Possibly dubious things my sleep doctor said. Opinions needed.

[Sleeprider]

Altitude has been an ongoing interest with me as a skier, and I have tried to help people coming from low elevations avoid altitude illness and even High Altitude pulmonary edema (HAPE), which can onset as low as 8000 feet in acclimated individuals. I appreciate your curiosity and consumption of the more technical materials I have thrown at you. If you want to read more of the Alaska Air Medical Escort it is here http://dhss.alaska.gov/dph/emergency/pag...irmed.aspx Check out Chapter 4 for good discussion on hypoxia and oxygen. There might be something useful to you there, especially building an argument for supplemental oxygen as a consequence of both altitude and breathing impairment from apnea.

[picante]

Altitude has been an ongoing interest with me as a skier, and I have tried to help people coming from low elevations avoid altitude illness and even High Altitude pulmonary edema (HAPE), which can onset as low as 8000 feet in acclimated individuals.  I appreciate your curiosity and consumption of the more technical materials I have thrown at you.  If you want to read more of the Alaska Air Medical Escort it is here http://dhss.alaska.gov/dph/emergency/pag...irmed.aspx  Check out Chapter 4 for  good discussion on hypoxia and oxygen. There might be something useful to you there, especially building an argument for supplemental oxygen as a consequence of both altitude and breathing impairment from apnea.

Thanks, I've never been terribly clear on whether I have anemia. And I haven't been able to persuade anyone to test me for low circulating blood volume, which is common in Myalgic Encephalomyelitis. I had an ejection fraction of 60%, which is reassuring, although I don't understand the relation between that and circulating blood volume.

Right now I have a pressing question for tomorrow's appointment: We are talking about bottled oxygen hooked up to the CPAP hose, correct? Not an oxygen concentrator?

BTW I did your experiment over the weekend and posted my results.

[Sleeprider]

For long-term use an oxygen concentrator is much more economical and easier to use, in addition for home use with CPAP it does not need to be portable. It is only for nighttime use. Your needs are probably about 2-3 Liters/minute which is easily met with a concentrator. Anyway, I'm not so concerned with how oxygen is delivered as much as looking at whether it it is effective. I would think any solution will initially be rented, so you and your doctor can evaluate whether this is a course that seems beneficial and should be continued or not.

I think that is what puzzles me most. For someone with no history of COPD but demonstrated hypoxia from sleep apnea, there are no draw-backs. You have a beneficial effect on your AHI using CPAP at low pressures, but don't tolerate higher pressures and are an unlikely candidate for bilevel due to your inability to use even moderate pressure. If not supplemental oxygen, what?

[picante]

If you want to read more of the Alaska Air Medical Escort it is here http://dhss.alaska.gov/dph/emergency/pag...irmed.aspx  Check out Chapter 4 for  good discussion on hypoxia and oxygen. There might be something useful to you there, especially building an argument for supplemental oxygen as a consequence of both altitude and breathing impairment from apnea.

Page 7 has a list of signs during the Deterioration or Disturbance stage of hypoxia. I have 6 of those at least daily, and 4 of them less frequently. That should help with persuading my PCP.
Shortness of breath/air hunger
Drowsiness
Headache
Difficulty with simple tasks
Diminished vision
Hot/cold flashes (I have both)

[picante]

I think that is what puzzles me most. For someone with no history of COPD but demonstrated hypoxia from sleep apnea, there are no draw-backs.  You have a beneficial effect on your AHI using CPAP at low pressures, but don't tolerate higher pressures and are an unlikely candidate for bilevel due to your inability to use even moderate pressure.  If not supplemental oxygen, what?

You're not the only one who's puzzled. All I can say is I've observed the sleep doc is not only overworked, but has an idée fixe, best translated as a single focus: sleep studies are for gauging apnea, not oxygen saturation, and you need to look at the apnea-hypopnea column, not oxygen saturation.

His concern about oxygen saturation stats for the very small time samples at 8-9-10-11 cm did not carry over to AHI stats. That's an inconsistency.

I won't conjecture about his state of mind or attitudes. I will state his unwillingness to look at 12 days of data from my oximeter and ask for my PCP's help in getting me a trial on oxygen.

I run into doctorly unwillingness all the time. The recommended tests for Myalgic Encephalomyelitis are ones they balk at. But hypoxia??? Good grief, it's not that complicated.

[Sleeprider]

You don't need a specialist for the prescription. Indeed, you don't need a specialist at all.

What is your residence elevation, and that of the sleep clinic? If dissimilar the test results may be under-estimated.

[picante]

You don't need a specialist for the prescription. Indeed, you don't need a specialist at all.

What is your residence elevation, and that of the sleep clinic?  If dissimilar the test results may be under-estimated.

Our house and the clinic are at 4200 feet. We are on the higher side of town, but it's not a significant difference.

I just had my first night with the cervical collar, which is too loose, but if I'm on my side and push the loose part to the back, my chin doesn't fall behind it. On my L side it was OK, then I switched to the R side and got a neck spasm.
First session AHI: 5.94 on L side
Second session AHI: 30.89 on R side
[attachment=9752]           [attachment=9753]

The increase in OAs is astounding, but I know I wasn't really getting back to sleep at first, just drifting in and out for a while. 
Total CPAP time was only 4 hours; I set the alarm because I want to be able to eat today. I took one Zantac during the night to see if it would help with GERD/sinus inflammation. It didn't. I was super stuffy, with one nostril completely shut.

Does the machine recognize super constricted nasal passages as a "clear airway"? My flow limitation chart is around zero for that time. Does that just mean my mouth was open? I know it can open a little with that cervical collar on, because I woke up once with it open.

A side note: I suspect that these nights with high CAs are connected with my PENE (post-exertional neuro-exhaustion). I had a bit of exertion yesterday, just around the house. If that turns out to be the case, then it's no wonder I have neuro-exhaustion the next day with a big symptom flare.

[Sleeprider]

This was all central and CPAP is n ot going to resolve it anyway. The collar did its job. The problem here is you're stuck at a minute vent of about 3-L/min for a long time, and that may not adequately ventilate you. What were your impressions/feelings about last night?

[picante]

This was all central and CPAP is n ot going to resolve it anyway. The collar did its job. The problem here is you're stuck at a minute vent of about 3-L/min for a long time, and that may not adequately ventilate you.  What were your impressions/feelings about last night?

The collar was comfortable enough to wear all night, but I do need to order a smaller one, which means a different brand. The height seems about right: any lower, and my chin won't touch it unless I bend my neck forward. 

I've been having all the hypoxia symptoms except the headache: air hunger, drowsiness, difficulty keeping on track with simple stuff, blurry vision, and hot/cold flashes  -- mostly cold today. Oximetry stats were horrible, and coincided with clusters of CAs: 21.8 minutes at less than 89%, adjusted index 18.2. 

I had to get through my doctor's appointment in that state. Got back an hour ago, utterly thrashed, because it was difficult. My PCP wanted me to answer a lot of questions about all the docs and tests I got bounced around to in the last year, and I had all that on paper for her, but she wouldn't look at it. Then I told her briefly about my aerophagia and CPAP + GERD feedback loop, and asked for a trial on oxygen. She wanted to try other things: more pulmonary testing, a counselor, a dietician to help with gaining weight.

She asked how I felt about counseling. Me: "Counseling is great! If you have the energy and the air to talk!"

I lay down and pleaded with her. "The air hunger goes away when the CPAP is working well. It comes back when I'm in the apnea/GERD feedback loop. Oxygen has been the obvious thing to try, for the last month! The sleep doc won't even look at my oximetry stats. He's thrown it back in my lap." I was pretty distressed.

She gave me a prescription for 2L oxygen, I made the appointment to see the clinic's dietician, and then I lay down in the car a few minutes. The home oxygen office is right in the neighborhood. I stopped in and asked "What now?" They told me that they would talk to the issuing doctor and gather up the documentation to send to my insurance -- sleep studies, nighttime oximetry --, so I left my stack of 17 nights of oximetry reports I had printed up. No one else wants to see them -- why not leave them for the documentation person? Then the oxygen set-up would be done at my house by the guy who runs around doing that.

I'm just afraid they'll contact the sleep doc. I hope not!! Anyway, I came home feeling desperate and depressed -- partly from hypoxia, no doubt.

Thanks for being here, guys.

[Sleeprider]

It sounds like progress, but we will have to wait and see. I'd like to see you at least get a trial on the 2-L/min Oxygen bleed. I think it will make a big difference in how you feel. It might be equally good on CPAP or by simple canula delivery, espcecially with the soft collar. As long as the obstruction is dealt with by the collar, the centrals should be minimal.