BiPap S/T Settings Question

[Nazareth]

Hi all- this thread is similiar to my other one, but a bit different. My S/T machine has settings that I can set myself such as Breathes per Minute, Ipap and Bipap setting- When I got the machine the provier said that the setting (12/8 with BPM of 14 was what was perscribed, and she said that if I needed it changed, I had to go through the doctor, get a perscription for a change in numbers, and then the provider would then issue me a new smart card with the correct settings-

Ok, here's my question- what are the settings buttons on my machine for then? Can't we just set a new setting? Or woulkd it mess up the machine because the smart card has the oringinal settings coded into it?

I tried a BPM setting of 12 instead of the 14 it was originally set at, and the problem I mentioned in my other thread cleared up a bit and I wasn't fighting as bad to keep up with the breathing of the machine. I only tried the new 12 setting for liek 5 minutes, because I wasn't sure I should have been messin with it-?

[dsm]

[quote="Nazareth"]Hi all- this thread is similiar to my other one, but a bit different. My S/T machine has settings that I can set myself such as Breathes per Minute, Ipap and Bipap setting- When I got the machine the provier said that the setting (12/8 with BPM of 14 was what was perscribed, and she said that if I needed it changed, I had to go through the doctor, get a perscription for a change in numbers, and then the provider would then issue me a new smart card with the correct settings-

Ok, here's my question- what are the settings buttons on my machine for then? Can't we just set a new setting? Or woulkd it mess up the machine because the smart card has the oringinal settings coded into it?

I tried a BPM setting of 12 instead of the 14 it was originally set at, and the problem I mentioned in my other thread cleared up a bit and I wasn't fighting as bad to keep up with the breathing of the machine. I only tried the new 12 setting for liek 5 minutes, because I wasn't sure I should have been messin with it-?

[Nazareth]

You don;t think it will mess up the machine or smart card? The provider made it al lsound liek it was a big deal and that I needed a doc to write perscription- then the provider would need to give new smart card- But if that's the case, why would they have the settings buttons available to patient? -

[dsm]

[quote="Nazareth"]You don;t think it will mess up the machine or smart card? The provider made it al lsound liek it was a big deal and that I needed a doc to write perscription- then the provider would need to give new smart card- But if that's the case, why would they have the settings buttons available to patient? -

[Nazareth]

Yeah, I realize it can be a tricky thing where fixing one means another area gets less help- kind of a fien balancing act- I had wondered if lowering the breathign rate might mean an easy breathign while falling asleep, but might mean I'm not getting the right treatment while I'm sleeping when the breathing varies from an awake rate of breath.- It may be just coincidence, but I put the breathing rate down to 12 last night, and woke feeling a bit 'off'- or perhaps groggy might be hte right term- it lasted most of the day- now, I could have just had a bad night with leaks, and 1/2 awake times due leaks or soemthign- but maybe I'll set it back to 14 for a night or two and try again. at 12, see what happens. I just don't want to mess the machine up if it's the smart card that determines what the settings need to be at.

[christinequilts]

Nazareth-

It sounds like you're going to have to find another sleep lab & doctor from what you've told us so far. It sounds like you're living in rural area?- how far is the nearest teaching hospital or even just a 'big city hospital'? I'm in much the same situation, if I went local, I probably would have ended up misdiagnosed or worse with my severe CSA/CSBD/AI/CAP, but since I kept all my doctors in the nearby city I use live & work in, I got lucky & got a wonderful sleep doctor at the second oldest sleep lab in the state- that is also one of the largest sleep labs in the country. Driving an hour one way isn't always fun, especially late at night for a sleep study, but the closer options wouldn't have met my needs.

Where you able to ask your sleep tech what your average breath per minutes was during your studies? One big problem with ST machines is that they are very precise in how they measure BPM (breaths per minute). At 14 BPM, it expects you to breath every 4.3 seconds and that's that. Its a machine, we're not- you can very well breath 14 times in one minute, but it may be that the first 3 are 4 seconds long; that's okay, you're above the goal and in Spontaneous mode. The next 2 breaths might 3.5 seconds long, then 5 at 4.3 exactly. Everything sounds fine so far, right? You've been in Spontaneous mode the entire minute so far, but if you're going to have 14 breaths per minute, something has change with the last couple, doesn't it? We've used 40.5 seconds for 10 breaths, we have 4 breaths left and 19.5 seconds to take them. If the remaining 4 breaths are perfectly even, then you are looking at 4.9 seconds per breath, which is well above the expected 4.3 and will result in your machine kicking into Timed mode to get you back on track, even though you technically did breath 14 times per minute. Can you see why the Backup Rate needs to a little lower then your normal resting/sleeping breathing rate? Otherwise every time the Time mode kicks in when its not needed, you risk the BiPAP ST causing more breathing destabilization then stabilization.

Add in that when you're really having a central apnea, BiPAP ST can't do much until it starts to happen- its a reactive therapy, not preventative like CPAP is for OSA. In my case, BiPAP ST wasn't that successful at triggering me to breath when I had centrals, which is why I was left with such a high residual AHI- and that is pretty typical with significant central apnea. I know that like myself, your CSA is not your only health concern. It sounds like your current sleep doctor has a very limited understanding of CSA, especially when he let you go for over 6 months without treatment because the one DME was being stupid. Did he or anyone else ever suggest trying a different DME when the first one dropped the ball?

You need a doctor who not only understands CSA better, but also understands how it can affect & interact with all your chronic health concerns. I know you mentioned you had surgery to have your pituitary gland removed, which an old college roommate had due to an injury. It was my understanding that if she was unconscious, her body wouldn't produce adrenaline and she had to carry an EpiPen all the time. Now I'm going on memory from <gulp> 15 years ago, but would something similar happen with you in your sleep? Would your body produce any adrenaline in response to any apneas- obstructive or central? You've also mentioned asthma- that plays big into apnea and how its treated. There are some people with what they think is nocturnal asthma that's actually apnea and some people with what looks like apnea that ends up being nocturnal asthma...let alone how asthma on its own can affect breathing overall night to night.

I know life would be easier if each medical problem could exist on its own & not interact with all the others...and we both know a lot of specialist think that's the way our bodies work, as they see only the body part they specialize in-lol. But when it comes to sleep disorders, they most certainly do affect other health problems and vice versa. You mentioned in the other post the sleep tech mentioned seeing 'Fibro-like sleep activity'? He was most likely referring to Alpha Intrusion/Alpha Delta Sleep, which is part of my Dx. Its commonly seen in people with chronic pain of any any origin, including Fibro, but its not limited to Fibro. And yep, I've been through plenty of pressure point test for Fibro, which never show I have it. I do have chronic pain from my knee and am on long term pain meds to treat it, which was probably easier because it was a result of an injury from physical therapy years before that went undiagnosed. I do know that once I started BiPAP ST, I was able to reduce my pain meds significantly (30-40% less) and I've been able to reduce them even further since starting the VPAP Adapt. And that my Pain Management doctor used the fact I had been DXed with Alpha Intrusion as objective proof I was still in pain & needed long term pain management.

I'm usually the last person here to recommend changing settings without a doctors orders, but if you need to adjust your backup rate to be able to use your BiPAP ST, I would do it personally. I also haven't pushed for anyone else to try the Adapt except one person I happened to know from another, unrelated on-line forum. Your doctor & DME screwed around for over 6 months and now they want to continue at that same pace, as if its no big deal. It may be 'no big deal' to them, but its your life. And BTW, the Adapt is billed in the same class as the BiPAP ST, so if you qualify for BiPAP ST under Medicare, then you will qualify for the Adapt, as long as there is medical necessity to switch from one to another. Your DME won't be happy, most likely, but you need to get the right treatment...otherwise they are likely to start telling you that you can't get a different machine for 5 years.

[Nazareth]

Yeah, my nearest 'big city' is about 1 1/2 hour away, and they aren't concidered even a city really-

In my case, BiPAP ST wasn't that successful at triggering me to breath when I had centrals, which is why I was left with such a high residual AHI- and that is pretty typical with significant central apnea.

I don't think the S/T at the settings I'm on now is too succesful at triggering my breathign once the centrals happen- I keep waking up gasping for breath- especially when I'm just dropping off to sleep- 1/2 conscious, but almost asleep, and to be honest, I think being on the machine has made this even worse- at least while I'm drifting off to sleep- not real sure what is going on after I'm asleep- but I do still bolt awake at times, at least times I can remember- (Got a feeling I might even be mostly asleep for some of them, and not remember them when they happen) - however, the sleep lab told me there were no centrals for the 1 and 1/2 hours I eventually got to sleep at the lab. So who knows, maybe the settings are fien once I'm asleep and in sleep breathing patterns.

Did he or anyone else ever suggest trying a different DME when the first one dropped the ball?

Nah- The only other one I know of around us is another DME in the same office building- would be kinda touchy if I switched to the other one, and the sleep lab tech didn't have too much good to say about the other one, said he wasn't impressed by the other docs knowledge- Kinda limitted in my choices unless I drive for 1 1/2 or more.

I do know that once I started BiPAP ST, I was able to reduce my pain meds significantly (30-40% less) and I've been able to reduce them even further since starting the VPAP Adapt. And that my Pain Management doctor used the fact I had been DXed with Alpha Intrusion as objective proof I was still in pain & needed long term pain management.

*I've only been on machine about a week now, and I think I'm starting to see a little improvement in the pain part, but the excersize intolorance is still the same- stil ltakes onyl 3-5 seconds of any type of muscle stress to start the muscle burning/pain- Was really hoping this was going to resolve on the machine- it still may, hopefully it's not somethign like McArdle,s or some Myositis

otherwise they are likely to start telling you that you can't get a different machine for 5 years.

Well, if I don't start improving better in say 5 months, I'm goign to push for another sleep study (this time I'll be able to actually sleep during hte study because I'll be used to the machine by then), and I'm going to try to go to a lab that might have an Adapt SV if I can (I had a talk with the sleep lab tech in hospital near me, and he really wants to get the adapt SV, but doesn't think his Boss will approve one for study- but things may change if he talks them into it or if grantm oney comes in. They get a lot of heart patients there, and the SV is better I guess for peopel with heart problems and sleep apnea. I want another study done anyways, as I think I'm still having the centrals as I'm bolting awake at times gasping. I think things are helping some- but I've been struggling health wise for too long now, and I want to make sure we have at least the right settings- I sure wish they'd given me a machine thaT could tell me wether or not I'm still having hte apneas- and would give me soem data- It's like shooting in the dark here without the data- not sure what's going on.

I'll mess aroudn with hte BPM's a bit- I lowered it to 10 before I dozed off- just to see what it was like, and it was much better rate- but I jumped it up to 12 before I fell asleep just to be on safe side- 12 isn't quite neough, but it's better than the 14 for sure.

[DrowzyDave]

And BTW, the Adapt is billed in the same class as the BiPAP ST, so if you qualify for BiPAP ST under Medicare, then you will qualify for the Adapt, as long as there is medical necessity to switch from one to another.

Christine,

What would be considered "medical necessity'? High AHI? Low oxygen levels on overnight oximitry? My doctor was looking into having another PSG and titration done with the Adapt but after an overnight oximetry study showed that my oxygen levels were pretty good they stopped pursuing it because they were concerned that I would not "qualify". My AHI has been averaging in the 8 to 12 range but I still feel sleepy most mornings and have a hard time making it through the day without an afternoon nap.

Dave

[christinequilts]

I don't think the S/T at the settings I'm on now is too succesful at triggering my breathign once the centrals happen- I keep waking up gasping for breath- especially when I'm just dropping off to sleep- 1/2 conscious, but almost asleep, and to be honest, I think being on the machine has made this even worse- at least while I'm drifting off to sleep- not real sure what is going on after I'm asleep- but I do still bolt awake at times, at least times I can remember-

Part of it is you're aware of the apneas now so you notice them more. They were probably there before, but you blissfully unaware...well, at least well you were asleep or semi-asleep, even if it wasn't blissful sleep. When we fall asleep, we have what are termed 'sleep onset centrals', which are a perfectly normal occurrence that happen to even healthy people with no apnea too. But for those of who have significant centrals, we can get stuck in the loop- start to drift off into Stage I sleep, have a central, wake up, drift off into Stage I sleep, have a central, wake up, etc. If it happens once or twice, no big deal, especially if you don't panic, but if you're stuck in the repeating loop for some amount of time, its a problem. When they had me do a split night PSG last fall, I got stuck big time, and spent an hour go back & forth between awake & stage I sleep before I finally made it to stage II. The really sad thing, none of the centrals counted under Medicare scoring because I wasn't asleep long enough-lol. That is were a doctor like yours could look at a report and say 'tada, everything is fine, there's no evidence of centrals'. My doctor did call them central hypopneas in the written part of the report, along with noting 'sleep was difficult to score' & 'AHI significantly under estimates the severity of sleep disordered breathing'. What's even sadder, is I thought I was actually asleep some of the time in that first hour- that's how twisted our perception of 'sleep' can get after years of this.

(Got a feeling I might even be mostly asleep for some of them, and not remember them when they happen) - however, the sleep lab told me there were no centrals for the 1 and 1/2 hours I eventually got to sleep at the lab. So who knows, maybe the settings are fien once I'm asleep and in sleep breathing patterns.

What stages of sleep were you in during that 1 1/2 hours? Did you REM rebound and spend most of that time in REM, which isn't unheard of during titrations? Centrals are not commonly seen during REM, where Obstructives are- so you can see how the tech has to be thinking very differently when titrating for CSA vs OSA. Was that at your final prescribed pressure & was the backup rate of 14 used for the entire time?

I know with my centrals, I never woke up in a panic, like you hear so often with obstructives. After I got my BiPAP ST, I would occasionally wake up and start going through the checklist of 'why the heck am I awake at 3am'...don't have use the bathroom, no phone ringing, no dog barking, no thunder storm, no cats wrestling on my bed, no fire alarm, etc....you get the picture. All well this is going on, I assumed I was breathing because I heard the BiPAP ST cycling, but eventually it hits me that yeah, its doing its thing, but it can cycle & spin its wheels all it wants, it does no good if I don't take the hint & BREATH! I don't even want to think how long those apneas were before I woke up, but I know several breath cycles would go by before I got to 'am I breathing?' on my checklist of reasons why I could be awake-lol. And then I would take a few fairly normal breaths- no gasping or anything, and fall back to sleep. It was always such a calm experience that it was surreal.

*I've only been on machine about a week now, and I think I'm starting to see a little improvement in the pain part, but the excersize intolorance is still the same- stil ltakes onyl 3-5 seconds of any type of muscle stress to start the muscle burning/pain- Was really hoping this was going to resolve on the machine- it still may, hopefully it's not somethign like McArdle,s or some Myositis

Let's hope its still lack of restorative sleep and nothing else. When I think back to how I felt before BiPAP ST almost 4 years ago, I really don't think I could have survived much longer. I was on a major downward spiral, where doing anything had to be careful considered and I was for all practical purposes, homebound. A single doctors visit would mean I would be recovering for several days, but of course they don't see that because you naturally learn to not schedule appointments on consecutive days. In the first weeks, I saw some major changes, even though my backup rate was set too low (and now you know the rest of the story...the RT used 7 as my backup rate when she set up my machine, which was my EPAP #-lol...of course I didn't know any of this then). As the weeks & months went by, I kept seeing changes & improvements, but they got smaller over time. I'd say I peaked around 7-8 months after going on BiPAP ST, then I platued for awhile before slowly getting worse, which was a combination of lack of control of my CSA & some other health issues that tend to make my centrals worse getting out of control.

There is definitely a part of the equation that 'getting better', but it has to balanced with how the BiPAP ST may be negatively affecting your sleep, especially if your backup rate is too high like we think it may be. Then you add in even improvement overall from the BiPAP ST can upset the apple cart, so to speak, when it comes to other chronic health problems. I know for me, as my sleep has improved, I've had to relearn my limits in other areas that never came into play before because I never had enough energy to find out what they were. And then if you do have significant improvement in any aspect of you health, you reach a point were you have to start reevaluating how any of your other conditions are being treated- it may be that side effect that didn't matter does now or that there are more options available to you now.

Well, if I don't start improving better in say 5 months, I'm goign to push for another sleep study (this time I'll be able to actually sleep during hte study because I'll be used to the machine by then), and I'm going to try to go to a lab that might have an Adapt SV if I can (I had a talk with the sleep lab tech in hospital near me, and he really wants to get the adapt SV, but doesn't think his Boss will approve one for study- but things may change if he talks them into it or if grantm oney comes in.

I bet if they do any amount of business with ResMed, that ResMed would loan them one for the study- as a test drive, so to speak. And they usually send their rep to help with the first study or so too. If ResMed can convince the local sleep doctors to at least consider the Adapt, think about the $$$$$ they can make in the long run? Going back to my early BiPAP ST days, when I finally got my machine through my regular DME covered by Medicare, it was a VPAP II STA. Unfortunately, me & VPAP II STA don't get along- no matter how we adjusted them (2- the first one died with 12 hours total use), I felt the same as if I slept without a BiPAP. I had my very own Respironics BiPAP STD that I had acquired very reasonably when I wasn't sure I could qualify because of the O2 desat requirement that was in effect back then. I had a family member randomly either switch me to the VPAP II STA or leave on the BiPAP STD after I fell asleep, switching me back in the morning before I woke up fully. We went as far as keeping a towel hanging in front of them so I couldn't see which one was hooked up and I could tell within a minute of waking up which machine I spent the majority of the night on without fail. My DME, the sleep lab DME, my sleep doctor & the sales reps from both Respironics & ResMed got involved, and in the end, it was decided the best option was for me to try a Respironics Synchrony BiPAP ST for a month to see how I did since it should be the most similar to the BiPAP STD I had. So to make things happen faster, the Respironics sales rep lent my DME his personal demo Synchrony, which was suppose to be for one month then my DME would order one if it worked. In the end, they worked it out that I kept that machine- it only had something like 10 hours on it, so it hadn't been demo'd all that much, but it made it a lot easier. The sales rep knew it was a chance for him to show my DME his machine was superior to the ones they normally used, and since then, they have added a lot more Respironics xPAP stuff to their inventory.

Back to your follow up with your sleep doctor, did he have you schedule an appointment to monitor how you are doing on BiPAP ST now? He's not leaving you to figure it out on your own, is he? My Mom was DXed with OSA by my sleep doctor a couple months after I was DXed with CSA, and I definitely had a more stringent follow up appointment protocol because of the CSA/BiPAP ST. I think after I started BiPAP ST, I had follow up appt at 1 month, 2 months, 3 months, 6 months, etc. And in between appointments, there were plenty of phone calls back & forth too. Mom was seen at 1 month post, then 6 months & now once per year, whereas I'm still seen every 6 months at a minimum. Even after I switched to the Adapt, I was seen 1 week after starting, 1 month, 2 month & then I'm scheduled to be seen again at 8 months later this summer. I didn't have a second titration until after 1 1/2-2 years on BiPAP ST, but my DME & the Respironics sales rep did download the data from Synchrony a few months in (which is when we changed my backup rate to 10), and then I purchased my own software, with my doctors blessing. If there had been another option for treatment, I would have had my second titration sooner, but 2+ years ago, there really wasn't any options sort of using a trach with a full ventilator for severe, treatment resistant CSA. If I was in your shoes, I would make sure your doctor can't forget about you- schedule regular follow up visits to let him know how things are going and to make sure both of you have the same goal in mind.

I sure wish they'd given me a machine that could tell me whether or not I'm still having the apneas- and would give me some data- It's like shooting in the dark here without the data- not sure what's going on.

Your machine does report some data in Encore Pro, but it uses a smartcard. Does your DME have the ability to download the data & print it out?- and if they do, make sure they do a full report, not just compliance. DSM might be able to help some as to what version of Encore you need for your machine. I don't know if my version would be current enough for your machine or not...but its not like I'm going to be using any more, but then you would have to get a card reader too (which are still available, I think). My Synchrony used a direct cable hookup, so I never got a card reader....but it also maintained 6 months full nightly data in the machine, unlike the 6-7 days the SmartCards keep, so the cable hookup wasn't that much of a inconvenience. BiPAP ST don't report data the same as CPAP- you may not get an AHI & snores usually are not reported, but you would have % of patient triggered breaths, which tells us how often your in charge vs Timed mode kicking in, along with other respiratory measures, like Tidal Volume (VT), Minute Ventilation (MV), Breaths per Minute (BPM), etc. Alternatively, there are some kindly board members who will download your SmartCard for you & provide you with the full reports too.

I'll mess around with the BPM's a bit- I lowered it to 10 before I dozed off- just to see what it was like, and it was much better rate- but I jumped it up to 12 before I fell asleep just to be on safe side- 12 isn't quite enough, but it's better than the 14 for sure.

My gut feeling would be to start with 12 and see how you do. I know my backup rate of 10 was considered on the lower end, 12 is the most common number I've seen over the years. There was only one guy who actually did breath pretty rapidly who used a backup rate of 14- but his resting rate was 16-18.

[Nazareth]

Let's hope its still lack of restorative sleep and nothing else. When I think back to how I felt before BiPAP ST almost 4 years ago, I really don't think I could have survived much longer. I was on a major downward spiral, where doing anything had to be careful considered and I was for all practical purposes, homebound. A single doctors visit would mean I would be recovering for several days, but of course they don't see that because you naturally learn to not schedule appointments on consecutive days.

That's exactly where I'm at and you described it perfectly- it would take a toll on me just running to the docs where I'd have to recoup for days, and liek you say, docs never see this part- as I'm stuck in house, too ill to go out and do anything.

I had 9 rem moments during that 1 1/12 hour sleep- it doesn't say how much time was spent in rem though.

And then if you do have significant improvement in any aspect of you health, you reach a point were you have to start reevaluating how any of your other conditions are being treated- it may be that side effect that didn't matter does now or that there are more options available to you now.

Yeah- it's all a balancing act for sure- My main problem is the excersize intollorance that causes the muscle burning/pain- that has been what has disabled me the most- I can deal with everythign else- but there just is no dealing with this muscle problem- it stops ya cold.

Back to your follow up with your sleep doctor, did he have you schedule an appointment to monitor how you are doing on BiPAP ST now? He's not leaving you to figure it out on your own, is he?

Apparently he is- haven't heard anything abotu another sleep study from the doc- The sleep tech wants to do another one- but he has no real say in the matter. I suppsoe I could push for another one, but I'd like to give it a couple months to see what happens first though- then go and evaluate if the apneas are stopping enough for good health.

I think after I started BiPAP ST, I had follow up appt at 1 month, 2 months, 3 months, 6 months, etc

Lol- that's what I was suppsoed to have after I got the pituitary tumor taken out- I had to almost beg to be seen after 4 months went by with no follow-up call from docs asking me to come in to be evaluated- then another 4 months went by- no calls- I was suppsoed ot have MRI's every 6 months- haven't had one in over a year and half- I just give up fighting with docs- with the sleep apnea going on, it just really wore on me- I keep hearing about all these people aroiund me praising how good their docs are, and how thorough- Ugggh- I just wanna scream soimetimes- I think a long lost relative somewhere musta walked under a ladder, slipped, stepped on a blakc cat's tail, and fell into a mirror and broke it. I still have to go get the MRI done and hormones checked- because this particular type tumor often comes back 60% of the time, and rapidly if it does too, ubt I really gotta get feeling better first-.

Yeah, I'm gonna continue on the 12 BPM's fdor now- just see what happens- As for the data, I'd be too exhausted to sit down and figure out percentages and whatnot- math was never my strong point really anyways. I guess I can do without the data, and just see how thigns develop over a few months- Woulda been nice to easily see apneas, snores etc with just a quick glance liek some machines do I guess.