New Member -- Equipment Question & Help

[Madalot]

Hello Everyone --

I have been perusing this site for a few weeks now and have found some incredibly helpful information. It's nice to have a place to go to read and get help.

Brief History -- I have a progressive neuromuscular disease and began having trouble breathing at night last year. LONG story short, my pulmonologist opted to do sleep studies and found that I have moderate sleep apnea with severe oxygen desaturation. I ended up on a CPAP machine in November, but after a month of using it and changing settings, we found that I could not breathe against the pressure and was switched to a BIPAP machine in December. While I like the BIPAP better, we found that I was still having some issues, so my doctor ordered oxygen through the BIPAP about 10 days ago.

All in all, I am very happy being on the machine and have been extremely compliant in its use. The reason for this is that I knew I was having trouble breathing at night and the machine makes it much easier to breathe and fall asleep. The added oxygen has been great in helping with my breathing problems.

Now -- here's my question. My BIPAP is set to 12/6 (inhale/exhale) pressures. I have noticed that there at times I can tell it is NOT blowing at 12 when I inhale. It feels like it's still at a 6 even though I'm definitely inhaling. Most of the time when this happens (maybe once or twice a night that I know of), once I take a second breath in, it switches to the 12.

I took the machine to my DME to have them look at it. What they said confused me, so I thought I would check with some of the experts.

On my machine under "Settings" (the ones the patient is allowed to change), there are two options:

Auto On
Auto Off

BOTH of these can be set to On or Off. According to the manual on the machine, these are settings for turning the machine on and off based on when the mask is put on and taken off. I had both set to ON because I wanted the machine to come on automatically when it sensed the mask and to turn off when the mask was removed.

According to my DME, these settings are the automatic on the BREATHING. She claimed that because Auto On was set to ON, it was using the automatic settings to determine my breathing patterns, thus when it was blowing at 12 it was because of that. She changed it to OFF.

Am I missing something here or is my DME confused? It seems to me that if your doctor wanted your machine set to automatic to change the pressure based on your breathing patterns, that setting would be under the clinicians settings and NOT where the patient could willy nilly change them.

Thoughts?

[jnk]

I believe that the auto on and auto off features are for setting whether or not the machine turns completely on or completely off when it senses your mask is on or your mask is off.

If that brand is having trouble sensing when you breathe in because of your particular condition and the machine has no adjustments for setting the sensitivity of its sensors, you might do better with another brand that has sensitivity settings so that it can adjust to your way of breathing.

I am just a fellow patient making assumptions, though.

jeff

[Madalot]

Hey Jeff --

Thanks for the reply. This is what I think too, but my DME AND my support center at my sleep lab are telling me differently -- that those settings are for the automatic breathing settings. It was getting a tad annoying because even the manual agreed that those settings are for turning the machine on/off based on sensing the mask.

I'm supposed to see my doctor next month and plan to discuss this with her in detail then.

I appreciate your reply and thank you for supporting me. I was beginning to think I was stupid.

[jnk]

You are most certainly not stupid. Anyone who finds this forum and figures out how to sign up and post an intelligent question such as yours has passed the non-stupid test with flying colors.

As you say, the user manual for your machine states:

Auto on - You can enable this feature if you want the device to automatically turn the airflow on whenever you apply the interface (mask) to your airway.
Auto off - You can enable this feature if you want the device to automatically turn the airflow off whenever you remove the interface (mask) from your airway

.

http://bipaps.respironics.com/PDF/BIPAP ... Manual.pdf

If your diaphragm is not acting within the parameters of what that machine expects, it may sometimes miss sensing when you start to breathe in. If it only happens a couple of times a night, it may not be a big deal at all. I think that can happen once in a while with anybody with that machine. But if it starts happening a lot, you may need to use a machine with variable sensitivity or a timed backup rate for breathing. So I would not worry about it if it is occasional, but I would still stay aware of it for in case it ever starts happening a lot.

Again, though, I am not a medical professional, and this is, after all, the Internet, so I could be a crazy guy pretending to know things I don't. File it under: One guy's opinion.

jeff

[BleepingBeauty]

I was beginning to think I was stupid.

Nope, you're not. Whoever is telling you that the Auto On/Off setting impacts the type of treatment you're getting (i.e., fixed pressure settings vs. auto-titration with a range of pressure settings) is wrong/incompetent/dumb (take your pick).

Better that you find out now: Many "professionals" in this field are woefully ignorant about the equipment we use and the data it produces. It's a good thing you found this forum. Welcome!

P.S. Jeff is a crazy guy on the internet , but he does know what he's talking about.

[Madalot]

Thank you for the replies. It definitely makes it easier when someone confirms that you're not crazy. Well, I may be slightly crazy, but I'm not stupid. I read the manual and came to the same conclusion.

In all honesty, my DME did the same thing with my cpap machine and I wondered about it then. I think the smartest course for me is to discuss this with my doctor and make any changes in equipment & DME provider.

[Slinky]

My bi-level has an SmartStart option. I HATE it! I prefer, and am quite capable of turning my device on and off as needed.

It tends to blow for a few seconds after I take my mask off and my hubby is a light sleeper. He doesn't need that racket waking him. Thank goodness I CAN turn the SmartStop OFF!

Most of the time my bi-level WILL turn on when I don my mask. But I have COPD and there are times that evidently my first inhalation or two isn't strong enough to turn it on. I can sit there and force a couple of strong inhalations to turn it on - but that On/Off button is one h*ll of a whole lot faster and easier to turn it on.

[Madalot]

I had posted a fairly long reply, but it didn't show up.

I have noticed that the machine is sometimes NOT blowing at 12 early in the mornings. When I had noticed this issue before, it was usually before falling asleep and the machine always switched to 12 after one inhale/exhale. The problem in the mornings (not every morning, but two out of the last five), the machine is NOT blowing at 12 even after several inhale/exhale routines. If it's doing this like that in the morning, I can't help but wonder if it's doing it during the night while I'm sleeping.

Well -- one thing I've learned from reading these forums is that it definitely takes time to get everything situated properly and you have to be willing to keep trying before you get totally settled.

[ozij]

Yes - and before you go to the doctor, bone up on the Respironics AVAPS (Assured Volume Assisted Pressure Support). That is a machine specifically intended for people with neuromuscular disorders that restrict their breathing.

http://sleepdevices.respironics.com/PDF ... pGuide.pdf

http://www.internetage.ws/cpapdata/manu ... nd_pap.pdf

And http://avaps.respironics.com/Features.asp

This is not the machine with a similar name -- ASV -- so don't let the names confuse you (or your doctor).

Welcome to the forum, and good luck

O.

[jnk]

Thank you for the replies. It definitely makes it easier when someone confirms that you're not crazy. Well, I may be slightly crazy, but I'm not stupid. I read the manual and came to the same conclusion.

In all honesty, my DME did the same thing with my cpap machine and I wondered about it then. I think the smartest course for me is to discuss this with my doctor and make any changes in equipment & DME provider.

I think the smartest course is for you to continue to educate yourself about your condition and machines and to recognize the limitations of whichever medical professionals you allow to be part of your medical team.

Some respiratory therapists at DMEs are very knowledgeable and helpful. Others, perhaps the majority, are less so. Some sleep docs understand home machines. Others, perhaps the majority, do not--especially with newer models of bilevel machines, such as yours.

Keep learning. That way you can phrase well-crafted questions that guide your medical professionals. Yes, they should know more than they do. But in the interests of never burning bridges, it is rarely good to make it clear you are aware of how little they know.

Be aware, though, that once your brain gets used to the changes in pressure between IPAP (breathe-in pressure) and EPAP (breathe-out pressure) from your machine overnight, it tends to tune it out. So the only way you can be sure whether the transition is happening is to look at the LCD screen as it reports delivered pressures.

Sleep medicine is, relatively speaking, in its infancy. That puts the burden on you to spend the time and effort to learn all you can so you can make up for the limitations of those around you.

jeff

[Komodo]

. I have noticed that there at times I can tell it is NOT blowing at 12 when I inhale.....
Thoughts?

This may have NOTHING to do with your problem, but I had the same thing happen to me a few months ago. My machine started out fine, but by the middle of the night I could tell the pressure wasn't there anymore. My machine was only 4 months old at the time. My DME gave me a new machine, and everything has been fine since.

Maybe, MAYBE, there is a problem with YOUR machine too. If your DME will replace your machine without any problems, it might be worth a try.

[jnk]

Good point, Komodo.

Also, large leaks can make it difficult for a machine to sense a patient's breathing.

Certain masks, I believe, can make it more difficult for a machine to sense a patient's breathing.

ResMed bilevels have adjustments for sensitivity of the sensors that sense the indication for transitioning to IPAP.

Ozij, as usual, made a VERY good suggestion above about other machines.

[GumbyCT]

Just another wild and crazy guy but I haven't yet found an inter'net' yet? Or is that interyet?

I like to understand things and so I ask the hard questions everyone else will 'assume'.

How can you tell the pressure is in fact too low? Are you going by feel? Or looking at the display?

I am wondering if what you are feeling and what the RT is talking about is the "Ramp" feature?

While you are looking at the display - you picked a picture of your machine but they ALL look alike - they really do. So look at the writing across the top of the machine and tell me what the make and model is.

While you are at it tell me which make/model mask you are using? Should be a label on the head gear, usu. in the back. Edit: The mask size may be just a letter marking down by the chin? Depending on the make/model.

I think everyone should memorize the equipment they use and their pressure(s).

So that's mask and machine make and model and at what pressure(s).

[Slinky]

You are so right, Gumby, EVERY PAPper SHOULD KNOW the brand and model xPAP, brand and name of mask plus mask size, and their therapy settings.

It boggles my mind when EVERY support group meeting there is a least one person who is having problems but hasn't the SLIGHTEST idea of what brand or model xPAP they are using much less mask name and size and therapy settings. For someone to cry and p*ss and moan that their therapy isn't working but hasn't the least bit of interest in or the foggies notion of what equipment and therapy settings they have just undoes me. I get the urge to slap them aside the head.

[cflame1]

Is your machine set on Auto... or is it just set on Bipap?

If it's set on Auto, what's the PS set to... do you know? That may play into why it won't be a 12.