Wildly fluctuating O2 levels

Posted by kudzu @kudzu, Jul 16, 2022

I’m experiencing wildly fluctuating o2 levels on finger oximeter. This morning already I’ve been everywhere from 71 to 99, especially while standing still.
I went to the ER June 3 with this and they couldn’t find anything. My pft of June 3 indicated restrictive lung disease. May or may not be due to Amiodarone.
I’m going to Mayo July 27 to see a pulmonologist.
Very scary and depressing.
I know if I go back to the ER they probably won’t find anything, and I read in my medical records that my pcp has diagnosed hypochondriasis(not the case, this is really happening).
Anyone else have this?

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@sueinmn

You asked, "...Can shallow breathing cause this if there is a somekind of lung defect..." The answer is absolutely. I can sit in a chair, breathe shallowly and watch my O2 sats decline minute by minute. Similarly, I can deep breathe and watch them recover. (By the way, I do have a number of lung issues, but my day-to-day sats, except during exertion, are in the mid nineties.)

Think about the mechanics of breathing - when you breathe in shallowly, you take in a much smaller volume of air with which to replace the oxygen in you lungs. When you breathe out shallowly, you expel much less carbon dioxide, which interferes with the lungs' ability to use the oxygen you are inhaling. Also a normal full breath cycle, not even deep breathing, inflates
and empties all four lobes of your lungs, but a shallow breath either only reaches the upper lobes, or partially inflates & deflates the 4 lobes.

I used to wake often during the night - sometimes feeling like a fish trying to breathe out of water. For the past 2 months, I have been working with a therapist on deep breathing to improve my sleep and reduce pain. Doing belly breathing exercises randomly throughout the day, and 10 minutes of deep breathing and relaxation in bed to fall asleep. My Fitbit has recorded a great improvement in my sleep pattern. I wish it recorded O2, but sadly it does not.

Do you have any underlying lung or heart issues? Maybe when you have your sleep study, if they do not find apnea, you can ask about some breathing exercises to teach yourself to more fully inflate/deflate your lungs?

Sue

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Well I got a sleep study but pulmonologist was a jerk and I now need a real research oriented clinic to evaluate my situation. I assumed I had Central sleep apnea where you just don’t breath. It not obstructive. My research indicated it’s rare, less than 1% and CPAP usually doesn’t work. Sometime supplemental oxygens works great. I asked if they had O2 at the sleep clinic, no they didn’t. Anyway, study started at 11pm, woke me before 1am to put on CPAP as I was having acute sleep apnea. Kept increasing pressure until it was rediculous.
Later Dr called and was going to send me a CPAP machine. I told him NO. Asked for apt to discuss results. He was a jerk, couldn’t even give me a copy of the actual chart which is the type you can see on the net. I am going to do my own study with supplemental oxygen and have first appointment end of October with a real sleep clinic who works with a group of pulmonologist, cardiologist, and Neuralogist. Etc.
Now that I think back on. My history, every time I was in the hospital and all wired up, the O2 would always alarm. I would breath a bunch to force it up.
I always had problems with the O2 gadgets and assumed they didn’t work right on me. Apparently, they were right and I have the problem. I will get to the bottom and fill you guys in.
With the O2 ring I can breath and watch the level drop from 98 to low 90,s or even 80 over a 30 second span. I feel ok. Just strange. During day and active it’s fairly normal, but slight relaxed state with shallow breathing it goes into this cycle behavior.
Is gadget wrong or is it me.
On me O2 flucuent constantly about 8-10 points at roughly one minute cycle. The average will vary with sleep stages and can drop to low 80,s. On my wife, nice slowly varying signal, so not the device.
There is a phrenic nerve stimulator which is like a pace maker and will stimulate the diafram if you don’t breath. It’s surgery, but may be needed in real central apnea

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@drwass3

Well I got a sleep study but pulmonologist was a jerk and I now need a real research oriented clinic to evaluate my situation. I assumed I had Central sleep apnea where you just don’t breath. It not obstructive. My research indicated it’s rare, less than 1% and CPAP usually doesn’t work. Sometime supplemental oxygens works great. I asked if they had O2 at the sleep clinic, no they didn’t. Anyway, study started at 11pm, woke me before 1am to put on CPAP as I was having acute sleep apnea. Kept increasing pressure until it was rediculous.
Later Dr called and was going to send me a CPAP machine. I told him NO. Asked for apt to discuss results. He was a jerk, couldn’t even give me a copy of the actual chart which is the type you can see on the net. I am going to do my own study with supplemental oxygen and have first appointment end of October with a real sleep clinic who works with a group of pulmonologist, cardiologist, and Neuralogist. Etc.
Now that I think back on. My history, every time I was in the hospital and all wired up, the O2 would always alarm. I would breath a bunch to force it up.
I always had problems with the O2 gadgets and assumed they didn’t work right on me. Apparently, they were right and I have the problem. I will get to the bottom and fill you guys in.
With the O2 ring I can breath and watch the level drop from 98 to low 90,s or even 80 over a 30 second span. I feel ok. Just strange. During day and active it’s fairly normal, but slight relaxed state with shallow breathing it goes into this cycle behavior.
Is gadget wrong or is it me.
On me O2 flucuent constantly about 8-10 points at roughly one minute cycle. The average will vary with sleep stages and can drop to low 80,s. On my wife, nice slowly varying signal, so not the device.
There is a phrenic nerve stimulator which is like a pace maker and will stimulate the diafram if you don’t breath. It’s surgery, but may be needed in real central apnea

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please let us know how this turns out. They want me to do a sleep study test.

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I have been experiencing the same issues for at least a year now. I was recently diagnosed with nocturnal hypoxemia without obstruction. My pulmonary function test was normal. My gut says it's something neruo muscular or central nervous system related. Did you receive a diagnosis at Mayo?

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@drwass3

Well I got a sleep study but pulmonologist was a jerk and I now need a real research oriented clinic to evaluate my situation. I assumed I had Central sleep apnea where you just don’t breath. It not obstructive. My research indicated it’s rare, less than 1% and CPAP usually doesn’t work. Sometime supplemental oxygens works great. I asked if they had O2 at the sleep clinic, no they didn’t. Anyway, study started at 11pm, woke me before 1am to put on CPAP as I was having acute sleep apnea. Kept increasing pressure until it was rediculous.
Later Dr called and was going to send me a CPAP machine. I told him NO. Asked for apt to discuss results. He was a jerk, couldn’t even give me a copy of the actual chart which is the type you can see on the net. I am going to do my own study with supplemental oxygen and have first appointment end of October with a real sleep clinic who works with a group of pulmonologist, cardiologist, and Neuralogist. Etc.
Now that I think back on. My history, every time I was in the hospital and all wired up, the O2 would always alarm. I would breath a bunch to force it up.
I always had problems with the O2 gadgets and assumed they didn’t work right on me. Apparently, they were right and I have the problem. I will get to the bottom and fill you guys in.
With the O2 ring I can breath and watch the level drop from 98 to low 90,s or even 80 over a 30 second span. I feel ok. Just strange. During day and active it’s fairly normal, but slight relaxed state with shallow breathing it goes into this cycle behavior.
Is gadget wrong or is it me.
On me O2 flucuent constantly about 8-10 points at roughly one minute cycle. The average will vary with sleep stages and can drop to low 80,s. On my wife, nice slowly varying signal, so not the device.
There is a phrenic nerve stimulator which is like a pace maker and will stimulate the diafram if you don’t breath. It’s surgery, but may be needed in real central apnea

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@drwass3 your readings will drop when you have been sleeping. That’s normal.

I had similar symptoms when I was on the drug Methotrexate. Once I stopped taking it, my lungs cleared and I am back to normal.

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@kudzu

Thanks for the reply, Sue.
No, I was not blue and if I hadn’t checked it I would not have known other than maybe slight shortness of breath or lightheaded ness. I’ve seen readings like that before on a different meter. I think it’s me. Another possibility is that they suspect I have Reynaud’s and the circulation to my fingers was not good. I have seen my palms and the soles of my feet turn blue intermittently(they were cold). Oddly, at that time the readings were normal if I recall right. If I start moving around the cyanosis goes away.
No, such readings have not been noted in the doctor’s office. It’s usually high 90’s in there.
If I hadn’t gotten pictures on my phone I don’t think they would have believed me. I have a series of pictures taken in a span of 60-90 seconds that go from 75-98. I was standing and talking on the phone during the whole thing.
I wonder if this is postural, something like pots or orthostatic hypotension. I do have lowish blood pressure that fluctuates quite a bit.
I also notice low readings in the car after I’ve been sitting still though not that low-maybe 91. Although I was sitting very still in the car looking at a map and caught a reading of 77 back in March. Didn’t last long. Shallow breathing?
I’m also looking at when it happens. Right now I’m taking a close look to see if it correlates with exertion at all. I’m a gym rat and if it’s happening, it’s either intermittent or I’m just not catching it. I’ve checked the oximeter while on treadmill and stepclimber and it stays high 90’s except for occasional dips into high 80’s that are transient.
It’s very wierd. I’ve had it dip into the mid 80’s walking around a parking lot, felt nothing, and kept walking. Took a few minutes but came back up to high 90’s and stayed there.
The really odd thing is that it doesn’t seem to last long.
Sorry this is so long, but it’s a wierd thing that’s mysterious.
Can’t wait to get to Mayo. If anybody can nail it, they can.

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Did you ever receive a diagnosis? I have been dealing with the same thing for over a year now. I did an overnight sleep study and was diagnosed with nocturnal hypoxemia....I was at 88 for about an hour. They put me on supplemental oxygen for sleep and it seems to be helping, but I do still get dips in my o2 levels in my sleep....sometimes as low as mid 70's. I did a pulmonary function test and it was normal, but when I walked a few laps in the office with my dr and had the o2 reader on finger he could see that I would have sudden random drops...as low as 93 and he wasn't expecting to see that. I get that same feeling of my chest having this kind of sqeezing feeling or heaviness and then lightheaded. The lightheadedness is what lets me know that its happening. My gut feeling is that it is neuromuscular or something with my nervous system. Its like something is short circuiting. I saw cardiologist and my heart was fine, but I do get mild arrhythmias and have bradycardia. I would just like to be able to help guide the doctors to the right tests I guess. It is the weirdest thing and does not make sense to any of the doctors. They thought for sure I had obstructive sleep apnea, but I "shocked" them.

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@nmac

Did you ever receive a diagnosis? I have been dealing with the same thing for over a year now. I did an overnight sleep study and was diagnosed with nocturnal hypoxemia....I was at 88 for about an hour. They put me on supplemental oxygen for sleep and it seems to be helping, but I do still get dips in my o2 levels in my sleep....sometimes as low as mid 70's. I did a pulmonary function test and it was normal, but when I walked a few laps in the office with my dr and had the o2 reader on finger he could see that I would have sudden random drops...as low as 93 and he wasn't expecting to see that. I get that same feeling of my chest having this kind of sqeezing feeling or heaviness and then lightheaded. The lightheadedness is what lets me know that its happening. My gut feeling is that it is neuromuscular or something with my nervous system. Its like something is short circuiting. I saw cardiologist and my heart was fine, but I do get mild arrhythmias and have bradycardia. I would just like to be able to help guide the doctors to the right tests I guess. It is the weirdest thing and does not make sense to any of the doctors. They thought for sure I had obstructive sleep apnea, but I "shocked" them.

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I also do not have obstructive sleep apnea. I have been put on O2 at night mostly normal but randomly it drops down to 88 -86 also noticed that pulse rate will drop down to 47, told my doctor she says my heart is GREAT and nothing is wrong there. I done the pulmonary test and it is fine. The only drugs I am currently taking are pravastatin so I don't think that's the problem. I personal think I have a issue with O2 dropping more during the day then the night. I agree I think something more along the lines central apnea all the time. Or maybe long covid. If anyone has any recommended tests please let me know.

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@eligh

I also do not have obstructive sleep apnea. I have been put on O2 at night mostly normal but randomly it drops down to 88 -86 also noticed that pulse rate will drop down to 47, told my doctor she says my heart is GREAT and nothing is wrong there. I done the pulmonary test and it is fine. The only drugs I am currently taking are pravastatin so I don't think that's the problem. I personal think I have a issue with O2 dropping more during the day then the night. I agree I think something more along the lines central apnea all the time. Or maybe long covid. If anyone has any recommended tests please let me know.

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Knock on wood....I have not had covid and not on meds...if this helps you at all.

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@eligh

I also do not have obstructive sleep apnea. I have been put on O2 at night mostly normal but randomly it drops down to 88 -86 also noticed that pulse rate will drop down to 47, told my doctor she says my heart is GREAT and nothing is wrong there. I done the pulmonary test and it is fine. The only drugs I am currently taking are pravastatin so I don't think that's the problem. I personal think I have a issue with O2 dropping more during the day then the night. I agree I think something more along the lines central apnea all the time. Or maybe long covid. If anyone has any recommended tests please let me know.

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My pulmonologist told me that was normal after I asked him after having done a home sleep study. That being said I live at high altitude which may not be your case.

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@sadiecat

My pulmonologist told me that was normal after I asked him after having done a home sleep study. That being said I live at high altitude which may not be your case.

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Thanks, that is helpful I also live a high altitude, so that does make me feel better.

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Yes, just saw the pulmonologist today and he said there are people here in Colorado many who are walking around comfortably at 88, no problem. I met a woman who lived in Leadville, CO who had a business selling oxygen there which was probably a public service at almost 14,000 feet. I probably wouldn’t even be on supplemental oxygen for right now pneumonia if I lived at sea level.

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