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Intro and advice request...
#1
Intro and advice request...
Hi,
I'm a new user - recently diagnosed w/ moderate obstructive sleep apnea, and still waiting to get word from the Doctors about prescriptions and so forth...

I am a 62 yr. old guy, and experienced a spinal cord injury about 10 years ago that left me a T-5 AIS-B paraplegic (the injury level is about the bottom of my rib cage, and I have somewhat odd sensation below my level, but no motor function) 

This has serious impacts on my sleep in and of itself, as it requires me to wake up far more and exert a lot of effort to turn over than it does for an AB....  However in 20/20 hindsight I think I probably have had some level of apnea for far longer, as I have always had a problem with falling asleep during meetings and other activities that didn't need a lot of attention, despite consuming plenty of Coffee Coffee but I had always just blamed it on not enough time in bed (also a problem)

Lately the sleepiness had gotten worse, particularly after eating, so I mentioned it to my PCP at my annual physical - and he suggested doing a sleep study.... The tech when I did the first study said I was showing apneas but to late to start doing the trials on a CPAP machine...  The doctor gave official diagnosis of moderate apnea (I can do a copy of the test report if it would help?) and we had a lengthy discussion about the options for treatment...  My long-time significant other has been on a CPAP for many years, and while her getting it probably saved our relationship, (Funny story about that, will share some other time) after watching her, I really didn't want to become a hose-head... Bigwink  However I found the stuff about surgery and that electric zap implant thing even scarier, and according to the doctor the dental appliances reportedly don't well on side-sleepers - and I have been sleeping on my side ever since I got hurt, as it gives my butt a chance to recover from sitting in a wheelchair all day...
So I had a second study on March 3rd, where they tried a bunch of different masks on me, and did a bunch of different pressure settings...  The tech said I'd be getting the results in 10-15 days, but as we all know to well, eeew this COVID-19 mess started getting really nasty (at least here in MA) and I suspect that the doctor is way overly busy with dealing with patients that have far more serious breathing issues.... Okay   It has now been a month with no word - and I won't be terribly surprised if I don't hear anything until the curve has past its peak....  In the meantime the GF and I are doing the stay home and hide routine.
So I've been doing more research and am trying to learn as much about my options as much as I can.  I'm also a long time Free Software advocate / FSF member / GNU-Linux user, and first learned about Sleepyhead from a Verge article on the general problem of proprietary software in medical equipment - which I am well acquainted with from the issues of dealing with the programming on my wheelchair controller (makes DME CPAP programming look wonderful)
So I am going to be looking for advice about what sort of machine to demand and also probably advice on masks...
I don't know what I will end up with for a prescription, but as best I could understand what the tech was doing in the study, I think we ended up with some sort of bi-level setting on the machine.   My nose usually gets congested at night so I end up breathing through my mouth, and while we tried a couple of different nasal pillow and prong masks, I found them both uncomfortable and also felt they weren't giving me enough air.  We ended up with a couple of full face masks which seemed better, but had difficulty getting them to seal well....  Part of the seal problem is that I haven't shaved in over 30 years, (and am NOT about to start!) so I have plenty of face fungus...  Any mask technologies that are particularly good with sealing against facial hair?
I've probably gone on to long - your turn....

ex-Gooserider
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#2
RE: Intro and advice request...
G'day Gooserider. Welcome to Apnea Board.

As a tech person yourself, you'll understand that we live for our data. Two most important things:
  1. Post a copy of your sleep study report(s). We need to see the full report, not just the summary. The charts and tables often contain important details that somehow get missed in the written summary. Make sure to redact any personal ID.
  2. Get hold of a copy of OSCAR, the new and improved CPAP analysis & reporting software that takes up where SleepyHead left off. The various links in my signature will get you started.

It's probably too early to talk about specific machines until we see the test reports. However, most of our members find that Resmed machines are more comfortable and more efficacious than Philips Respironics. There are many other brands out there, but those are the market leaders, the ones people are most familiar with, and the ones with the best OSCAR support.

Given the current health system situation world-wide you might consider using an on-line supplier without waiting for the prescription. As you already have both a diagnostic and titration sleep test report, many of the suppliers have in-house or "tame" medics that can provide a prescription for you. If your apnea is reasonably straight forward you'll end up managing it yourself - many of us here haven't seen a sleep doctor in years.

Good to have you on board.
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#3
RE: Intro and advice request...
Welcome to the forum.
On masks read the Mask primer.see my signature..
Look at supplier#1 (see the supplier list in the black banner) as they list mask popularity, a reasonable assumption is that popular masks have fewer issues.
There are other solutions to mouth breathing other than a full face mask.  It took me months to master the tongue technique.
My full face backup mask is the Amara view, you see it in my Avatar, that enough beard for you.  It seals, on me just below the lower lip before there is too much hair.

My go-to mask is the p10 pillow, even when I'm severely contested.  

The trouble is not with the masks, they are all good, the trouble is with our faces, for some odd reason they are all different.  Finding the right mask for you is the hardest part of CPAP therapy.  It takes trying them on, under pressure and in sleeping position.  Your face changes shape as gravity pulls it when lying down and between your back and side. And changes more when it relaxes when you fall asleep.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: Intro and advice request...
Welcome to Apnea Board Gooserider. Both DeepBreathing and bonjour have offered great advice, so nothing to add from me. Keep us posted when you progress to getting the sleep study info. And best wishes to you during the virus lockdown.

Coffee
Dave

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Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Intro and advice request...
Thanks for the warm welcome! 

I have been getting ahead of some of your suggestions, which are good - as I try to find answers in stuff that has already been posted rather than making helpful folks repeat the same things over and over...  (I'm on the helpful folks side on other boards... Cool )


The only study I have results for is the initial study where they said I had apnea.  I am attaching it at the end of this message (I hope)...  It was a minor hassle to redact the personal info, as it was a .PDF... 

I had a discussion with the doctor who seemed knowledgeable - his eval from that visit was -

Quote:Impression:
xxxxxxxx is a 62 y.o. male  who presents with obstructive sleep apnea complicated by non-restorative sleep, chronic sleep fragmentation, and nocturnal hypoxemia.
 
Most of this 40 minute office visit (>50%) dedicated to face-to-face education/counseling regarding the pathophysiology, diagnosis, and treatment of sleep apnea.  His respiratory events are concentrated mostly during REM sleep and result in severe desaturations during that sleep stage.  Based on symptoms and severity, he would benefit from PAP therapy.  Given sleep apnea persists while non-supine and is REM dominant, I do not think an oral appliance will be effective but that would be a reasonable alternative.
 
Beard may complicate mask fit but shaving is out of the question.
 
Recommendations & Plan:
- Repeat sleep study for CPAP titration
- Based on repeat PSG, we can discuss Rx
 

If any one is looking for a fairly easy way to make edits on a .PDF, I would suggest the "PDF Zorro" website - it is an online tool, that you upload a file to, make changes and then download the changed file....  It offers a pretty wide range of tools, including an 'eraser' and various drawing tools, etc...  At least the claim is that it doesn't keep any records, though the site tries to load java from Google according to NoScript (but runs fine without letting it) It isn't an 'apnea related' site, but might be worth listing as a 'tool' resource....

I don't know if the study I have attached is enough to get any sort of prescription, since it has no data based on using a CPAP.  The second titration study where they had me on a CPAP is the one I am waiting on results for....  I think it is a safe bet that when I get those results I will have a prescription along with it...  I am also reluctant to go to an outside provider as I doubt that my insurance (Mass Health (aka Medicaid)) would cover it w/o going through all their hoops first...


I have downloaded OSCAR (and Sleepyhead) but haven't tried installing them yet, as I don't see much point until I have a machine that can work with it....  I definitely will insist on one of the machines supported by OSCAR...  I have not paid as much attention to the mask YET as I figure the machine is the more important concern, but the mask list is on my 'to be read' pile...

While I don't have any official results from the second study, my sleep-fogged recollection is that the tech found bi-level worked better, and I ended up with a bag containing about half the masks that we tried, the ones that seemed to work best -
I got the following goodies:
1. A long hose w/ rubber ends - I assume this goes between the machine and whatever mask I use...
2. A Fisher & Paykel Simplus, Medium size
3. A Philips Respironics Wisp X1L size
4. A Resmed  Airfit N30 Medium size

Hopefully this will help...

ex-Gooserider


Attached Files
.pdf   Sleep-study_1-2019-redact.pdf (Size: 405.61 KB / Downloads: 28)
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#6
RE: Intro and advice request...
A couple of things stand out in the test:
  1. No central apnea. This is good, and simplifies things.
  2. Moderate obstructive apnea based almost entirely on hypopneas. "Moderate" is a function of how many events, you had, not how badly they affect you.
  3. Your maximum event duration was very long - hypopnea up to 159 seconds and apnea up to 42 seconds. This is not good for you.
  4. Your minimum oxygen saturation of 70% also won't do you any good. 70% while awake?
  5. There is some clustering of events which might point to positional apnea. Read this: http://www.apneaboard.com/wiki/index.php...onal_Apnea and this: http://www.apneaboard.com/wiki/index.php...cal_Collar
It will be interesting to see the titration study results, but I expect the treatment will be fairly straightforward. It will be a matter of getting a suitable pressure range then fine tuning the other parameters to optimise comfort and efficacy. OSCAR will be your friend.

The mask is likely to be the hardest thing to get right. You have a good cross section to play with, but until you try them under pressure in your sleeping position you won't know which works best for you. Read this: http://www.apneaboard.com/wiki/index.php/Mask_Primer

By the way, you don't need both OSCAR and SleepyHead - Oscar is the replacement for SleepyHead.
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#7
RE: Intro and advice request...
I strongly recommend that you request a ResMed Aircurve 10 VAuto machine. Your physician may want to provide you with a Philips Respironics machine, or some other brand, but the ResMed machine will do a better job of breathing with you, and I believe its algorithms will be more helpful in resolving your hypopneas.

The experts may want to weigh in on this, since I am not an expert!
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#8
RE: Intro and advice request...
I had read the stuff on the cervical collar, and it is interesting....  Is there any useful way to try it and see if it does anything without having a machine?  It sounds like an out-of-pocket thing, so I could potentially try it while waiting for the titration study results but not sure it's worth while if there isn't a way to tell if it's working....

I did have one thought - when I was looking at possible alternatives, one that I considered were the 'dental appliances' that are supposed to work by moving the lower jaw forward, holding the airway open....  The descriptions given for how the appliances work sounded very similar to the discussion about how the cervical collar is supposed to work...  It seems like this gives backup to the idea...  (The sleep doctor tells me that the dental appliances are not effective for side sleepers according to the studies he has seen)

ex-Gooserider
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#9
RE: Intro and advice request...
Cervical collars are only about $10, so worth trialling even to see how you feel whilst waiting for your CPAP to arrive.

Here is my thinking: If part of the obstruction is tongue collapse, then potentially a collar will limit your chin tuck. When you chin tuck, your jaw drops back and obstructions can happen.

Let us know what you do.
D.
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#10
RE: Intro and advice request...
I've been doing the 'hide at home thing' but may try getting one next time I need to go out to do other errands...  (or possibly do the Amazon thing...)
One other data point that does lend some possible support to the positional theory (or maybe not Huh ) is that I will often fall asleep in my power chair.  The chair has partial recline that lets the back down to about 45* or so.  Since I also can't get my legs up to level I am usually sleeping on my back in a more or less 'Lazy-Boy' recliner position...  I have had a few people comment that when I am doing this I snore loudly and gasp - I think I may even have woken myself up...  

ex-Gooserider
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