Oxygen Concentrator changed everything!

[methodicalfool]

Hello Everyone!


Here's the executive summary of my post:

• I got a CPAP machine and it helped a little.  The average number of events went down a lot but I was still pretty tired and my oxygen levels still looked bad.
  
• I connected an Oxygen Concentrator to my CPAP machine and my world changed.  The average number of events dropped dramatically and my oxygen level was fantastic.
  
• Now I'm trying to figure out what happened and whether or not my results are typical.
  

Now the full post:

I was recently diagnosed with severe sleep apnea (55 - 70 events per hour during my sleep studies).  Since age 15 I felt tired all the time and had to take a nap or two every day just to function.  My doctor prescribed a CPAP machine and that seemed to help a little but I was still having to take a nap almost every day.  The CPAP machine brought me down to an average of 26 events per hour but my results were all over the place--one night I still reached 74 events per hour!  And, yes, that was on the CPAP machine.  I bought a pulse oximeter and discovered that even with my CPAP machine I was spending a significant amount of time under the 88% oxygen level.  By significant, I mean 15 - 90 minutes per night and 42 minutes on average per night.

So I wondered what would happen if I added an Oxygen Concentrator to the mix.  I heard that an Oxygen Concentrator would keep my oxygen level at 95% all night long.  I didn't believe it but decided I could return it if it didn't help.  To my surprise, the results have been absolutely crazy--and life changing.  At this point I'm trying to make sense of what happened.  My oxygen level really did stay at 95% the whole night.  But what surprised me more was that I went from having an average of 26 events per hour down to an average of 3.4 per hour.

Here's a graph from SleepyHead that shows how my AHI dropped to a consistent 'low' when I started using the Oxygen Concentrator (on July 21st):



And here's a before/after snapshot of a single night from SleepyHead (downloaded from my CPAP SD card):

CPAP:




CPAP + Oxygen Concentrator:



And here's my pulse oximeter before/after results:


CPAP:

CPAP + Oxygen Concentrator:

Suddenly, I don't need any naps and I feel amazing!  However, I'm baffled as to why adding an oxygen concentrator would result in fewer events.  I have one theory--maybe the Oxygen Concentrator increased the overall pressure and my CPAP machine didn't notice.  I've got the Resmed AirSense 10 AutoSet, which adjusts the air pressure with each breath--but the amount of pressure it's applying didn't really seem to change after adding in the Oxygen Concentrator.  So I'm wondering if perhaps the overall pressure is higher and that's helping eliminate the obstruction.

I'm posting this here because my sleep doctor dismissed the idea of adding oxygen.  So I showed my pulse oximeter reports to another doctor and they agreed that I needed oxygen and they wrote me a prescription on the spot... but they aren't a sleep doctor so I didn't get much information from them.  Now I'm trying to help some fellow CPAP user friends and relatives determine whether adding oxygen would produce the same results.

Any thoughts?  Are these results typical?  And any ideas why the number of events was so drastically reduced?

Thanks!

Jeremy

[DeepBreathing]

G'day Jeremy. Congratulations on this huge turn-around.

I don't pretend to understand why adding oxygen would eliminate obstructive apneas in the way it has, but I can't argue with the results. One thing which really stands out in your "before" results is the very high rate of central apnea (clear airway). These are different in nature from obstructive apnea, and occur when the "breath now" signal is either not generated in your brain or not received by your breathing muscles. Central apnea can be idiopathic / endogenous or else pressure induced. Many people get a few pressure-induced centrals when they start on cpap therapy but they usually go away after a while. However the number your charts are showing suggests they might be endogenous.

It would be very interesting to know if the centrals showed up in your original sleep study. If so your doctor should have set you on a path to an adaptive servo ventilator (ASV), which is a machine specifically designed to treat central apnea.

Anyhow, the oxygen seems to have done the trick!

[Sleeprider]

Your poor results early in treatment were mainly due to central apnea, although some obstructive is clearly present. Your settings at 6-12 cm with EPR at 3 resulted in a rapid increase of pressure when the initial OA was detected. As soon as pressure went over 10 cm you were in an unbreakable cycle of CA and OA. If you had posted this to the forum, my recommendation would have been to reduce maximum pressure to 8.5 and reduce EPR to 1. That should have both reduced OA and prevented the APAP from rising to a pressure where you clearly have abundant CA. The use of EPR also significantly affects CA in individuals like you. The SpO2 results were the consequence of a high rate of complex apneas that mostly arose in response to the pressure settings of your machine, and whatever else seems to trigger complex apnea. The addition of oxygen may have helped to prevent the apnea, or you may simply have adapted to the CPAP regimen, as the apnea trend was definitely improving. The possibility that this is a coincidence is still an open question IMO.

I don't know why (or if) the addition of O2 is preventing your machine at the same settings from increasing pressure beyond the threshold where you would again have numerous CA events; however with EPR at 3, you are now peaking at pressure of 8.5/5.5. The residual OA events suggest a higher EPAP pressure would be helpful, and I still think it would be beneficial to reduce EPR to 2 or even 1. I also think you should consider limiting maximum pressure to 9.0 just in case. I do note that the addition of oxygen, and the improvement in apnea results has not changed your respiration parameters at all in terms of resp rate, I/E ratio or tidal volume.

What rate are you bleeding oxygen into the system?

[methodicalfool]

Hi DeepBreathing,

Thanks for your feedback and the encouraging words.  In regards to what you said here:

It would be very interesting to know if the centrals showed up in your original sleep study. If so your doctor should have set you on a path to an adaptive servo ventilator (ASV), which is a machine specifically designed to treat central apnea.

I scanned in my sleep study so I can share it here...





I'm really new to all of this stuff so I'm not really sure how to interpret this data (Or the SleepyHead reports for that matter).

I told my doctor that my Dad and Brother were both diagnosed with Central Sleep Apnea and he said that their diagnosis was probably incorrect because of the rarity of Central Sleep Apnea.  So I was a bit surprised when you mentioned that CA (Clear Airways) indicates a Central Sleep Apnea issue.  I'm not sure what to make of above diagnosis stuff because I don't really know what's "high" for CA.

Anyhow, I'd love to hear any thoughts or observations.  :-)

Thanks!

Jeremy

[ajack]

o2 should be done on an overnight study, some do it at home with the recording cms series. They tend to have the actual percent reduced a bit, so that it doesn't read high. The odds are you are 2% higher than the cms says.

over oxygenation is dangerous, as in you can die. it should be done with a doctor. I wouldn't have more o2 from the machine overnight than you read off the cms, without o2 and just sitting in a chair, unless you have obvious pulmonary/lung issues and again a doctor is required.

I would have worked with the cpap machine first, it is what it's for. Some people do need o2 but they are on bpap and home ventilators

[methodicalfool]

Hi Sleepyrider!

Thank you so much for taking the time to share your observations here.  I got sick right after I posted the review and was playing "catch up" so I didn't have time to study your reply right away.  

One thing I noticed that was a single night without my CPAP made a *huge* difference in how I felt the next day.  I skipped the CPAP mask because I had a runny nose and the following day I had terrible brain fog and needed two naps just to function.   Thankfully, using the CPAP that night brought back my amazing results the next day.

Your poor results early in treatment were mainly due to central apnea, although some obstructive is clearly present.  Your settings at 6-12 cm with EPR at 3 resulted in a rapid increase of pressure when the initial OA was detected.  As soon as pressure went over 10 cm you were in an unbreakable cycle of CA and OA.   If you had posted this to the forum, my recommendation would have been to reduce maximum pressure to 8.5 and reduce EPR to 1.  That should have both reduced OA and prevented the APAP from rising to a pressure where you clearly have abundant CA.  The use of EPR also significantly affects CA in individuals like you.  The SpO2 results were the consequence of a high rate of complex apneas that mostly arose in response to the pressure settings of your machine, and whatever else seems to trigger complex apnea.  The addition of oxygen may have helped to prevent the apnea, or you may simply have adapted to the CPAP regimen, as the apnea trend was definitely improving.  The possibility that this is a coincidence is still an open question IMO.

Your skepticism makes me want to try a night without the oxygen concentrator to see if I suddenly have a ton of events again.  Of course, I also wonder-- with it working so well --is it worth tweaking?  Lately my events have been between 1.5 - 3 per hour (and my "worst" night was around 5 per hour).   Plus, I feel incredible!  I'm a little nervous about rocking the boat but I am interested in identifying what ultimately caused this sudden shift.  I know around a half dozen people that are getting unimpressive results with their CPAP machine and I wonder if they need to adjust their settings--or if adding oxygen would help them too.

My doctor indicated that he would make adjustments to my CPAP but I discovered that it's really easy to access the clinical menu myself and make changes without him.  So I'm open to trying things but I'm wondering if I should when I'm already getting fantastic results.  When it comes down to it--I really have no idea what I'm doing.  I had to really study what you were saying to make sense of it (e.g. had to look up EPR, etc).  Is there a "starter guide" I can refer to that'll teach me the basics?  I had no idea that the CPAP could *cause* central sleep apnea, for example.

I don't know why (or if) the addition of O2 is preventing your machine at the same settings from increasing pressure beyond the threshold where you would again have numerous CA events; however with EPR at 3, you are now peaking at pressure of 8.5/5.5.  The residual OA events suggest a higher EPAP pressure would be helpful, and I still think it would be beneficial to reduce EPR to 2 or even 1.  I also think you should consider limiting maximum pressure to 9.0 just in case.

I'd be willing to experiment with this.  I've also considered trying a night without the oxygen to see what happens... and then if the events spike again try increasing the pressure to compensate for the pressure that was lost by disconnecting the oxygen.  It'd be interesting if I discovered that it was the increased pressure and not the actual oxygen that gave me a huge boost.

Of course, on the flip side, the reason I added oxygen was because my oxygen levels were dipping down to the low 80's (and beyond) so frequently.  I figured that couldn't be healthy so I wanted to address it.  I've also done some tests where I wore my pulse oximeter and just walked around doing very basic tasks (nothing strenuous) and found that my oxygen level sometimes dips super low while just going about my business.  So either way, I figure that it would be good to have an oxygen supplement... and it's a bonus that it's automatic.  Some people pay money to go to oxygen bars for 30 - 60 minutes at a time... and I get a high concentration of oxygen for 6 - 8 hours at a time.  I've also heard people say that deep breathing exercises can dramatically increase a person's energy level.  Just think'n out loud here...

I do note that the addition of oxygen, and the improvement in apnea results has not changed your respiration parameters at all in terms of resp rate, I/E ratio or tidal volume.  

I have no idea how to read resp rate, I/E ratio or tidal volume.  This is where some kind of succinct beginners guide would come in handy...

What rate are you bleeding oxygen into the system?

The oxygen concentrator pushes out up to 5 LPM (Liters Per Minute?).  I have it set to 2.5 and I'm afraid to change it to anything else.  The doctor prescribed 1 -3 LPM.

Another thing I've considered doing is trying just oxygen without the CPAP machine.  I have the nasal cannula that plugs directly into the oxygen concentrator so I could try it.  Unfortunately, the only success indicators I'd have is my pulse oximeter and how I feel the next day.  I have my doubts about the oxygen working all on it's own but I'm interested in trying it  any way.

Any and all input is welcome.  Thanks so much for the suggestions you've offered so far!  :-)

Jeremy

[ajack]

I know I'm wasting my typing because you are convinced it's the best thing since sliced bread.
It does work, I had alarmed fully monitored o2 for apnea while I was in hospital for an operation. I didn't bring my cpap, so this was the next best thing. the general wards don't have pap NIV machines..

I would have listened to your sleep doctor, it's doubtful you need o2 and it's obvious the doctor who wrote it up wasn't a sleep doctor.

[Walla Walla]

I can see why you feel better with oxygen. Your sleep Study showed you at or below 90% for a 1HR and 45 minutes and below 88% for 39 minutes. Your body was starving for oxygen. The additional oxygen caused your body to produce more CO2 which triggers the brain to breath. Without the extra oxygen the higher pressure from CPAP washing out the CO2 from your lungs and the brain didn't get the trigger to breath. That's guess anyway. Still need a ASV machine though.

[methodicalfool]

Thanks for your thoughts ajack and Walla Walla!

I'm super new to all of this (including posting to message boards) so I'm sorry if I'm not using proper etiquette or seem like a total novice.  I'm here because I really want answers.  There were things that both of you said that I  wanted to reply to so I'm replying to both of you in a single post...

I know I'm wasting my typing because you are convinced it's the best thing since sliced bread.
It does work, I had alarmed fully monitored o2 for apnea while I was in hospital for an operation. I didn't bring my cpap, so this was the next best thing. the general wards don't have pap NIV machines..

I would have listened to your sleep doctor, it's doubtful you need o2 and it's obvious the doctor who wrote it up wasn't a sleep doctor.

I'm willing to be objective about this and I really appreciate you chiming in.  I saw your previous post right before I went to bed and considered unplugging the oxygen.  I kept it but I had nightmares about it all night.  :-P

At this point I'm not sure where to go.  I felt so much better as soon as I added oxygen but I'm willing to try something different if oxygen is dangerous or has unexpected down-sides.  And to clarify, my sleep doctor dismissed the idea of adding oxygen when I talked with him about it on my first appointment (before I had a CPAP prescription).  In a nutshell, he said that oxygen isn't enough by itself and that you need to breath right--so a CPAP is the way to go.  It strikes me as interesting though that several people here have said there's evidence of central sleep apnea in my reports.  I suggested to my doctor that I probably had central sleep apnea due to my Dad and Brother being diagnosed with it--and he replied that they were probably diagnosed wrong (because "central sleep apnea is rare" he said).

I've since tried to reach him through their "patient portal" but-- due to their faulty system--have not been able to gain access and it's the only way his staff will let me communicate with him.  I have terrible insurance so an office visit costs $180 and then I just have to hope that I get everything I need.  The other doctor that prescribed the oxygen was a general practitioner and I happened to have an appointment so I showed them a dozen Pulse Oximetry reports and they wrote me a prescription for oxygen right on the spot.  This was the same doctor that ordered the sleep study in the first place because I reported that I was always tired.  Unfortunately, directly after giving me the oxygen prescription, my general practitioner announced they were closing their practice because they just found out their spouse had stage 4 cancer and they want to take care of them.  My general practitioner was great about letting me communicate and get answers by email... but now I feel like I'm kind of on my own.

Unfortunately, I'm getting the vibe from people here that my experimenting may be dangerous--so I definitely appreciate you guys speaking up!

I can see why you feel better with oxygen. Your sleep Study showed you at or below 90% for a 1HR and 45 minutes and below 88% for 39 minutes. Your body was starving for oxygen. The additional oxygen caused your body to produce more CO2 which triggers the brain to breath. Without the extra oxygen the higher pressure from CPAP washing out the CO2 from your lungs and the brain didn't get the trigger to breath. That's guess anyway.  Still need a ASV machine though.

Thank you for acknowledging this!  I've felt confused as to why everyone seems to dismiss the fact that my oxygen levels were terrible.  If I don't qualify for supplemental oxygen then I don't know who would.  I also find it interesting that my oxygen levels regularly drop below 90% when I walk around with the pulse oximeter on while doing simple non-strenuous tasks.  It makes me wonder if I have a general issue with oxygen that's currently undiagnosed.

Anyhow, I'm open to suggestions and ideas.  Is low oxygen not a problem?  Should I just focus on getting my number of events reduced?  Adding oxygen seemed to do that too... but again, if it's dangerous then I'm willing to try a different approach.  In the end, I just want to not be tired all the time... and I'd like to not die.  :-P

Thanks!

Jeremy

[Walla Walla]

If your O2 levels are dropping during the day than you have additional problem going on along with sleep apnea. I suggest you ask your Doctor to send you to a Pulmonologist to get further tests. As long as your Oxygen level is set to what the Doctor said you shouldn't have any side effects. But you still want to get get it looked at to find the problem.