New BIPAP AVAPS user, totally clueless!

LankyLefty, aka Jason the sleep technician, just put out a video a few days ago on YouTube about how to unlock the clinical menu on a DreamStation.

https://www.youtube.com/watch?v=84LkXFETkt8

I would follow Palerider's suggestion though, and take some time to obtain and read over the clinical guide/manual, as that will be more well rounded and informative. But, we just want more information, we are not looking for you to change any settings at all necessarily.

Even if your menus are locked, the screen itself while using the device should show basic information such as the therapy mode (S/T, S, PC, etc), current pressure and leak level.

If your pressure is dynamic, meaning that it runs along a range and changes while you sit/lay there, most likely since you have the BiPAP AVAPS machine, that would mean that the AVAPS option is enabled.

AFAIK you would also see "S/T AVAPS" on the screen, but I'm only intimately familiar with the Trilogy 100 Ventilator, not the DreamStation series.

As a general precaution, I would take out the hose, humidifier chamber, and air intake filter, and then put those back in to make sure they are secure. If you hear noise from the machine itself, that sounds like there is a mechanical problem with the machine.

If your RT is not responsive, you may need to pester the medical supply company. If you have a neuromuscular disease, most likely they have a support phone line 24/7 for machine problems. For some people the device is considered life support...meaning it's dangerous to sleep without a functioning machine. Don't hold back at all - be polite but firm - and light a fire under their arse to fix the problem ASAP.

raisedfist wrote: ↑

Thu May 10, 2018 8:01 am

..................https://www.youtube.com/watch?v=84LkXFETkt8

I would follow Palerider's suggestion though, and take some time to obtain and read over the clinical guide/manual, as that will be more well rounded and informative. But, we just want more information, we are not looking for you to change any settings at all necessarily.

Even if your menus are locked, the screen itself while using the device should show basic information such as the therapy mode (S/T, S, PC, etc), current pressure and leak level.
..................
If your RT is not responsive, you may need to pester the medical supply company. If you have a neuromuscular disease, most likely they have a support phone line 24/7 for machine problems. For some people the device is considered life support...meaning it's dangerous to sleep without a functioning machine. Don't hold back at all - be polite but firm - and light a fire under their arse to fix the problem ASAP.

Thanks, raisedfist! The AVAPS option is enabled and it generally flexes at much lower pressure levels. The screen doesn't show leak level as far as I can tell, only the pressure in CM.

I do have a neuromuscular disease, myasthenia gravis. I was diagnosed not long ago with that and MS for the umpteenth time (we'll see if they're really sure this time) and am in the process of choosing meds, starting PT, got this BiPAP, and am a bit overwhelmed at the moment, but I do plan to do make this a priority this evening and try to hopefully learn a bit for myself how this is supposed to work. Trilogy was the machine that was suggested by neurology and I think the one the MG association recommends as the gold standard, but my pulmonologist felt that AVAPS was enough so we're trying that. I just called the medical supply company directly and let them know that I'm still waiting on a response.

Thanks again!

Hi Dogmum,

I have a Congenital Myasthenic Syndrome and use a Trilogy 100 with AVAPS. I'm following your thread carefully and will jump in if/when I feel I have something to offer.

I agree with the advice you have gotten. Please keep on them and keep the thread updated on your progress.

Madalot wrote: ↑

Thu May 10, 2018 9:20 am

Hi Dogmum,

I have a Congenital Myasthenic Syndrome and use a Trilogy 100 with AVAPS. I'm following your thread carefully and will jump in if/when I feel I have something to offer.

I agree with the advice you have gotten. Please keep on them and keep the thread updated on your progress.

Thanks, Madalot, and hello to a fellow Myasthenic! *waving hello*

Thanks, raisedfist! The AVAPS option is enabled and it generally flexes at much lower pressure levels. The screen doesn't show leak level as far as I can tell, only the pressure in CM.

I do have a neuromuscular disease, myasthenia gravis. I was diagnosed not long ago with that and MS for the umpteenth time (we'll see if they're really sure this time) and am in the process of choosing meds, starting PT, got this BiPAP, and am a bit overwhelmed at the moment, but I do plan to do make this a priority this evening and try to hopefully learn a bit for myself how this is supposed to work. Trilogy was the machine that was suggested by neurology and I think the one the MG association recommends as the gold standard, but my pulmonologist felt that AVAPS was enough so we're trying that. I just called the medical supply company directly and let them know that I'm still waiting on a response.

Thanks again!

Lower levels of IPAP while awake makes sense, as your respiratory system and muscles are more compliant and actively involved, so it's easier for you to "generate" the necessary average tidal volume target programmed into the machine. Your breathing becomes compromised during sleep, especially during REM sleep, where typically your diaphragm muscles don't work as efficiently, thus you yourself are not able ventilate adequately (hence the need for pressure support, and why IPAP increases to maintain adequate ventilation). Your vital capacity also decreases in the supine position (laying down on your back), so I would recommend avoiding that at all costs.

There are a lot of different factors, but the DreamStation AVAPS is a good machine. The Trilogy is an older machine, and a well tested work horse, but it is considered more of a life support machine than the DreamStation. It has more therapy modes, the ability to support invasive ventilation (people who have a tracheostomy, for example), alarms, battery backup/portability, etc,. The biggest advantage it has is more customization, especially considering the triggering, as you can customize the trigger and cycling sensitivities to a very precise degree. Triggering an inhalation can be difficult for someone with an NMD, and that ability can change over time. You may need the Trilogy, or a similar machine later on, but I don't know anything about MG and also every person is different either way.

If you don't need portable therapy during the day, and the device syncs with you well once you hammer out the kinks, the DreamStation will do just fine IMHO at this point. The Trilogy is also a pain in the ass to take if you travel - it's not real heavy, but it's still substantially larger and heavier than a BiPAP, and when I used to have one the TSA in the airport treated it like it was a bomb. They wiped it for explosives while I stood there off to the side and they told me not to move at all while they did. No joke.

It sounds like your pulmonoligist knows what they are doing - some don't even know what a Trilogy is. Non-invasive ventilation is not an easy subject, even for many physicians, so I would say there is nothing abnormal about feeling overwhelmed! I hope you get the answers and assistance you need.

Madalot wrote: ↑

Thu May 10, 2018 9:20 am

Hi Dogmum,

I have a Congenital Myasthenic Syndrome and use a Trilogy 100 with AVAPS. I'm following your thread carefully and will jump in if/when I feel I have something to offer.

I agree with the advice you have gotten. Please keep on them and keep the thread updated on your progress.

I was hoping you would enter the thread! Don't see you often but it's always a pleasure.

raisedfist wrote: ↑

Thu May 10, 2018 9:54 am

Madalot wrote: ↑

Thu May 10, 2018 9:20 am

Hi Dogmum,

I have a Congenital Myasthenic Syndrome and use a Trilogy 100 with AVAPS. I'm following your thread carefully and will jump in if/when I feel I have something to offer.

I agree with the advice you have gotten. Please keep on them and keep the thread updated on your progress.

I was hoping you would enter the thread! Don't see you often but it's always a pleasure.

Thanks, raisedfist. Going through a bit of a rough patch right now so I'm not around as much as before. I am subscribed to this thread so I'll try to keep an eye on it as much as I can.

raisedfist wrote: ↑

Thu May 10, 2018 9:52 am

.....
Lower levels of IPAP while awake makes sense, as your respiratory system and muscles are more compliant and actively involved, so it's easier for you to "generate" the necessary average tidal volume target programmed into the machine. Your breathing becomes compromised during sleep, especially during REM sleep, where typically your diaphragm muscles don't work as efficiently, thus you yourself are not able ventilate adequately (hence the need for pressure support, and why IPAP increases to maintain adequate ventilation). Your vital capacity also decreases in the supine position (laying down on your back), so I would recommend avoiding that at all costs.
.....

All great info, thank you so much! I haven't been able to sleep flat in years, so this makes sense. My REM onset is delayed and according to a quick look at my fitbit sleep tracker (reliable?) that's about the time I have been waking up with the machine going bananas. I appreciate the explanations!

All great info, thank you so much! I haven't been able to sleep flat in years, so this makes sense. My REM onset is delayed and according to a quick look at my fitbit sleep tracker (reliable?) that's about the time I have been waking up with the machine going bananas. I appreciate the explanations!

No idea about the fitbit. When you are able to get menu access, there should be a leak alarm you can enable - just to make sure that's not the culprit. Let's hope your medical company will have the RT or someone else come out and check that your machine is functioning properly.

Believe it or not, I've been working on this all this time and still it's not completely resolved. My RT is super nice, but despite promising to come out many times, he has still not been out to see me since initial setup in April. I took my machine to sleep dr and she lowered the IPAP max so it doesn't go above 13 anymore and therefore doesn't make those hideous noises it was making when it hit 25 even when it goes to the max. It also smelled like melted plastic or rubber so badly that it kind of filled the whole room and made me choke/cough every time I put the mask on.

Sleep dr mentioned switching medical supply companies for this rental since no one is even coming to take a look. I have no experience with renting medical equipment. Can anyone that's done this recommend switching or staying? Thanks again.

dogmum wrote: ↑

Tue Jul 10, 2018 8:57 am

Believe it or not, I've been working on this all this time and still it's not completely resolved. My RT is super nice, but despite promising to come out many times, he has still not been out to see me since initial setup in April. I took my machine to sleep dr and she lowered the IPAP max so it doesn't go above 13 anymore and therefore doesn't make those hideous noises it was making when it hit 25 even when it goes to the max. It also smelled like melted plastic or rubber so badly that it kind of filled the whole room and made me choke/cough every time I put the mask on.

Sleep dr mentioned switching medical supply companies for this rental since no one is even coming to take a look. I have no experience with renting medical equipment. Can anyone that's done this recommend switching or staying? Thanks again.

That is not normal and most likely it sounds like the machine needs to be serviced or replaced. The DreamStation should be very quiet and even at 25 cm h2o you should only hear the higher flow of air as expected. I have an old System One AVAPS and it is quiet, so I can only imagine the DreamStation should not be noisier.

It's not too difficult to switch medical suppliers. Since you will still need to use the current machine while you transition, I would contact a preferred supplier approved by your insurance, and tell them that you want to switch from whatever company you use now. They should be able to set you up with the new equipment. Then you can contact the old supplier and tell them you will be returning all equipment to them. Hopefully they will come to pick it up, but you may need to return it to a local branch office (I did when I used Apria DME - they refused to come pick anything up).