Pros and cons of supplemental O2?
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Pros and cons of supplemental O2?
53 yo female, w/ Ehler-Danlos Syndrome, diagnosed a year ago with severe OSA. At first I was on a CPAP machine, and adjusted pretty well to using it, but my O2 sat was low, so they switched me to a Bipap. O2 sat still low, like 90 minutes at mid 80s. They raised the pressures, and the O2 sat improved, but I can’t stand it (minimum ep 11, ps 6, and maximum ip 20 cm). The pressure is so high I feel like my throat is being physically stretched out. I can’t swallow. Air is blowing up my stomach and causing gas. They told me to try a full face mask (I use nasal pillows) but it leaks (loudly) no matter how tight I pull it because the pressure is so high, and still hurts my throat. If I open my mouth at all my cheeks are forced out chipmunk-style! I’m getting less sleep than ever!
They said dealing with O2 would be a hassle, and we want to avoid it, but I’m not sure why? I wouldn’t have to lug it around with me like people with copd do, as I only need it when sleeping. Oxygen concentrator mean no tanks to refill. I’m guessing insurance will be a hassle, but otherwise I can’t see why using oxygen would be worse than the current state of affairs. My only worry is that I travel frequently and would have to lug another machine with me on my travels.
I would love to hear from those who have tried oxygen. Did it help? Is it a hassle? Anything else I could try to make these pressures tolerable?
They said dealing with O2 would be a hassle, and we want to avoid it, but I’m not sure why? I wouldn’t have to lug it around with me like people with copd do, as I only need it when sleeping. Oxygen concentrator mean no tanks to refill. I’m guessing insurance will be a hassle, but otherwise I can’t see why using oxygen would be worse than the current state of affairs. My only worry is that I travel frequently and would have to lug another machine with me on my travels.
I would love to hear from those who have tried oxygen. Did it help? Is it a hassle? Anything else I could try to make these pressures tolerable?
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Re: Pros and cons of supplemental O2?
Hi UpstateMom,
Prolonged exposure to pure oxygen is harmful and can lead to oxygen toxicity. So whenever considering possible oxygen supplementation, a lot of thought has to go into balancing the need with negative effects.
Here's some info:
https://en.wikipedia.org/wiki/Oxygen_toxicity
What I think your doctors are saying is: the situation at the moment is: you are receiving one treatment, and the best effect to be gained from that is through treatment management.
And: in their view. you haven't found the right combination of treatment factors yet.
Adding oxygen is providing two treatments. And two sets of things to manage. So: is the second treatment at the point of being a necessity?
Prolonged exposure to pure oxygen is harmful and can lead to oxygen toxicity. So whenever considering possible oxygen supplementation, a lot of thought has to go into balancing the need with negative effects.
Here's some info:
https://en.wikipedia.org/wiki/Oxygen_toxicity
What I think your doctors are saying is: the situation at the moment is: you are receiving one treatment, and the best effect to be gained from that is through treatment management.
And: in their view. you haven't found the right combination of treatment factors yet.
Adding oxygen is providing two treatments. And two sets of things to manage. So: is the second treatment at the point of being a necessity?
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- chunkyfrog
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Re: Pros and cons of supplemental O2?
Sorry you are having such a hard time.
Hang around, and the gang here will try to help you.
Hang around, and the gang here will try to help you.
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- bluper@cableone.net
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Re: Pros and cons of supplemental O2?
I am using oxygen with my cpap. I have a large and cumbersome concentrator. My apneas
were 70 and my O2 was 70. After cpap and oxygen for a year, I am apnea free. Oxygen has cleared my brain fog and content tiredness. I too travel and I haul my cpap and concentrator everywhere I go. I can't function without it. My insurance wouldn't cover the concentrator so I bought a used one from Oxygenplus online. My sleep Dr. Told me to do this.
were 70 and my O2 was 70. After cpap and oxygen for a year, I am apnea free. Oxygen has cleared my brain fog and content tiredness. I too travel and I haul my cpap and concentrator everywhere I go. I can't function without it. My insurance wouldn't cover the concentrator so I bought a used one from Oxygenplus online. My sleep Dr. Told me to do this.
_________________
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Bluper
Re: Pros and cons of supplemental O2?
My advice is anecdotal but there are some overlaps between your story and my teenage son's. We are all different, but perhaps his experiences can be of some help. My son hasn't seen a geneticist yet to "officially" be diagnosed with EDS but a POTS specialist he saw at Mayo was pretty sure he has hEDS, so EDS is likely something the 2 of you have in common.
When my son first started using an APAP machine the pressure that resulted in a "treated" AHI was not enough to get his O2 sats high enough, but like with you the docs determined that a higher pressure resolved the hypoxia. Like you my son was not able to tolerate the higher pressure, he started loosing considerable weight because he was experiencing severe nausea, gas, and abdominal pain after using his APAP.
My son's doctor decided to drop the pressure on the APAP and add supplemental O2. With the lower pressure the abdominal distension is no longer an issue and the supplemental O2 has resolved the hypoxia. The biggest drawback for my son is that the lower pressure has resulted in a higher AHI. For my son the lower pressure + O2 isn't perfect, but it is the best treatment for him that we have found so far.
My son's O2 concentrator is big and noisy, but you can use up to 50' of tubing so we keep the concentrator outside of his room which helps. When we travel by car we bring the concentrator, we leave it home when traveling by air. We live at high elevation so my son can get by for a few nights without the O2 when we travel to lower elevations. I believe for air travel you can purchase a more portable unit or set up a concentrator rental at your destination if needed.
We are fortunate because my son has a great sleep doc! His doc was able to get his O2 covered by having him do a titration study with strictly defined parameters (the tech was directed not raise the pressure beyond a certain level). Without the higher pressure my son's O2 levels demonstrated a need supplemental O2. Alternatively if you can afford it you may want to ask your doc to give you a script for a concentrator and buy it out of pocket. The monthly rental costs for O2 concentrators can be pricey, insurance policies vary but sometimes it is less expensive in the long run to buy a concentrator out of pocket.
My 2 cents is if you can get your docs on board why not give the O2 a try. I hate to be cynical, but I suspect part of "the hassle" your doc is concerned about is the extra hassle the doctor will have to go thru to justify O2 to your insurance.
When my son first started using an APAP machine the pressure that resulted in a "treated" AHI was not enough to get his O2 sats high enough, but like with you the docs determined that a higher pressure resolved the hypoxia. Like you my son was not able to tolerate the higher pressure, he started loosing considerable weight because he was experiencing severe nausea, gas, and abdominal pain after using his APAP.
My son's doctor decided to drop the pressure on the APAP and add supplemental O2. With the lower pressure the abdominal distension is no longer an issue and the supplemental O2 has resolved the hypoxia. The biggest drawback for my son is that the lower pressure has resulted in a higher AHI. For my son the lower pressure + O2 isn't perfect, but it is the best treatment for him that we have found so far.
My son's O2 concentrator is big and noisy, but you can use up to 50' of tubing so we keep the concentrator outside of his room which helps. When we travel by car we bring the concentrator, we leave it home when traveling by air. We live at high elevation so my son can get by for a few nights without the O2 when we travel to lower elevations. I believe for air travel you can purchase a more portable unit or set up a concentrator rental at your destination if needed.
We are fortunate because my son has a great sleep doc! His doc was able to get his O2 covered by having him do a titration study with strictly defined parameters (the tech was directed not raise the pressure beyond a certain level). Without the higher pressure my son's O2 levels demonstrated a need supplemental O2. Alternatively if you can afford it you may want to ask your doc to give you a script for a concentrator and buy it out of pocket. The monthly rental costs for O2 concentrators can be pricey, insurance policies vary but sometimes it is less expensive in the long run to buy a concentrator out of pocket.
My 2 cents is if you can get your docs on board why not give the O2 a try. I hate to be cynical, but I suspect part of "the hassle" your doc is concerned about is the extra hassle the doctor will have to go thru to justify O2 to your insurance.
Re: Pros and cons of supplemental O2?
What in the world does that have to do with supplemental O2 in cpap therapy?rick blaine wrote: ↑Mon Nov 18, 2019 10:17 amHi UpstateMom,
Prolonged exposure to pure oxygen is harmful and can lead to oxygen toxicity. So whenever considering possible oxygen supplementation, a lot of thought has to go into balancing the need with negative effects.
In home use with a concentrator, you're usually bleeding in 90-95% oxygen, at a rate of 2-3lpm.
You're diluting that into the airstream (at her pressures) of 30-50lpm of air.
You do the maths.
Get OSCAR
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Re: Pros and cons of supplemental O2?
Im having the same thought process.
I've got my AHI hovering around 1 but my ODI(oxygen desaturation index) is stuck at 10 with 46% of the time below 95%.
I've got my AHI hovering around 1 but my ODI(oxygen desaturation index) is stuck at 10 with 46% of the time below 95%.
- raisedfist
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Re: Pros and cons of supplemental O2?
If you haven't already, you should very seriously consider moving to sea level. People who live at altitude and have problems with high blood pressure in the lungs (pulmonary hypertension) many times feel a lot better when they move to sea level. Even if your your son still has to use an oxygen concentrator at night, it's still better for his health. Health problems often don't stay static when it comes to the heart and lungs; what works now may not work in 10 years.colomom wrote: ↑Mon Nov 18, 2019 2:05 pmMy advice is anecdotal but there are some overlaps between your story and my teenage son's. We are all different, but perhaps his experiences can be of some help. My son hasn't seen a geneticist yet to "officially" be diagnosed with EDS but a POTS specialist he saw at Mayo was pretty sure he has hEDS, so EDS is likely something the 2 of you have in common.
When my son first started using an APAP machine the pressure that resulted in a "treated" AHI was not enough to get his O2 sats high enough, but like with you the docs determined that a higher pressure resolved the hypoxia. Like you my son was not able to tolerate the higher pressure, he started loosing considerable weight because he was experiencing severe nausea, gas, and abdominal pain after using his APAP.
My son's doctor decided to drop the pressure on the APAP and add supplemental O2. With the lower pressure the abdominal distension is no longer an issue and the supplemental O2 has resolved the hypoxia. The biggest drawback for my son is that the lower pressure has resulted in a higher AHI. For my son the lower pressure + O2 isn't perfect, but it is the best treatment for him that we have found so far.
My son's O2 concentrator is big and noisy, but you can use up to 50' of tubing so we keep the concentrator outside of his room which helps. When we travel by car we bring the concentrator, we leave it home when traveling by air. We live at high elevation so my son can get by for a few nights without the O2 when we travel to lower elevations. I believe for air travel you can purchase a more portable unit or set up a concentrator rental at your destination if needed.
We are fortunate because my son has a great sleep doc! His doc was able to get his O2 covered by having him do a titration study with strictly defined parameters (the tech was directed not raise the pressure beyond a certain level). Without the higher pressure my son's O2 levels demonstrated a need supplemental O2. Alternatively if you can afford it you may want to ask your doc to give you a script for a concentrator and buy it out of pocket. The monthly rental costs for O2 concentrators can be pricey, insurance policies vary but sometimes it is less expensive in the long run to buy a concentrator out of pocket.
My 2 cents is if you can get your docs on board why not give the O2 a try. I hate to be cynical, but I suspect part of "the hassle" your doc is concerned about is the extra hassle the doctor will have to go thru to justify O2 to your insurance.
Philips Respironics Trilogy 100
AVAPS-AE Mode
PS Min 6, PS Max 18, EPAP Min 4, EPAP Max 12
AVAPS-AE Mode
PS Min 6, PS Max 18, EPAP Min 4, EPAP Max 12
- raisedfist
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Re: Pros and cons of supplemental O2?
Did you have your carbon dioxide levels monitored when they did a sleep study? If you need bi-level therapy to maintain a somewhat normal oxygen saturation when you sleep, you should make sure your ventilation is adequate before you go adding supplemental O2.UpstateMom wrote: ↑Mon Nov 18, 2019 2:50 am53 yo female, w/ Ehler-Danlos Syndrome, diagnosed a year ago with severe OSA. At first I was on a CPAP machine, and adjusted pretty well to using it, but my O2 sat was low, so they switched me to a Bipap. O2 sat still low, like 90 minutes at mid 80s. They raised the pressures, and the O2 sat improved, but I can’t stand it (minimum ep 11, ps 6, and maximum ip 20 cm). The pressure is so high I feel like my throat is being physically stretched out. I can’t swallow. Air is blowing up my stomach and causing gas. They told me to try a full face mask (I use nasal pillows) but it leaks (loudly) no matter how tight I pull it because the pressure is so high, and still hurts my throat. If I open my mouth at all my cheeks are forced out chipmunk-style! I’m getting less sleep than ever!
They said dealing with O2 would be a hassle, and we want to avoid it, but I’m not sure why? I wouldn’t have to lug it around with me like people with copd do, as I only need it when sleeping. Oxygen concentrator mean no tanks to refill. I’m guessing insurance will be a hassle, but otherwise I can’t see why using oxygen would be worse than the current state of affairs. My only worry is that I travel frequently and would have to lug another machine with me on my travels.
I would love to hear from those who have tried oxygen. Did it help? Is it a hassle? Anything else I could try to make these pressures tolerable?
Can you post your charts here from OSCAR sleep software? You may not NEED the higher pressures that were prescribed; the lab only has one night to titrate you, and we don't sleep the same every night, and of course not in a room with a bunch of wires attached to us. It's possible the mask you're using isn't a good fit as well. Literally the only FFM mask that works for me is the F&P Simplus.
Philips Respironics Trilogy 100
AVAPS-AE Mode
PS Min 6, PS Max 18, EPAP Min 4, EPAP Max 12
AVAPS-AE Mode
PS Min 6, PS Max 18, EPAP Min 4, EPAP Max 12
Re: Pros and cons of supplemental O2?
Get OSCAR
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
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Re: Pros and cons of supplemental O2?
I am not a medical professional -- this is best discussed with your sleep doc. That said, in your shoes, I would want to sort out instances of simple desating from hypoxia. Below 95% might be a huge problem (70 is below 95) or it might be no big deal (93 is also below 95). The real questions are how low, how frequent, how long?
Machine: Aircurve 10 Vauto (Prior S9 VPAP)
Mask: Quattro Air FFM and AirTouch F20 FFM
Mask: Quattro Air FFM and AirTouch F20 FFM
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Re: Pros and cons of supplemental O2?
Not a medical pro -- but my mom was on supplemental O2 for several years (without apnea). A few things.UpstateMom wrote: ↑Mon Nov 18, 2019 2:50 amThey said dealing with O2 would be a hassle, and we want to avoid it, but I’m not sure why? I wouldn’t have to lug it around with me like people with copd do, as I only need it when sleeping. Oxygen concentrator mean no tanks to refill. I’m guessing insurance will be a hassle, but otherwise I can’t see why using oxygen would be worse than the current state of affairs. My only worry is that I travel frequently and would have to lug another machine with me on my travels.
I would love to hear from those who have tried oxygen. Did it help? Is it a hassle? Anything else I could try to make these pressures tolerable?
Yes, supplemental oxygen is a PIA. But so are the things you are dealing with in terms of the higher pressure. So, the question really becomes a risk vs reward calculation. Part of it also depends on what your 02 needs are.
That said, breathing is a bi-directional process. Bad things happen if you don't get 02, but bad things also happen if you don't get rid of C02. Supplemental oxygen solves the first issue but not the second. As others have noted, it is worth speaking with your doc to see if that is a concern in your case.
The rest, IMHO, is mostly about money and hassle. When my mom was on O2, you got a large concentrator (long hose meant you could get away from the noise) and the back up was liquid 02 (in a R2D2 looking tank) -- and that would then fill a portable unit or two. Now there are very portable concentrators (although insurance often classes them as a luxury item and won't pay; and they don't support high flow rates).
In your shoes, I would work with the doc to try: a) adjusting PAP so that it meets your apnea needs and a bot more pressure but only to the extent you tolerate it well; and b) add supplemental oxygen to avoid the hypoxia. Then you can decide if the hassle of the O2 is worse than the hassle of the high pressures -- assuming you are able to off gas the CO2 at acceptable rate (and that is important).
Machine: Aircurve 10 Vauto (Prior S9 VPAP)
Mask: Quattro Air FFM and AirTouch F20 FFM
Mask: Quattro Air FFM and AirTouch F20 FFM
Re: Pros and cons of supplemental O2?
Appreciate the advice it would be spot on if my son had pulmonary hypertension, but thankfully he does not.raisedfist wrote: ↑Mon Nov 18, 2019 5:51 pmIf you haven't already, you should very seriously consider moving to sea level. People who live at altitude and have problems with high blood pressure in the lungs (pulmonary hypertension) many times feel a lot better when they move to sea level. Even if your your son still has to use an oxygen concentrator at night, it's still better for his health. Health problems often don't stay static when it comes to the heart and lungs; what works now may not work in 10 years.
Re: Pros and cons of supplemental O2?
I do not have the same level of expertise of many on this forum regarding OSA, but I unfortunately have had more than my fair share of life experience in dealing with complex medical issues.
I am neither a doc or an expert, but I caution you against taking some of the advise a few posters have given you. The posters are likely unaware of the full complexity that comes with connective tissues disorders and are likely unaware that many types of EDS have significant associated cardiovascular issues.
Sleepyhead is a great tool but unfortunately the only data it reports is the data generated by your BIPAP machine, and your machine does not measure your O2 levels. You stated that at the pressure you were able to tolerate your O2 levels were in the 80's for 90 minutes, that is unacceptable. My advise to you is do not drop your pressure based solely on Sleepyhead data that does not take into account your O2 levels.
I also advise you to keep pushing your docs to get O2 for you so you can give it a try. I think many of the posters cautions about supplemental O2 are unfounded. There is of course a small risk of getting to much O2, but if you implement oxygen therapy under the direction of a doctor you'll be fine.
I am neither a doc or an expert, but I caution you against taking some of the advise a few posters have given you. The posters are likely unaware of the full complexity that comes with connective tissues disorders and are likely unaware that many types of EDS have significant associated cardiovascular issues.
Sleepyhead is a great tool but unfortunately the only data it reports is the data generated by your BIPAP machine, and your machine does not measure your O2 levels. You stated that at the pressure you were able to tolerate your O2 levels were in the 80's for 90 minutes, that is unacceptable. My advise to you is do not drop your pressure based solely on Sleepyhead data that does not take into account your O2 levels.
I also advise you to keep pushing your docs to get O2 for you so you can give it a try. I think many of the posters cautions about supplemental O2 are unfounded. There is of course a small risk of getting to much O2, but if you implement oxygen therapy under the direction of a doctor you'll be fine.