME’s, RT’s and sleep doctors who fail to care. You could gain a “reputation” that will follow you wherever you go .

That's okay. I already have a reputation as somebody that has a lot of patience, but if you push me too far, I will come back at you like a ton of bricks. I may be in a wheelchair, but I am feisty!!

[Madalot]

To have the problem with two machines and with two masks seems to me to indicate something is amiss in the settings. First of all these machines have diagnostic features, I can imagine one failing but two, I don't think so. Same with the mask, I've set many many bipaps on patients with F&P 431 FFM and have never had a problem. The only things I can think of are maybe the rise time and use of biflex or ramp are conflicting (rise time too high while using Biflex or ramp) the second could be that the mask isn't sealing well, those cushions have to be seated well or they will leak badly. (sealing to the mask frame not the patient). I just can't fathom it being the machine. It would be nice to know what your normal VT is, guess it could be so low that its not triggering the machine, bvut that should be obvious. Please let us know the answer, you've got a good mystery going on and we want to know how it ends.

See, this is kind of how I feel about this too. When I first got the bipap, the woman (not RT) that gave it to me told me NOT to use the ramp. My brain thought about that and it makes sense. If I'm on a straight bipap machine at 6/12 and I LOVE the inhale pressure because it's easier for me to breathe, why would I use the ramp? I wouldn't. But when I first took the machine in, complaining that it isn't always changing to the inhale pressure, my RT suggested that I use the ramp??? That just doesn't make any sense to me.

The ramp is now disabled, which is fine because I don't want it. The bi-flex has been set everywhere, and it isn't making any difference. Even as of yesterday, they were suggesting that I change the bi-flex, but since it's the INHALATION pressure that is giving me problems, this just doesn't make sense to me. Maybe I'm just not seeing the entire picture, which I admit is possible. But it would help if I could understand their reasoning for suggesting these things.

Am I nuts or stupid? Or are some of these things they're suggesting just not logical?

[jnk]

Well, I think it is a great machine for the people it works well for. BUT, a number of us have had some problems with the machine syncing to our breathing when we have used that machine, for one reason or another, and we do not have a neuromuscular problem. That machine uses a number of ways of sensing when to change pressures, and it can get confused, especially if a mask is prone to leaks or movement up and down on a person's face as the pressures change from IPAP to EPAP to IPAP again.

It is my experience that the ResMed sensitivity adjustments are a useful feature and that the way it senses when to change pressures has been more reliable for me in my use of bilevel.

Again, I am not attacking that brand. I eventually got good therapy with it when I used it. And I love the software for it and many other things about the machine. But I would recommend to anyone having trouble with it sensing the trigger and cycle moments that they should see how a ResMed does for him or her.

Sorry to keep making that point. I'll shut up now.

[Madalot]

Well, I think it is a great machine for the people it works well for. BUT, a number of us have had some problems with the machine syncing to our breathing when we have used that machine, for one reason or another, and we do not have a neuromuscular problem. That machine uses a number of ways of sensing when to change pressures, and it can get confused, especially if a mask is prone to leaks or movement up and down on a person's face as the pressures change from IPAP to EPAP to IPAP again.

It is my experience that the ResMed sensitivity adjustments are a useful feature and that the way it senses when to change pressures has been more reliable for me in my use of bilevel.

Again, I am not attacking that brand. I eventually got good therapy with it when I used it. And I love the software for it and many other things about the machine. But I would recommend to anyone having trouble with it sensing the trigger and cycle moments that they should see how a ResMed does for him or her.

Sorry to keep making that point. I'll shut up now.

No, no, please don't "shut up" now!! I need this information. I think you are probably right and I AM going to bring this up to my doctor tomorrow. She had already suggested that I needed to adjust the sensitivity on my current machine, but she may not be aware of the exact machine I have. I WILL discuss this with her and see what she says.

For everyone else here -- if you feel strongly about something, I have no problem with you suggesting it. If I say, No, I don't want to go there, then it should be dropped and not pushed on me any further. But if you continue to suggest something and I have not said NO, bring it on!!

I am in a serious learning curve right now and I'll take all the suggestions I can get!!