Newly diagnosed severe sleep apnea

[DarciWantsToSleep]

Hello,

After going to a sleep study last week and never feeling rested for the past few years, I was diagnosed today with severe sleep apnea. My problem is, they told me that I stopped breathing 80 times per hour. At best, I a am sleeping for 40 seconds at a time!  The CPAP provider that my doctor hooked me up with said that it will take 7-10 business days to set up the paperwork and since my insurance company requires pre-approval, another 7-10 business days before they will call me too make an appointment for my CPAP!

How do I sleep without worrying until then? I called my insurance company and they are trying to expedite the process. I don't even want to tell my husband how bad it is so that he doesn't lose sleep. How do you cope? I know I am tired enough to sleep, but how can I not worry?

[mesenteria]

You have made it this far, Friend, and you'll probably be around for a good while yet.  Especially once you start your journey with PAP therapy.

Relax, you're in good company here (I'm in the bottom end of the severe category), and there are many good folk who will be attentive to you and who will try to help to guide you through the first bit of tweaking.

You have a bit of a row to hoe over the next eight weeks.  Take it a day at a time.  It's a learning curve thing, and there's a lot of it.  It goes okay for the heavy, heavy, majority of us.  You'll be right in the middle of the bell curve.

Welcome to the forum!

Edit [added]- Oh, I see we're Elite mates!   I have the same model because my lab study said I did fine with straight CPAP.

In my case, I have a problem with mouth leaks.  I elected to try a nasal mask first, and then stuck with it, but I open my lips and get a blast of air coming out just as I am falling asleep.  There are ways to deal with that...IF...it happens to you.  Cervical collars, the foam kind, or chin straps, or...EEK!...surgical tape.  We can talk about that later if it comes up, but I wanted to alert you to an example of things you'll learn, maybe, as you go through your first and subsequent nights.

[SarcasticDave94]

Personally, I'd keep the companion informed, but it's your choice.

Yes, you now have the diagnosis. But you think apnea has been present for a few years. While I'm not saying NOT to worry, just don't go extremely concerned. You'll have enough soon enough to get extremely concerned and frustrated over. DME caused headaches will soon be a nice little nightmare.

BTW my apnea went undiagnosed for about 15 or so years and mine was about 75 or so AHI when it was initially diagnosed.

No pun, take a little breather and educate yourself on what your treatment will be like. Research possible machines etc. Get your mind wrapped around things you actually can control and it'll help.

[Fats Drywaller]

Welcome to AB. As mesenteria said, you've found the right place. But I'm afeared that the fact by itself is cold comfort, kinda sorta, until you have the machine & mask to relieve your symptoms. That waiting time is a bummer, I know. I went through some of that last winter/spring.

By the way, an AHI of 80 might sound terrible at first, but some of us (including me) have had untreated AHIs over 100, so take heart that it's not so unusual.

About sleeping and not worrying, I don't have any good solution unless you happen to be rich, or lucky enough to be sort of effectively like that for the time being, in which case you could buy a machine & mask from an Internet retailer and begin using CPAP sooner than you otherwise would. That's what I did, all those months ago (I'm not rich but was temporarily flush at the time), and it was worth it. It's always good to have a spare machine anyway, if you can afford it, so the one that you buy would not be instead of the one you're getting via insurance; it'd be in addition to it. See the Supplier List via the link at the top of the web page, and if you want to economize, it would be good to buy a "gently used" machine (small number of total run hours) from Supplier #2, which (unusually among the CPAP suppliers) sells those in addition to new units. You'll need a copy of your CPAP prescription from your doctor, which you should have anyway, because buying a machine or a mask requires the Rx in the U.S. (unless you buy from an individual via craigslist or ebay or letgo), and at the very least you will want to buy masks over the next years if not months. If you weren't given that Rx paper or PDF, then definitely request it ASAP (and tell the doc or nurse that you need it stat!), because you're entitled to it ... that's the law in the U.S. according to HIPAA, and it's good sense anyway. If you have only a paper copy, scan that to get a PDF or an image file, and that's what you'll e-mail to any online retailer that requires it. If you need to request it from the doc, then at the same time request a complete, official copy of your sleep study, which you're also entitled to under HIPAA; that'll be important to have also, eventually.

If buying a machine on your own is feasible for you, then say so and I or someone else will post recommendations of what machines to look for. It's actually pretty simple. There's also a good explanation here: "Machine Choices" (in the AB wiki), although that might at first glance make it sound more complex than it is. If you like gadgets and high-tech stuff, then it's an adventure; but if you don't, it can still be easy anyway because all the research has been done for you.

It's good to keep your profile/sidebar updated with pressure from Rx, machine make & model when you know it, and mask make & model ditto.

As for the psychological stuff, I can't think of anything helpful other than "Hang in there, because things will definitely get better." As Sar-Dave said (or implied), living with untreated sleep apnea for a little while longer is not an immediate matter of life & death, fortunately.

[Fats Drywaller]

P.S. about the worrying:  Now that I think about it, that one is not so difficult in theory, because you have found Apnea Board and you have a machine & mask in the pipeline, so everyone here can say, sincerely, that your sleep-apnea troubles are on the way to being over, solved, history.  Now, if you can convince yourself of that, maybe you can stop the worrying or at least put it in abeyance for a while.  Do spend some time reading the "Important Threads" in the AB main forum, especially "New to apnea?  Helpful tips", and follow the links from there to anything that is relevant to your situation, especially articles in the AB wiki besides that one.

[Fats Drywaller]

"The torture never stops" (Frank Zappa, 1976)

I'm killing time in the early morning before going out to run some errands, so I'll babble some more (you're welcome!).

The Mask Primer is another essential article, even more important than Machine Choices.  Just in case you weren't already aware of this, the choice of mask, or masks plural, is probably the main determinant of whether you eventually love or hate CPAP therapy.  Those of us who have stuck with the therapy and who have found the right masks love it, but many newbies hate it for the time being and struggle with one mask or another because they have various kinds of discomfort or possibly even pain.  We can hope that all of those newbies make it through to the other side by finding the right mask in addition to the right machine settings.  Masks are subjective and personal, so there's no guarantee that what is true for Person A will also apply for Person B or C.  You gotta shop around.  That's inevitable.

The good news is that there should be no reason to keep on using, indefinitely, a mask that turns out not to be right for you once you have given it a fair chance.  When you're having problems with CPAP (and everyone has some of those at first), remember that the mask is not a given and it is at least possible to try many others, including ones from the three main categories: nasal-pillows, nasal, and full-face.  Also, the mask doesn't have to be from the same manufacturer as the machine; they all use one standard hose connection.

The bad news is that masks are rather expensive, typically $75 to $100 each, and there are limits to what the insurance-and-DME scheme in the U.S. will allow with regard to trying different ones.  However, often there is a 30-day period at first during which you are allowed at least two and maybe more, so ask your DME and/or insurer about that.

Buying masks yourself is definitely the way to go if and when you can afford it (and you will need a copy of your CPAP Rx for that).  Reading reviews here on AB and elsewhere can give you a lot of useful pointers before buying.  Many of us have tried half a dozen masks or more, over some number of months or years.  I'm sure that the largest collection owned by any CPAP (or ASV) patient numbers in the dozens.

Don't take the word of any DME/RT personnel, and not even the word of your sleepydoc, about what size of mask frame or (especially) pillows/cushion/nosepiece you need. Often, each full mask package will include at least two sizes of nosepiece, sometimes as many as four, and it's important to have all of those to try at home, not just in the DME's office. Whenever you get a mask from a DME, insist on being given the complete package with all sizes and the instruction booklet and any sizing guide or chart if one is included. (However, even the manufacturers' sizing guides aren't always reliable, so you still need to experiment.) Your insurance will be paying for the complete package (and more!), so there's no reason for the DME to hold back any part of it.

Mask parts, including a frame of a different size and replacement pillows, cushions, and nosepieces, can be bought without a prescription, and can sometimes be found on Amazon & other general web-commerce venues depending on the make & model. There's also a part-replacement schedule used by insurance (originating with Medicare, I believe) that says how often you get replacement components from your DME, and that is more than generous enough. The replacement schedule used for Medicaid patients is stingy by comparison, but that's another story.

FYI, FWIW, HTH, etc.

[Gideon]

Well come to th Right Stuff. We can and will help you.

What to do NOW.
Get a copy of your sleep study(s) and post them here. Redact your personal info. That will tell us what variety of apenas you have and indicate if you may be a candidate for a more advanced CPAP machine. The full study and not just the summary.

Also get a copy of your prescription.
You want a copy of these documents for you personal permanent records.

Finally your CPAP machine. You want an Auto CPAP machine such as ResMed Airsense 10 AutoSet or AutoSet got Her.. You will have this machine until it wears out in 5+ years. You want a machine that is full data capable. And is compatible with SleepyHead software. This allows you to look at your detailed data down to a breath by breath basis when necessary.

Finally educate yourself. Read the links in my signature.

Fred

[OpalRose]

Hello,

After going to a sleep study last week and never feeling rested for the past few years, I was diagnosed today with severe sleep apnea. My problem is, they told me that I stopped breathing 80 times per hour. At best, I a am sleeping for 40 seconds at a time!  The CPAP provider that my doctor hooked me up with said that it will take 7-10 business days to set up the paperwork and since my insurance company requires pre-approval, another 7-10 business days before they will call me too make an appointment for my CPAP!

How do I sleep without worrying until then? I called my insurance company and they are trying to expedite the process. I don't even want to tell my husband how bad it is so that he doesn't lose sleep. How do you cope? I know I am tired enough to sleep, but how can I not worry?

Hi Darci,
Welcome to Apnea Board!  

I could have written your post and can relate to what your feeling.  Between the Sleep Clinic, Doctor and DME (Durable Medical Equipment) provider, it took 5 to 6 weeks to get my machine.

The best thing you can do now is to research the various equipment available, and question the doctor as to what he is prescribing.  Here is a couple links to guide you:
http://www.apneaboard.com/wiki/index.php...ne_choices

http://www.apneaboard.com/forums/Thread-...re-success

If your doctor is not answering your questions, ask here...we can help.

In the meantime, try to stay calm.  I know that’s not easy.  Like myself and many others, you more than likely have had sleep apnea for many years.  When I stated that I could have written your post, I let the anxiety of waiting to be treated get the better of me.  I wasn’t sleeping more than 1 or 2 hours a night.
I was fighting sleep and made my situation worse.  

You will be fine.  While waiting for your machine, try to sleep on your side.  Sleeping on your back with “untreated” sleep apnea will only make it worse.  I found that elevating my head a bit helped me to breath better.  Also, use a recliner to get some rest, if you have one.

[DarciWantsToSleep]

Thanks everyone! You're awesome! I fell asleep fine, well because it was Wednesday night, and by the end of the week I am near collapse . I also told myself, you haven't breathed while sleeping for years, what's a few more nights! And that's exactly what I'll tell my husband. Thank you again for your support. I am sure I'll need it often in the next few weeks and months.

[Big Guy]

Hello & welcome. I'm a new member myself. I took two sleep studies and I was told that I stopped breathing 70 times an hour during reg. sleep, and 60 times an hour during REM sleep. 

It took me about a week or so to get my CPAP machine. I've been using mine now for over three months, and am still waiting to feel better. Seems as if there isn't a magic period of time before one can tell a big difference. 

Going from never having used a CPAP, to using one each and every night, was as smooth for me as could be. Not a single issue or problem of any kind. 

I'm hoping that in a couple more months, I will begin to really feel an improvement. My numbers (AHI) are very good. My average is 2.1

Anyways, keep on doing what you've been doing. Lots of good information and knowledge on this forum. All available to you for the asking.