And the journey begins....

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Mittens

And the journey begins....

Post by Mittens » Wed Oct 04, 2017 6:55 pm

So I got the call today. "You recently had a split night sleep study, and we now have the results..." I thought I was prepared to hear mild or maybe even moderate sleep apnea. Maybe. My PCP's office last week had commented, "Sounds like a CPAP is in your future" when I mentioned anecdotal observations and that I was still waiting on results. The sleep tech had mentioned that I had met the criteria of 10 or more events an hour during the early part of the night, and of course I knew they had asked me to put on the mask for the latter part of the sleep study.

I was unprepared to hear "severe apnea." Sure, it validates why I've been so tired, but -- really? I'm not ready for this. I guess I'll hear from a DME in the next few days. I'm not even sure what to ask or what all to answer if given choices on masks, etc. I think the one thing I will want is a copy of at least a summary report to read, before I get too far into this. This feels like unfamiliar territory, for sure.

TedVPAP
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Re: And the journey begins....

Post by TedVPAP » Wed Oct 04, 2017 7:11 pm

Mittens wrote:So I got the call today. "You recently had a split night sleep study, and we now have the results..." I thought I was prepared to hear mild or maybe even moderate sleep apnea. Maybe. My PCP's office last week had commented, "Sounds like a CPAP is in your future" when I mentioned anecdotal observations and that I was still waiting on results. The sleep tech had mentioned that I had met the criteria of 10 or more events an hour during the early part of the night, and of course I knew they had asked me to put on the mask for the latter part of the sleep study.

I was unprepared to hear "severe apnea." Sure, it validates why I've been so tired, but -- really? I'm not ready for this. I guess I'll hear from a DME in the next few days. I'm not even sure what to ask or what all to answer if given choices on masks, etc. I think the one thing I will want is a copy of at least a summary report to read, before I get too far into this. This feels like unfamiliar territory, for sure.
The severity doesn't matter as the treatment is the same - pressure. It works very well. Once dialed in, you will feel better - and that is good news.

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ajack
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Re: And the journey begins....

Post by ajack » Wed Oct 04, 2017 7:47 pm

some people with severe apnea is resolved with pressure of 6. Some people with mild apnea need a pressure of 20.

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RiverDave
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Re: And the journey begins....

Post by RiverDave » Wed Oct 04, 2017 7:57 pm

Hey Mittens,
As Ted stated earlier, it's not the severity that matters, it's the fact you are seeking treatment. There is definitely an adjustment period, but go into it with a good, positive attitude and things will improve. Also, take an active role in your treatment. Learn about it as much as you can, ask pointed questions (here and of your doctor), and you will be better prepared. I wish you the best of luck.

Dave

Mittens1

Re: And the journey begins....

Post by Mittens1 » Thu Oct 05, 2017 10:58 am

I'm curious. Should I ask for a copy of my study report before starting CPAP use, or just wait till the follow-up appointment with the physician 30-90 days after use begins? I've wondered about requesting it even now, before the DME gets me set up with the machine, but maybe that's pushing it. Might be too much info, yet it is my health we're talking about. Right now I'm a little torn between "They're the experts" and "I'm going to have to get up to speed and learn to be my own advocate, if I'm to get optimal results with the tools available." Thoughts?

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MaxINTJ
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Re: And the journey begins....

Post by MaxINTJ » Thu Oct 05, 2017 11:09 am

Mittens1 wrote:I'm curious. Should I ask for a copy of my study report before starting CPAP use, or just wait till the follow-up appointment with the physician 30-90 days after use begins? I've wondered about requesting it even now, before the DME gets me set up with the machine, but maybe that's pushing it. Might be too much info, yet it is my health we're talking about. Right now I'm a little torn between "They're the experts" and "I'm going to have to get up to speed and learn to be my own advocate, if I'm to get optimal results with the tools available." Thoughts?
Experts? You get to talk to experts? Lucky you.

I have gotten far better information (and more of it) here. While there are a couple of annoyances on the forum, there are some very helpful and knowledgeable folks here as well.
Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

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Sleeping Ugly
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Re: And the journey begins....

Post by Sleeping Ugly » Thu Oct 05, 2017 11:29 am

At the DME's office I got about 1.5 minutes of instructions on how to use and clean the CPAP machine. I was given about 3 minutes to get used to a full-face mask, which it turns out, I didn't need (I now have a comfortable nasal pillow mask). I got no information on how to use or read the data card or how to interpret the results or how I might feel as a result of using the CPAP or how changing settings might help me.

I got 97% of my information here and the other 4% from watching The LankyLefty27 on Youtube.

There is a wealth of information here from people who USE CPAPS and have been a newbie and remember the experience. I am new to having a CPAP--about 2 months, but I now have excellent sleep and great numbers and feel much changed. It didn't happen overnight and it took a lot of reading and asking questions and advocating for myself.

The best of luck to you!
CPAP Therapy: providing restful and restorative sleep, while making you LOOK like you haven't had ANY! --me

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Cpapian
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Re: And the journey begins....

Post by Cpapian » Thu Oct 05, 2017 11:48 am

If you can get a copy of your sleep study, I would suggest doing that. I don't know how quickly they are ready.

Look at machines and learn about the different models. The two brands most popular are, the ResMed and Phillips Respironics. Whichever you feel you prefer will do the job, BUT, it must have full data capabilities. So, so very important. It allows you to monitor your progress using a free software called SleepyHead.

There are a few different types of Xpap machines. The CPAP, which is set to one pressure and stays there all night. The APAP, is set to a pressure range, with a minimum pressure and a maximum pressure. The machine adjusts the pressure based on your needs. Then there are two other types used for people who are not adequately treated by the first two; they are bilevel and Asv(? I think). It's doubtful you will have to worry about them right off the bat.

Masks come in a variety of coverages, nasal pillows, nose only masks, and full face masks, with a few hybrids thrown in for good luck. Masks leak because heads and faces come in a wide variety. People breath differently. People sleep differently.

Hoses can be regular, slim and heated.

Hoses get in the way, so there are hose management systems. (I use my headboard).

So there's a lot of variables to learn about. Unless you are in the field, you will probably need some time to absorb and make sense of all the words.

Then there's your sleep. You guessed it, more variables.....you can have hypopneas, obstructive hypopneas, snores, RERAs, centrals, periodic breathing to name a few. Also, different things happen during different stages of sleep. REM sleep can be more active in terms of events.

So that's why you want your sleep study. From that you will see what type of events you had and in what stage of your sleep they occurred.

So cruise around this forum and see what people say about various things. Then make up your own mind.

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ChicagoGranny
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Re: And the journey begins....

Post by ChicagoGranny » Thu Oct 05, 2017 11:55 am

Mittens1 wrote:Should I ask for a copy of my study report before starting CPAP use, or just wait till the follow-up appointment with the physician 30-90 days after use begins?
Oh hell no, don't wait. Now is the time to start taking control of your therapy.

Call today and tell them you want them to email you the summary of your sleep study and the prescription for CPAP. If they balk, demand it. It's your legal right.

Also ask them how you will get a CPAP. Some practices send the script and an order to their preferred DME. The DME then contacts you for the delivery of the equipment. If the practice chooses a DME, you need to make sure it is in your insurance network. For whatever reason, you may not like this DME. Having the prescription allows you to go to any DME you choose.

When you get the sleep study summary and the script, post some details here. We can help you make sure the machine you are offered is an acceptable model and not a brick.

We can also help with mask selection. Here are some tips:
How to Choose an Initial CPAP Mask for Newbies

1. If you had a sleep lab titration and liked the mask that was used, and that mask was recommended by your medical team, then go for it.

2. If not 1., then did your medical team recommend a nasal mask or a full face mask (FFM)? For many people, nasal masks are easier to use assuming they don't mouthbreathe, leak air out the mouth or get air inflating the cheeks while using CPAP during sleep. If you have any of these problems, you may need to use a FFM. (Despite what you may see in the forum, there are many of us that find FFMs are easy to use, do not leak and are not uncomfortable.)

3. Once you have decided whether you need to start with a nasal mask or a FFM mask, begin looking at the mask descriptions and images at https://www.cpap.com/cpap-masks.php . This is the website of this forum's host.

4. For a newbie, you should select a popular mask that gets high rankings from the reviews. Some people in this forum get excellent usage out of masks that are not popular and do not get good reviews. They might rave about the mask to you. But for a newbie, you want to start with a popular mask with high rankings. After you get some experience, you can experiment with masks that pique your fancy but are not so popular.

5. Once you have a category (nasal or FFM) of masks selected, you can go to that category on CPAP dot com's web page and sort by Biggest Sellers and then by Rating. You can check the ratings and read reviews.

6. When you receive your mask and machine, you should watch the mask manufacturer's videos (On CPAP dot com's web page) for instructions on use and adjustments.

7. If you have any problems using the mask, please start a new thread here and ask for help.

8. It's not unusual to try different masks before settling on one that works well for you. If you find yourself buying a fourth or fifth different mask, the problem may be with the way you are trying to use the masks, instead of the mask itself. Please get help from the experienced forum members.

- ChicagoGranny

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chunkyfrog
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Re: And the journey begins....

Post by chunkyfrog » Thu Oct 05, 2017 12:15 pm

Sleeping Ugly wrote: . . .
I got 97% of my information here and the other 4% from watching The LankyLefty27 on Youtube.
. . .
The creative math [97+4=101] was a clever way to make the point
that we are getting more information than we are "supposed to"---
As a matter of fact, far more info than too many providers KNOW exist.
Kudos!

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Mittens1

Re: And the journey begins....

Post by Mittens1 » Thu Oct 05, 2017 1:15 pm

They've already sent the script to my choice of DME provider. At the sleep study they had a chart of which insurances worked with which area DME providers. (I'm guessing from comments, that's not typical of some labs?) They asked me at that time which I would prefer. I made a choice, and they then confirmed when they called me with a verbal report yesterday, and also informed me the doc was prescribing a Resmed Autosense 10 (I think they said Autoset something or other, will find out when the DME calls, I do know it's an AutoPap, not a set pressure CPAP, since the pressure will vary according to need.)

I called this and will pick up the report later this afternoon after signing a release. I spoke with a tech yesterday who has already provided way more info than I figured they be able to give this early, and invited questions "anytime, just call us with any questions you have." So far I am impressed with the office, and with the fact that several of the staff are willing to share parts of their own OSA experience, that they know it not only "from the books" but by living with it.

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ChicagoGranny
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Re: And the journey begins....

Post by ChicagoGranny » Thu Oct 05, 2017 1:29 pm

It sounds like you are dealing with some better-than-average providers. Make sure the machine says "AutoSet" on the body - https://www.cpap.com/productpage/resmed ... idair.html

Mittens1

Re: And the journey begins....

Post by Mittens1 » Thu Oct 05, 2017 6:56 pm

OK - so questions as I begin to digest the study and the coming steps.

During the sleep study they said they wanted me to try on two masks, one was a full-face mask and the other a nasal mask. I knew immediately, that full-face mask was not for me, I felt like I was suffocating. It felt like I couldn't breath, and was made worse by the fact I had to have my glasses off (understandably), which made me all the more uncomfortable in a strange place. I'm not claustrophobic, but even a few minutes of that and I was ready to crawl out of my skin. Go to sleep? Not in this lifetime. The nasal mask, that was night and day difference, and as far as I know it was the same pressure but I could breathe okay with it.

So -- I lean strongly toward the nasal mask, although I'm not certain it'd be the same one from the study for two reasons. First, my eyes were quite dry the next morning because there was some air blowing into them, it seemed, any time I opened them. Second, I woke up about 30 minutes before we were scheduled to finish with part of my face numb. I asked the tech if that was normal. He said the mask may have been on too tight right there, because there was some redness. Well, it'd been there only half the night. The dry eyes and possible numbness are of a little concern walking into this, hoping that we can avoid long term struggles. Am I saying no way to full-face too early in the game, or is it reasonable to go with my gut instinct for now, and revisit it only if the nasal version doesn't work out? How do people overcome dry eyes? Has anyone else experienced numbness as a result of wearing a CPAP mask? If so, how did you resolve it?

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Re: And the journey begins....

Post by yaconsult » Thu Oct 05, 2017 10:33 pm

When you first start on CPAP therapy, you have a unique opportunity to try and return different masks to find out which one works best for you. At least try some nasal pillow masks. For many people, they are far more comfortable and most people prefer having as little on their face and head as possible. The two most popular nasal pillow masks on our sponsor's site are the AirFit P10 and the older Swift FX. The P10 seems to be the most popular one around here and is the one that I use.

Also, look into getting or making a CPAP hose holder to keep the hose out of your way and keep the mask from being pulled on when you roll over.

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kteague
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Re: And the journey begins....

Post by kteague » Fri Oct 06, 2017 12:38 am

On getting the machine - if the delivered machine does not say on it what you expect verbatim, do not sign for it. Returns can be problematic. Names on the machines can be very similar so it's best to not go by memory. Write down exactly what they say they plan to dispense in advance and check it here, then double check the machine to make sure that's indeed what gets delivered. As to the mask, If you have no issues with extreme congestion or a severely deviated septum, you likely won't need a full face mask. I personally prefer the nasal pillows, but everyone is different. If you do get a nasal mask, make sure how it fits over the bridge of your nose doesn't block things off and cause congestion. That was my reason for using nasal pillows. Many masks have a video to help with fitting it properly. Also, consider your sleep position when selecting a mask. For instance, I sleep on my side with my face on my hand. Masks with hoses carrying the air along the side of the face aren't comfortable for me. Don't want to sleep on a hose. When I complained about a particular one once, someone else chimed in that they love that mask. Guessing they were a back sleeper. So consider your sleep habits and see if one makes more sense than another.

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