It's Been A While - Trying To Figure Out A Plan

I'm going to put my questions at the top for those people who prefer expediency. The conditions that caused them are below the questions.

1 - So my current SD Card for my current machine is bad. I just talked to the guy from the store I got the machine from and he said my 30 day AHI is 2.4 and my 7 day is 2.0 so he is sure I have the right settings.
2 - I found out I've had this machine so long I qualify for a new one. He told me I could get any ResMart Luna BiPAP machines (those are the ones with the reports you can put an app on your phone for). Is there a good link for forum reviews (especially for masks for that model)? For some reason when I search I never get anything of value.
3 - Do the new machines HAVE to be plugged directly into a wall socket still? I'd prefer mine be plugged into my UPS as Florida in summer frequently loses power and I wake up because my nose is covered and no air is being pumped into my mask.

Many thanks for anyone who can help.

When I first joined the forum in 2012 I had just gotten a bi-pap machine and read all the information for the time. I've had CFS/Fibro since 1995 so I've pretty much been in unrelenting pain and brain fog to the point where I wasn't able to be all that interactive with my health. I found CBD Hemp Oil last October and my world completely changed. Now I'm actually TRYING to figure things out. I still have and faithfully use my Phillips Respironics BiPAP Pro Bi-Flex machine (which was a used item when I got it). I, however, have no idea how to get the information off the card, nor do I have any idea how to read it. (I still have some brain fog issues).

I bought a FitBit Charge 2 tracker and have been losing weight. Some of the sleep information has slapped me in the face though. In the beginning when I went to my pulmonary doctor he was one of those "you've got 5 minutes" guys and was basically disgusted because I didn't sleep more hours and was overweight. Completely disregarded the amount of pain I was dealing with and I distinctly got the feeling he thought CFS/Fibro was a fake disease. My machine was working great so I stopped going to him because I felt the $45 I had to spend on a co-pay wasn't worth going in and being told I was a horrible person. He wasn't relaying any useful information about my card data to me.

I started noticing last August my machine wasn't being as effective as it used to be. I was still pretty brain fogged and didn't feel like trying to fight with the doctor so I just ignored it. When I got my FitBit back in December, however, I started noticing that getting exercise and losing weight wasn't helping at all. As a matter of fact, I can't get my mask to fit right on my face anymore (it's one that covers my nose, not my mouth) and it leaves dark marks on my face like it was pressing too hard on it, yet if I don't have it that tight the air escapes. I got a new mask thinking that was the problem, but it didn't help.

First of all I would nix the ResMart Luna BiPap. It's a cheap Chinese knockoff of a ResMed machine. ResMed is currently in litigation with those people.
I have no idea what data it will offer via whatever app they have but it won't be detailed like we can get with regular software.

Make the DME/equipment supplier stick with either ResMed or Respironics bilevel...better machines, better software and better information on the LCD screen even.

You can use your UPS power source with the newer machine...no need for plugging directly into the wall socket.

You have a 50 series PR S1 machine showing in your equipment profile.
I suspect you have a PR System One BiPap Pro model 650 machine. Please confirm...is it this machine?
https://www.cpap.com/productpage/respir ... iflex.html

If your current SD card is bad...you can go to WalMart and get a cheap generic SD card and it will work just fine with your machine. Doesn't have to be name brand.
There is current available software that you could use to see the data the machine puts on that SD card.
https://sleep.tnet.com/equipment SleepyHead works just fine with your machine.

EncoreAnywhere is Respironics software...we can't get that software but we don't need it. SleepyHead will show everything (and more) that the EncoreAnywhere shows.

vze2363v wrote: I just talked to the guy from the store I got the machine from and he said my 30 day AHI is 2.4 and my 7 day is 2.0 so he is sure I have the right settings.

Well...probably the settings are okay but you might have some clustering of events or times in big leak which might be impacting the therapy.
Need to use the software to see for sure.

You can use any mask with any machine...so don't worry about that.

Some questions for you.
How many hours of sleep are you getting? Real sleep and not necessarily time in bed.
Are those hours of real sleep fragmented with a lot of wake ups? If so, any idea why and approx how many?
What meds do you take?
What specific symptoms seem to have worsened for you to think that your OSA isn't being well treated or the machine isn't as effective? Is it brain fog or excessive sleepiness or fatigue????
How is the Fibro or other health issues going on? What do you do for the pain?

Don't be afraid to use SleepyHead. It really isn't all that complicated and all you need to understand is the basics...AHI, and leak.
See if this helps understanding how to install and use SH.
http://www.apneaboard.com/wiki/index.ph ... d#pid73182

Finally do you know how to get the information that is available on the LCD screen of your machine? It's limited to AHI and total leak numbers but it is a starting point.

vze2363v wrote:I'm going to put my questions at the top for those people who prefer expediency. The conditions that caused them are below the questions.

1 - So my current SD Card for my current machine is bad. I just talked to the guy from the store I got the machine from and he said my 30 day AHI is 2.4 and my 7 day is 2.0 so he is sure I have the right settings.
2 - I found out I've had this machine so long I qualify for a new one. He told me I could get any ResMart Luna BiPAP machines (those are the ones with the reports you can put an app on your phone for). Is there a good link for forum reviews (especially for masks for that model)? For some reason when I search I never get anything of value.
3 - Do the new machines HAVE to be plugged directly into a wall socket still? I'd prefer mine be plugged into my UPS as Florida in summer frequently loses power and I wake up because my nose is covered and no air is being pumped into my mask.

Many thanks for anyone who can help.

When I first joined the forum in 2012 I had just gotten a bi-pap machine and read all the information for the time. I've had CFS/Fibro since 1995 so I've pretty much been in unrelenting pain and brain fog to the point where I wasn't able to be all that interactive with my health. I found CBD Hemp Oil last October and my world completely changed. Now I'm actually TRYING to figure things out. I still have and faithfully use my Phillips Respironics BiPAP Pro Bi-Flex machine (which was a used item when I got it). I, however, have no idea how to get the information off the card, nor do I have any idea how to read it. (I still have some brain fog issues).

I bought a FitBit Charge 2 tracker and have been losing weight. Some of the sleep information has slapped me in the face though. In the beginning when I went to my pulmonary doctor he was one of those "you've got 5 minutes" guys and was basically disgusted because I didn't sleep more hours and was overweight. Completely disregarded the amount of pain I was dealing with and I distinctly got the feeling he thought CFS/Fibro was a fake disease. My machine was working great so I stopped going to him because I felt the $45 I had to spend on a co-pay wasn't worth going in and being told I was a horrible person. He wasn't relaying any useful information about my card data to me.

I started noticing last August my machine wasn't being as effective as it used to be. I was still pretty brain fogged and didn't feel like trying to fight with the doctor so I just ignored it. When I got my FitBit back in December, however, I started noticing that getting exercise and losing weight wasn't helping at all. As a matter of fact, I can't get my mask to fit right on my face anymore (it's one that covers my nose, not my mouth) and it leaves dark marks on my face like it was pressing too hard on it, yet if I don't have it that tight the air escapes. I got a new mask thinking that was the problem, but it didn't help.

I notced the mask that you are using...If you need a new one, check this out...
https://www.cpap.com/productpage/comfor ... onics.html

Pugsy wrote:First of all I would nix the ResMart Luna BiPap. It's a cheap Chinese knockoff of a ResMed machine. ResMed is currently in litigation with those people. I have no idea what data it will offer via whatever app they have but it won't be detailed like we can get with regular software.

Make the DME/equipment supplier stick with either ResMed or Respironics bilevel...better machines, better software and better information on the LCD screen even.

I don't get a choice unfortunately. I live in a Competitive Bidding Program Area and Medicare will only pay for the machines set forth by the winning bid. Apparently the winning bid was ResMart (https://www.medicare.gov/what-medicare- ... lapse-4769 - Tampa-St. Petersburg-Clearwater, FL). I have to lease the machine for 13 months and then it's mine. As I'm on disability, I wouldn't be able to afford one of the other two brands. I have my son's college PLUS loans on my credit report so there's no trying to finance it on my own unless someone knows of a grant somewhere I can apply for.

Pugsy wrote:You can use your UPS power source with the newer machine...no need for plugging directly into the wall socket.

Thank God. Very glad to hear it!

Pugsy wrote:You have a 50 series PR S1 machine showing in your equipment profile.
I suspect you have a PR System One BiPap Pro model 650 machine. Please confirm...is it this machine?
https://www.cpap.com/productpage/respir ... iflex.html

That is indeed my machine.

Pugsy wrote:If your current SD card is bad...you can go to WalMart and get a cheap generic SD card and it will work just fine with your machine. Doesn't have to be name brand. There is current available software that you could use to see the data the machine puts on that SD card.
https://sleep.tnet.com/equipment SleepyHead works just fine with your machine.

Honestly, I don't know that the card is the problem (other then the two times the BiPap machine told me the cards weren't any good any more, which it hasn't with this one). When I bought my new PC, it didn't come with a card reading slot. All I have is the Lexmark USB adapter and out of all the SD cards I have in the house it won't recognize any of them. I'll see if I can find some other USB to SD Card reader somewhere that has better updated software to run it when I get paid in February.

Pugsy wrote:Well...probably the settings are okay but you might have some clustering of events or times in big leak which might be impacting the therapy. Need to use the software to see for sure.

I am concerned about that which is why I was thinking of updating my equipment, but if Luna is that bad maybe I should work harder to solve the importing the SD Card issue instead of getting a new machine.

Pugsy wrote:Some questions for you. How many hours of sleep are you getting? Real sleep and not necessarily time in bed.
Are those hours of real sleep fragmented with a lot of wake ups? If so, any idea why and approx how many?

Seems to run about 3-4 hours of sleep per night. If I'm really lucky, I'll get 6 hours. I don't sleep well due to pain. My sleep cycle is completely screwed up. It seems like my body is on a 30-36 hours/day cycle. It's constantly spinning around. I also have insomnia because of the CFS/Fibro. I've been trying to make sure I get ready for bed an hour before I feel like I'd be able to fall asleep. If I try to force myself to stick to a specific time of night to go to bed, I start getting really anxious and wind up having a panic attack instead of sleeping.

Also, keep in mind I sleep on a couch. The bed I have in my apartment hurts my back really bad. I started sleeping on the couch because it was able to keep my body at an incline, which is important because I have swallowing problems. That and it didn't hurt my back as much (but it's starting to now). As with most things in my life, I can't afford the type of mattress I really should have to support my back so I can sleep straight through. I know I'm waking up several times during the night. Not only do I remember trying to get comfortable and fall back asleep again, but those times show up on my FitBit tracker.

Pugsy wrote:What meds do you take?

CBD Hemp Oil (No THC) - both drops (foundational pain control every 3 hours) and vape (for pain the drops don't take care of). I am so sensitive to any pharmaceutical drugs there are very few I can take without getting hives and welts. Something they put in the capsules or what they bind the compounds with - my body doesn't like it.

Pugsy wrote:What specific symptoms seem to have worsened for you to think that your OSA isn't being well treated or the machine isn't as effective? Is it brain fog or excessive sleepiness or fatigue????

Mostly how hard it is to breathe once I put the mask on, although I have found if I vape right before I go to bed it will open up my sinuses. The brain fog, the tiredness - I expected it to go away once I was active and had lost some weight. I think the brain fog upsets me more as I am by myself and there is no one to care for me. I have to be able to take care of the things that need to be taken care of.

Pugsy wrote:How is the Fibro or other health issues going on? What do you do for the pain?

The only thing that helps the pain is the CBD Hemp Oil (I use a reputable brand). My fibro pain used to be an 8/9 out of 10. With the CBD Oil it's down to 7 out of 10 and I can actually feel other pains in my body now which is a GOOD thing. The brain fog has decreased enough for me to get proactive about my health, which I couldn't do before. Other than the insomnia and not being able to sleep more than 4 hours even when I've exercised every hour of the day I just started working with a chiropractor to straighten my back out (it's become bent and I'm sure having to use a crutch is part of the problem). I have the beginning of some osteoarthritis in one foot and my knees are kinda toast. The CBD Oil has also helped with my anxiety issues. I haven't had to take a Xanax since I started using the oil last October. I have been fighting off viruses for the last two weeks though. If they find out the thing I'm dealing with right now isn't a virus, I may have to go on antibiotics. The 3 to 4 hours of sleep thing and the insomnia thing have been going on for several months though, so I wouldn't think the virus would be causing it.

Pugsy wrote:Don't be afraid to use SleepyHead. It really isn't all that complicated and all you need to understand is the basics...AHI, and leak.
See if this helps understanding how to install and use SH.
http://www.apneaboard.com/wiki/index.ph ... d#pid73182

Once I figure out the SD Card issue, I hope to be able to read my info.

Pugsy wrote:Finally do you know how to get the information that is available on the LCD screen of your machine? It's limited to AHI and total leak numbers but it is a starting point.

Large leak is 7 day average - 1%, 30 day average - 0%. Periodic Breathing is also at 0% for both 7 Day and 30 Day average. Not sure what periodic breathing means in the bigger picture. Should I try to loosen up my mask and see if it spawns a large leak notice? It would be nice to take my mask off and not see that dark red line on my face where it dug into it. And yes; those are the things it will let me see from the info screen.

Pugsy, thank you very much for all the information in your reply. I greatly appreciate it. If I could think of a reason to tell Medicare I need an exception on my bi-pap machine, I'd try and get it. They won't give me a different brand just because the quality sucks - the Luna model would have to cause an actual medical problem before they'd consent to paying for a different brand. I will update this post when I'm able to pull my information off an SD card.

LSAT wrote:I notced the mask that you are using...If you need a new one, check this out...
https://www.cpap.com/productpage/comfor ... onics.html

Thanks for the link LSAT!

ResSmart didn't win the bidding the DME won the bidding and is deciding to use the cheap knock off in an effort to save money.
The DME has the choice to use any brand they want...they just want to use the cheapest. Medicare doesn't dictate machine brand...that's the DMEs choice.

You haven't accepted the machine yet??? If you haven't...don't. Let's see if we can find someplace that works with Medicare that you can use that will supply a decent machine. Tell them (the DME who is supplying the equipment) that if they won't supply the ResMed or Respironics bilevel you want then they can keep the ResSmart and you will take your business elsewhere.

Do you have a Medicare Supplement? Or are you paying the 20% co pay out of your pocket?

Send me a private message with your zip code...let me see what I can find out about other suppliers available to you. There are online suppliers who also meet the competitive bidding requirements and you can use one of them. I need the zip code to do some digging as to who might be available for you. I don't need any other personal information and I don't want any.
Do include the name of the DME/equipment provider you are working with so I know who they are and can scratch them off the list of possibilities.

About your SD card...do you know how to compress the SD card so the contents can be emailed to someone...which would be me and let me see what data is on it using my software.

Will save you from having to mess with SH right now and all I want is to get an idea what might be going on in terms of your therapy right now.

If you are having trouble breathing when you start the night...what are your settings?
Can you describe it in more detail? Air movement lacking? Suffocation feeling? ETC.

vze2363v wrote: As I'm on disability, I wouldn't be able to afford one of the other two brands. . .there's no trying to finance it on my own unless someone knows of a grant somewhere I can apply for.

Do you know about this program for CPAP assistance from the American Sleep Apnea Association?
https://www.sleepapnea.org/community/cp ... p-machine/

It might be something to explore that could help.

Jean

Pugsy wrote:About your SD card...do you know how to compress the SD card so the contents can be emailed to someone...which would be me and let me see what data is on it using my software.

With Winzip? I still have to find a way to get the information off the card first and it's likely there is none there as the BiPap machine reported that the card has 99% free space on it. I don't even know if the SD card is functioning right now as the respiratory guy from the company I have to use said the machine's ROM will hold six months worth of data on it's own. BTW, I've sent you a private message with the other information.

Pugsy wrote:If you are having trouble breathing when you start the night...what are your settings?
Can you describe it in more detail? Air movement lacking? Suffocation feeling? ETC.

It is all sinus related. I'll vape some CBD Oil if they are inflamed and it usually opens them up. However, I have gone to sleep with them not inflamed and have woken up in the middle of my sleep cycle not being able to breathe because my sinuses have become so inflamed there is no room for the air to get in through my nose so I feel like I'm suffocating even though my mouth is not covered by the mask. I"m assuming it's because I had a central event and my nose was so swollen there was no way for the machine to provide the needed air to me so I had to wake up and breathe in deeply with my mouth. I have also woken up to the sound of my UPS beeper signaling the electricity is off from a storm and feeling like I'm suffocating because I have to be directly plugged into a wall socket. It's mostly a feeling of suffocation, but always feels like it occurs because my sinuses are too swollen or something is obstructing the air flow through my nose.

Sometimes I worry that not enough CO2 is being expelled, but I'm sure that's more of a mental thing as when I put my hand over the exit holes I can feel the stream of air heartily coming out. My settings bounce between 9E and 12.0E?

Soothest Sleep wrote:Do you know about this program for CPAP assistance from the American Sleep Apnea Association?
https://www.sleepapnea.org/community/cp ... p-machine/

It might be something to explore that could help.

Jean - Thank you SO much for the link! I will definitely look into that if we can't get my insurance to cover what I need to have.

Sinus related ...Hmmmm....this is new? I wonder if your humidifier has decided to crap out. It's a known problem with the 50 series and really isn't in the humidifier but instead in the blower and some electronic circuitry in the blower that tells the humidifier what to do.

Does it use much water during the night?

You don't have to get the data off the card...you just zip the entire card and send it to me and I unzip it and put it on a SD card and then use the available software. Then I can see if the machine has stopped writing to the SD card or not.
Your machine stores a good bit of data in its internal memory though so if you put a new SD card in the slot if it will write to the new card we won't be losing much....that's assuming it will still write to the card and while the writing to the SD card part of the machine can fail...it's relatively rare.

Pugsy wrote:Sinus related ...Hmmmm....this is new? I wonder if your humidifier has decided to crap out. It's a known problem with the 50 series and really isn't in the humidifier but instead in the blower and some electronic circuitry in the blower that tells the humidifier what to do.

Does it use much water during the night?

I find this interesting. I have noticed that some nights my mouth is so dry it feels like parts in my mouth are stuck together until I get water in them. The heater part of the humidifier is working though because some of the water has evaporated, but that would make sense as to the inconsistency of that happening (being woken up 3 times after falling asleep to a desert dry mouth, but the rest of the night it not being dry).

Pugsy wrote:You don't have to get the data off the card...you just zip the entire card and send it to me and I unzip it and put it on a SD card and then use the available software. Then I can see if the machine has stopped writing to the SD card or not.
Your machine stores a good bit of data in its internal memory though so if you put a new SD card in the slot if it will write to the new card we won't be losing much....that's assuming it will still write to the card and while the writing to the SD card part of the machine can fail...it's relatively rare.

I will look for a solution to this problem. I just have to find something that can communicate with my computer. The percentage on the SD card is the same after sleeping.

Is Compliance VIC anything? It says check code A5. I don't know if that is normal. I'll let you know as soon as I find something that will read my SD cards.

VIC coding is just for compliance hours of use....useless for what we want.

Can you confirm who/what is telling you the SD card is bad? Is it the BiPap telling you that or your computer?

What setting are you using on the humidifier for humidity to be delivered? I wonder if maybe if we change the setting it will help with the congestion.
I need to know what you are currently using first though.
If water is being used...it's working but maybe we need to adjust the amount of moisture being delivered.

Pugsy wrote:VIC coding is just for compliance hours of use....useless for what we want.

Can you confirm who/what is telling you the SD card is bad? Is it the BiPap telling you that or your computer?

The computer. Hopefully I'll be able to go out later today and see what the Walmart has for an SD card/USB converter.

Pugsy wrote:What setting are you using on the humidifier for humidity to be delivered? I wonder if maybe if we change the setting it will help with the congestion. I need to know what you are currently using first though. If water is being used...it's working but maybe we need to adjust the amount of moisture being delivered.

I'm only using it at "1". I find more than that and it gets too hot and humid.

BTW, I'm trying to look up Luna models and I for the life of me cannot find a bipap model. Is this true or am I still "search" challenged? If Luna does not have BiPAP capability, I'm pretty sure I can fight my way into a different brand BiPAP machine. If this is so, which new model is best to get that comes with it's own app and are you familiar with the Philips Dreamstation Bi-PAP Pro and Auto Bi-PAP machines? Any idea which one of those is better for someone with central sleep apnea? My regular doctor will have to order the machine. Thanks.

If you are only using a setting of 1 on the humidifier for a PR S1 50 series machine... that's very minimal added moisture. Next to none really.
Google "cpap rhinitis".
It might be that the air is more recently drier in your home and the nasal mucosa are dried out and often they will react by swelling and causing nasal congestion.
You might want cooler drier but your nasal mucosa may not. They might want more moisture.

They make a bi level

http://3bproducts.com/?devices=resmart- ... o-bi-level

I agree, get a known brand. The major brands are Respironics and ResMed (the "real" ResMed , that is). There are also other brands such as Fisher and Paykel. I used an F&P CPAP from 1999 until 2008.

I also had the AEIO Med Everest CPAP in 2009. Although the machine lasted as long as one would expect without issues, the company went out of business (because of a fire in their factory), so I would not be able to get replacement water tanks, replacement filters, or anything else from them. For this reason alone, I would advise against the "knock off" CPAP. Imagine that it's just fine, but they loose in court because of trademark infringement. It might become impossible to get parts or filters!