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How to get help when you don't know where to get it from?
#11
RE: How to get help when you don't know where to get it from?
What did he mean by "mild"?

Call the doc office and request the sleep report be sent to her. Don't let them say "it is a bunch of tech data you would never understand". Tell them you know the sleep report is shorter and she is allowed a copy of it under HIPPA.

Go to one doc. Just one. Her GP perhaps. But first, make a time line of everything that has happened, like you have here. Get all the reports from the docs she has seen, including the sleep report and the names/dosages of meds. Write a list of dates of when what doc was seen where. Whatever format you need so it is easy to read and follow for both the two of you and her GP. Lay it out for the doc, just one doc. Don't let him/her say it is anxiety. That has been ruled out. Using a CPAP as a way to further rule things out is not too difficult to ask for.

If even the GP is weird, then you can purchase a gently used APAP from Supplier #2. The prices for the S9 Autoset are dropping since the A10 series came out. If you can afford it, go ahead and get a gently used or open box A10 Autoset. Does she sleep with her mouth open or closed? If closed, look into a good, easy to use nasal pillows mask. They are the easiest to adjust to due to low leaks. I recommend the Nuance, Swift, or Pilaro for her to try.

Download Sleepyhead. Have her use the machine "wide open" (4-20) for a week. Then look at the data. Share it here with us and we can help.
PaulaO

Take a deep breath and count to zen.




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#12
RE: How to get help when you don't know where to get it from?
Paula02,

Thank you for your response. I'm not exactly sure what he meant by "mild" but I'll grab the results that my girlfriend received and post it on here to see what can be interpreted of it. 

We've recently moved in together, in a new area, and she doesn't have a primary GP but she is seeing another sleep doctor this coming Monday. I really like documenting everything into a timeline of events, hopefully this can be of some help when she goes. I'll sit down with her and come up with a list. I've always thought that would've been an immediate response from doctors up to this point, given the terrible experiences she's been having from sleep deprivation but it almost seems like either the doctors don't care or they don't believe her. This is something I will also relay to her.

I'm trying to work with her to purchase some items online but she has been very cautious about her journey and wants to make sure that this is an absolute last resort because she realizes this is a bit costly and doesn't want either of us to invest into this unless we have to. In the event that we do purchase a machine and do a DIY treatment, I will look into your suggested link.

I know that there's different sleep disorders to consider other than OSA and I'm not sure how we would go about self treatment if, let's say, she was dealing with CSA or UARS. UARS hasn't occurred to me until just yesterday because I've putting all of my energy into researching OSA and CSA. If it were likely that UARS is the culprit, would we still go with a CPAP machine? I read up on the Autoset models and saw that the machine actually reduces air pressure upon the user exhaling, this sounds like it'd be just the right kind of tool for someone who has short breath upon inhale.
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#13
RE: How to get help when you don't know where to get it from?
Permit me to add that I request and receive copies of all medical reports -- including blood work.
They are available to the patient by right under HIPPA.  
Electronic Medical Records are not used everywhere (I despise them anyway).
I hand carry records to any new physician I see; plus I act as the conduit between physicians as to what I think will be relevant to them.

Kind regards,  Mongo

edit:
(07-12-2017, 08:21 PM)ohnjay Wrote: this sounds like it'd be just the right kind of tool for someone who has short breath upon inhale.
We will be able to quantify how shallow by her Tidal Volume if she gets a machine.
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#14
RE: How to get help when you don't know where to get it from?
I think the APAPs work to treat UARS. The good thing about the APAPs is they can also be CPAPs, set to a constant pressure vs a range.

As long as neither of you smoke, the machine you get should be resellable to Supplier #2 or even "black market" Craigslist. So it is an investment, yes, but worth it because this is her health. As she is discovering, sleep is just not a night issue. It is a systemic issue. From brain to lungs to heart, all are affected by sleep apnea.

There are a lot of folks on here with Mild sleep apnea whose lives changed for the better once they got the xPAP.
PaulaO

Take a deep breath and count to zen.




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