Newbie -- advice re: O2 levels

hi folks,

I'm brand new to this board, after being diagnosed with sleep apnea last summer.

I have a question I'm hoping some people can respond to, as I've been searching the internet for a few hours now and not finding a whole lot about this.

After complaining of insomnia and chronic exhaustion to my primary care, I did a home sleep study. The results showed that I had an average of 21 AHI and that my oxygen level was below 88% for 123 minutes, and declined as low as 75%.

I started CPAP in October and have been using it religiously. According to my machine, I'm down to having only .5 - 1.5 AHI/hour. But I'm not feeling any better.

Last month, my doc wanted me to use the oximeter overnight again, to measure my oxygen levels. They were basically the same: 121 min below 88%, lowest decline at 76%.

Saw a pulmonologist. He is going to do a pulmonary function test but wants to start me on supplemental oxygen right away. I started a few days ago, and am not feeling any better. Any help with the following questions would be most appreciated!

-- How can my levels be so low even with CPAP?
-- I saw a cardiologist and had an echocardiogram, which was fine. Besides a pulmonary function test, are there other testsI should have?
-- What are the risks of using supplemental O2? I've heard your body can get used to it and not be able to function without it.
-- I'm not feeling better after 2 days of O2. If it's going to help, would I notice right away?

Thanks!

Also, I just started using Sleepytime but am pretty unsure how to interpret the results. If anyone can point to specific things I should keep an eye on, please do!

What are your pressure settings? Too often the minimum is set too low to be effective and needs to be bumped a bit.. what is yours please?

you need a pulmonologist as sleep doctor and pulmonologist in the same person. run from the quack that saw your low o2 and let you out without o2. to me that's incompetence. call the pulmo tommorrow and tell him to send the o2 immediately. doctors order and insurance approves o2 if you are under 88 for 6 minutes total all night and you're at 121. get serious, stay alive. many people use o2 with cpap. the pulmo may find you with another undiagnosed disease causing some of it.

Thanks Julie. My pressure settings (on auto) are 6 -20.

I'm trying to upload some of my charts.

Here's from a night without supplemental oxygen: https://imgur.com/a/vAGuj

Here's from a night with oxygen: https://imgur.com/a/cOZlb

I'm really not sure what exactly to look for to judge how I'm doing -- any advice welcome!

Sorry if I wasn't clear, greatunclebill, I *did* start the O2, two nights ago.

Just trying to better understand what's happening. Thanks.

kikala wrote:Sorry if I wasn't clear, greatunclebill, I *did* start the O2, two nights ago.

Just trying to better understand what's happening. Thanks.

i noticed that.was typing faster than thinking. as far as side effects, i don't know. not having the right o2 can do more damage than using it can. your doctor is the only one than can tell you how you should be feeling and when because he knows your medical history. please keep us posted as this plays out. have you checked your daytime o2?

Yes, my daytime O2 level seems OK, though not ideal -- usually 93 or so, but it fluctuates from 92 - 96. I have a chronic illness that keeps me quite sedentary, which I'm sure doesn't help.

kikala wrote:Yes, my daytime O2 level seems OK, though not ideal -- usually 93 or so, but it fluctuates from 92 - 96. I have a chronic illness that keeps me quite sedentary, which I'm sure doesn't help.

Let me know what you find out and I'll let you know what I find out.... We are in same boat. I have same daytime levels as you as well and I just started supplemental 02 when sleeping as well 2 weeks ago. I am also not feeling much better and was just approved to see pulmonologist so now I just have to find one and make appointment.

Main risk to 02 depends. It can reduce your respiratory rate or if you have severe COPD in some people it can cause them to stop breathing all together but I think that's rare.

Are you on any medications that can cause fatigue?

Hi, your AHI's are good, but your min. pressure setting (not ramp setting) is very low and I'd bump that to e.g. 7 for a couple of nights to be more effective. Don't try to deduce anything by daytime levels of 02 etc, just not relevant to sleep patterns. The odd drop in 02 is more likely due to the low pressure setting if anything.

kikala wrote: I have a chronic illness

Do you care to say what this is? For all we know, it might be an important factor in CPAP therapy and supplemental O2 needs.

ChicagoGranny wrote:Do you care to say what this is? For all we know, it might be an important factor in CPAP therapy and supplemental O2 needs.

I have ME/CFS -- have been sick with it since 1990. Wretched illness. But I had a sleep test in 1992 and didn't have sleep apnea, so I'm guessing that the resulting weight gain, sedentary-ness, and progression of ME/CFS have all contributed to current apnea.

USMCVet wrote:Let me know what you find out and I'll let you know what I find out.... We are in same boat. I have same daytime levels as you as well and I just started supplemental 02 when sleeping as well 2 weeks ago. I am also not feeling much better and was just approved to see pulmonologist so now I just have to find one and make appointment.

Yes, USMCVet, I've been following some threads of yours and hope we can both get some relief from the O2, even if it's not happening yet!

Julie wrote:Hi, your AHI's are good, but your min. pressure setting (not ramp setting) is very low and I'd bump that to e.g. 7 for a couple of nights to be more effective. Don't try to deduce anything by daytime levels of 02 etc, just not relevant to sleep patterns. The odd drop in 02 is more likely due to the low pressure setting if anything.

Thanks Julie. The thing is, my O2 was the same when I didn't use O2 at all, so could it still be that it would be better with a higher pressure setting?

Thanks everyone for input -- I appreciate it! Keep the ideas coming

If you're dealing with these and maybe other underlying undiagnosed problems, i'd bump any ideas off of your doctor before changing things.

Are you able to import your oximeter data into SleepyHead? It would be helpful to see if the desaturations you are experiencing occur around the same time that scored events are occurring.

Also, I agree that you should experiment with bumping up the min pressure to help keep your airway open, and make the machine a bit more proactive instead of chasing events after the fact.

Have you done a pulse oximeter recording overnight while using the supplemental oxygen? I don't think you would know a huge difference in two days - but maybe some improvement in symptoms like waking up with headaches would improve in the short-term. You can't get addicted to oxygen. You either need it or you don't.

And finally, it seems there is a lot of information out there relating to CFS and oxygen desaturations due to many different things (infections, muscle weakness, hyperventilating on exertion, etc). Have you been given a full workup for the CFS, and are you receiving any medications to treat it/anything related to it?

I forgot to mention..... One possibility and again I'm certainly no Dr but I wonder if brain damage is playing a part as well from all that time with lack of oxygen? Some of the things I read basically said most damage resolves itself within a year.

Has your Dr prescribed provigil or nuvigal yet? I ordered some adrafinil which comes in the mail today which is the non prescription version I am going to try Saturday.


ETA: have they done a titration Study with you? They don't want me on oxygen so tomorrow I have titration study to see if a Bipap will help oxygenate me without the need of supplemental oxygen.

Matt00926 wrote:Are you able to import your oximeter data into SleepyHead? It would be helpful to see if the desaturations you are experiencing occur around the same time that scored events are occurring.

I tried using the oximeter (from the respiratory therapist), but I have a really hard time falling asleep and must have sensitive fingernails or something, and it hurt! So I took it off. I just ordered the CMS-50F and as soon as it comes will record my O2 levels and try to get them up on Sleepyhead.

Matt00926 wrote:Also, I agree that you should experiment with bumping up the min pressure to help keep your airway open, and make the machine a bit more proactive instead of chasing events after the fact.

Thanks Matt. Can you explain why higher min pressure might help, if I'm hardly having any apneas?

Matt00926 wrote:And finally, it seems there is a lot of information out there relating to CFS and oxygen desaturations due to many different things (infections, muscle weakness, hyperventilating on exertion, etc). Have you been given a full workup for the CFS, and are you receiving any medications to treat it/anything related to it?

Sigh. I wish I knew how to get a full work up for the ME/CFS. I have had lots of tests to rule out other illnesses, but haven't been able to find someone who can look at the whole picture -- my illness and the apnea and low oxygen -- and help me figure out possible steps. If you know of any resources or places where this is possible, please let me know!

Thanks.