Newbie -- advice re: O2 levels

[Matt00926]

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.

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?

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.

Well for right now we don't know what type of events are making up your AHI, and the duration of said events. I have a gut feeling that with such a low treated AHI, it doesn't explain the reason for the severity and length of your time spent with lower than ideal oxygen saturation. But we can always see if we can improve things with your therapy, to at least help somewhat. If we prevent a few of those events from happening, maybe that will lessen some of the time that you spend with lower levels of oxygen saturation.

I will say I don't know much about CFS/ME, but from what I do know it's sort of a frustrating topic in the medical community, as there are no specific tests you run - it's basically a diagnosis of exclusion. You kind of just treat the symptoms that arise as there are no targeted medications for CFS itself.

Where do you live? You may be able to research to find a physician and/or medical clinic that specializes in CFS/ME. You just need to be cautious because honestly not much is known about CFS in the medical world it seems (from a bit of looking on Google). A lot of places seem to be "holistic doctors" so I don't know how legit that is. I'd be happy to look a bit for you if you tell me the area you're in.

[ChicagoGranny]

A lot of places seem to be "holistic doctors" so I don't know how legit that is.

Search here to find them - https://americanloons.blogspot.com/

[kikala]

Thanks. Just to clarify -- I actually have done a lot of research on ME/CFS and have a pretty good doctor -- I just haven't been able to find a doctor who knows about ME/CFS and O2 desaturations. Likely because there just hasn't been enough research.

For now, I'll stick to the O2, ask my doctor about upping the pressure, and wait until the CMS-50F comes so I can record my oxygen levels overnight.

[Mogy]

Hi Kikala,
I went through something similar when diagnosed with OSA a year ago.
My AHI was similar to yours, and my oxygen was low for the whole sleep test, below 90%. The report said that the OSA didn't acount for all of the desaturation and I should see a pulmonologist.
On APAP my oxygen went up a small amount but it was still a problem.
I have OSA and GERD and was overweight. I don't have ME.
GERD and COPD are linked and they are under diagnosed as well as OSA.
At this link I outline what I did to improve my oxygen level-starting at post #3.
http://www.sleepapneagroup.com/threads/ ... /#post-999

Hope this helps.

[kikala]

Thanks Mogy, I'm glad to hear I'm not the only one! I do have a bit of GERD, but nothing serious, so I don't think that's a contributor. I have a feeling my pulmonary function test will be normal and no one will really know why my oxygen levels are so low at night....

[USMCVet]

I don't have any concrete answers but looks like I am getting off supplemental oxygen. I have an auto machine set from 6 to 20. Highest I ever seen it go is 11. Just got home from titration study and looks like 15 is my magic number to maintain oxygen around 93%.

[cautiousofcpap]

I have just been diagnosed as having mild OSA and I am hypertensive. my BMI is 22 and I weigh 185 at 6’4” (My weight and BMI has been a lifelong work)! My doctor is recommending CPAP.

So I started doing some research and one of the things I found is a MD magazine article from February 2, 2015 where a meta-analysis of over 25 well-designed studies show that there is a significant statisticsl connection between CPAP use and weight gain. The conclusion of the article is that weight gain and CPAP are very closely tied. The author of the study went on to say he is personally disappointed in the findings because it was so logical that having more energy from better sleep would help his patients lose weight.

http//www.mdmag.com/journals/family-practicer ... eight-gain

When I did a web search on just wait gain in CPAP I find overwhelming evidence that it is not us, it is the therapy “helping” us to gain weight.

I am a little disappointed that the practitioners in this field are not more cognizant/forthcoming of what I so easily found with a simple search.

So unless you were just consuming prodigious amounts of carbs and sugar while sitting on the couch, you can put away guilt And feelings of inadequacy. It has something to do with CPAP itself. They do not seem to have any idea why.

[USMCVet]

The article said none of the studies were actually done to see if weight gain happened because of using CPAP and that gains were small and it might be a good idea to do an actual study to see if there is a relationship between CPAP use and increases in weight and BMI

[chunkyfrog]

Apnea contributes to metabolic disorders, like diabetes, and the result is permanent.
The weight gain is resistant to reversal, and treatment needs
to be individualized in order to work.
No one diet works for everyone--often not anyone at all.
If the eat less/move more mantra does not work, or cannot be done,
it becomes necessary to think outside of the box and determine what works.

[ajack]

The doctors,'eat less move more' is probably the worse thing you are going to hear. You are probably overweight because of insulin and leptin resistance.
insulin tells your body to keep storing fat and stops you accessing your own body fat. leptin doesn't tell you when you have eaten enough and makes you save energy by slowing you down (sitting you on the couch)

google keto ot LCHF

This gives a simple overview to how it works for me. The more carbs I eat, the more carbs I want. They don’t give up easy and it’s biochemical
https://www.youtube.com/watch?v=cEayi6I ... D8&index=6

more info on low carb
http://www.dietdoctor.com/low-carb

what to expect the first week, besides being hungry for the first 2 days, then it stops
https://www.verywell.com/getting-throug ... ek-2242037

you may not need to go this low, but it will help you see what a meal plan is.
http://au.atkins.com/new-atkins/the-pro ... ction.html

The hardest part is overcoming the low fat dogma for the last 40 years.
https://www.verywell.com/how-to-overcom ... ia-2242208

[ChicagoGranny]

cautiousofcpap

The meta-analysis referred to in the article is here - https://www.ncbi.nlm.nih.gov/pubmed/25432944

Here are some problems with the meta-analysis.

All studies enrolled mainly overweight and obese patients.

People who are already overweight or obese are likely to gain weight even if they don't use CPAP. You are not overweight, but you infer you have worked hard to maintain a normal weight. You might not have had to work so hard had you been using CPAP.

But, there is another big problem with the study:

Meta-regression analyses (includes) ... CPAP compliance ...

It includes CPAP compliance, but it does not include CPAP efficacy. It would seem certain that many of the patients are running a CPAP process that is not up to par with any gold standard for effectiveness. Too many doctors look only at the CPAP compliance of their patients and hardly consider the effectiveness.

But, you found your way here and can learn to have a highly effective CPAP process.

Methinks you have worked hard to find a flimsy excuse not to use CPAP. Instead, why not put a little effort into developing a good CPAP process, and avoiding the disastrous effects of untreated sleep apnea?

[greatunclebill]

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.

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!

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

here is an excellent forum that includes a separate forum on cfs. It's a good place with alot of knowledgeable people. https://www.healingwell.com/community/default.aspx

[Mogy]

The ketogenic diet is a good one but it is not for everyone. Many people with OSA have GERD as well. GERD and a high fat diet don't go well together as fat is a trigger for reflux in many people.
There are a number of good diets, find one that works for you and go with it.
My diet is a fairly normal diet with reduced calories and more exercise. It works well for me.
Losing weight was one of the main things that I did to improve my oxygen levels.

[ajack]

If you google LCHF and gerd, you may find it can be caused by carbs. I know my gerd settled on a low carb high fat diet. It costs nothing to find out. For years, I also raised the head of the bed on bricks 4-6", so I slept on a slope, this helped.

I'm a bit of a born again on a soap box, when it comes to keto/lchf, it has really made a difference to my life.