Family member thinks my SA is a scam??

[sleepadventurer]

Hi everyone,

First - I appreciate all of the feedback I've received in my other thread. It has helped change my life by refining my SA therapy using Oscar.

Unfortunately I have another problem:

• Background: After daily fatigue for years among other SA symptoms, I took a Lofta take home test 1 month ago (using the WatchPAT 1) and received a diagnosis of moderate sleep apnea (please see attached results image) and I have been using an AirSense 11 every night since then (currently 11-13 pressure with EPR 3 - fine-tuned over the month with Oscar showing I need about 12 pressure to manage my hypopneas/apneas) I am now sleeping quite well with a cervical collar added.
  
  
• A family member of mine who is important to me thinks I don't have sleep apnea. They do not want to pay for the Lofta take home test ($200) so they ordered a cheaper Amazon O2 sensor to track their O2 during the night and they have had some 3% and 4% dips but they have unearthed studies saying that oxygen levels anywhere in the 90's is fine and have concluded from that that they (and I) do not have sleep apnea because our average O2 levels are 92 degrees (with max dip down to 86).
  
• I disagree with this method of diagnosis - and have recommended that they at least take a Lofta at home test (which I know has limitations) to confirm their AHI
  
• My disagreement is based on my limited understanding is that O2 is only one of a few components of SA, the other main one being sleep disturbances (hypop/apneas) that awaken you constantly to prevent deep, restful (REM mostly) sleep to feel rested the next day.
  
• It is pretty clear that my sleep apnea therapy has helped me in many ways, although this person's research has given me some doubt as to the validity of the Lofta test which states that average O2 levels need to be 97+
  
  Questions:
  
• What does everyone think of the Lofta take home test with WatchPAT 1? 
  
• Who thinks I truly do have sleep apnea (I feel silly even asking this)? Shouldn't my CPAP alone prove this quickly? (See attached images as example Oscar data from my last month)
  
• What is needed to obtain an accurate "enough" diagnosis? (e.g., Level 1,2,3 sleep test?)
  
• Should I somehow re-test? (e.g., level 1 (lab) or 2 test, run my CPAP at 0/low pressure and see how bad the hypop/apneas are?)
  

I feel like I may be way overdoing / overthinking this here, but I would really love some advice to be able to better approach this conversation with this person. I care about them and their health, as well as mine. I know all of you can relate.

Thank you in advance. 

- Sleep Adventurer

[Gideon]

My OSCAR charts show that I definitely do not have sleep apnea, at least per your families thinking. My AHI is 0-1.5 with some variance.

IMHO your family is taking a nice cruise down that Egyptian river, you know, the one called "de-Nile".

My first sleep test had an AHI at 97 if I recall correctly. I can assure you that I didn't have apnea before that, yes I was on that same river cruise your family was on. At that time I was thankful for the rumble strips on Lansings main Street for waking me up. Oh, your familiar with that road, and you say there are no rumble strips. You are correct, I was actually)y driving across the driveways with no knowledge of that fact. Why? That's how bad my sleep apnea was, and still is without CPAP. Granted it may take a few days to become that sleep deprived.

The only way to prove you don't have sleep apnea is to take another diagnostic sleep test.

Mention that you know that your lofta test is not always accurate, but kif that is the case it's results, as a minimum, say you should confirm that diagnosis with a type 1 inlab PSG, the gold standard for sleep apnea diagnosis at a cost of $1500-$5000+ depending on billing and insurance. I'd agree to abide by the results of that test. To prep yourself I'd not use a CPAP for a week prior, just to regain a noncpap normal to prove you don't have sleep apnea.

The only way to prove you don't have apnea is a diagnostic sleep test. I know of no other way to prove it.

I believe that you have sleep apnea. Where Lofta becomes more questionable is in the low mild area.

[robbob2112]

I have an O2 ring I wear nightly to tract the few things it supplies.  But the O2 ring doesn't have anything to do with how well you are breathing or if you are waking at night from arousal.

Pre-diagnoses I had the O2 ring and based on that I have supplemental oxygen and that brought my oxygen up to low90s.  WITH my oxygen in the low 90s I was diagnosed with sever apnea with 65 arousal per hour.  Of those 80% are central apnea.  Now I have an ASV machine and with it + 2L/m O2 my typical oxygen level is high 90s.  The black bags under my eyes has disappeared and most days I wake without  being tired and I no longer want to fall asleep mid-day.

Before my machine was given to me I think I had either stopped dreaming all together or it was vastly reduced.  Now I usually wake remembering my last dream orI have an arousal event and wake for a moment in the night and was mid-dream.

So, unequivocally just having proper oxygen level does NOT mean you don't have apnea.  You would need something to monitor breathing and sleep level via electrodes on the skin.  Over time I've learned to see where I hit REM sleep looking at my graphs in Oscar, but that is still just a guess.  But, on a night with no events and lots of dreams I can see my breathing pattern change and go very shallow based on the tidal volume levels and other indicators.

Recently Viatom has a trial for advanced reporting that is guessing at REM sleep based on O2 level and pulse variability.  But they have a big not that it is only a guess.

and thumbs up to what gideon said - it is worth taking an overnight in lab PSG test.  And I was on the De-nile cruise as well and now I am certain I have had it 20+ years without knowing it

[BoxcarPete]

Oxygen isn't everything. Take a look at this excerpt from my in-lab PSG. Show it to your family member. Note that the height of the bars indicates the duration of the event, with the longest hypopnea being nearly a minute long. Make them tell you with a straight face, dead in the eye, that this man has no problems with his sleep because oxygen never desaturated below 90% and see what they say.

My APAP machine helps me transition through sleep stages without being disturbed or awoken, and now I don't crash and burn at 4 pm with an overwhelming desire to lay down and take a nap.

Best of luck to you.

   

[SarcasticDave94]

Yes, Denial from your family member. Saying you don't have apnea, and extended to your test and diagnosis, because they don't believe it, is very flawed logic, much like someone that's saying since they don't have apnea, they don't feel your symptoms, etc., then you also don't have it.

I'm not buying their flawed logic.

I have no opinion on the Lofta test, but others that have used it were likely correctly diagnosed, as I believe you were.

Take note of this aspect, your CPAP is a therapy device and you only benefit by using. It's not a cure.

An O2 sensor is not an apnea test by itself. That, big surprise, checks oxygen levels. No, sorry I'm throwing the bogus flag.

[Deborah K.]

If it were me I would skip any further testing. Your sleep study says you have apnea and you are now sleeping well. Why spend lots of money and go through the annoyance of another sleep study to please some cranky relative?

[robbob2112]

I would think the PSG would indicate proper levels to set the machine at better than the LOFTA test does.  

My wife is going back for a titration study after the split-night (they were out of supplemental O2) they originally gave her apnea and they started her on a simple pap machine she won't use.  The pumanologist thinks she probably has a percentage of central apnea and should be on a bipap, but he doesn't want to step on the toes of the original dr that refereed her for a lung function test.

[SarcasticDave94]

PS like Deborah K. says, more testing not required unless you're not treated well currently. More testing IMO, just say no.

[SarcasticDave94]

The PSG sleep study that isn't split into titration as well doesn't have pressure suggestions, of which many members here prove they get wrong pretty frequently. It's a one night snapshot. Self titration can go on as long as needed for FREE .

[BoxcarPete]

My understanding is that sleepadventurer is all set with his own situation, but advocating for a family member to get checked out as well. The best thing to do is get a PSG in lab, but I understand why someone would not want to do that. I don't think many of the home tests do very well with sleep phase, which in my opinion is very important if you aren't noticing oxygen desaturations because it means the issue might be with disturbance in REM, which is what I had.

The best thing you can do is to help them come around on their own, show them how life-changing good sleep is for you now and steer them towards wanting it for themselves.