Just got my diagnosis yesterday. Looking for support

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

Just got my diagnosis yesterday. Looking for support

Post by FeelingAwake » Thu Feb 16, 2017 3:34 pm

I guess I just want to vent or be heard.. Since I don't have a CPAP machine, there is nothing you can do for me.. YET . I will be back I am sure to get advice.

Just reading the posts here has already made me feel better about what I am getting myself into... I knew it was going to be bad, but when I spoke with the sleep technician yesterday it has plagued my thoughts... The numbers were pretty bad...

Maybe we can start there.. I believe she told me I was stopping breathing(is this the AHI that people are talking about?) up to 80 times an hour I believe.. She said it was really bad.. You know you're in trouble when she gives you that look and says "YOU REALLY NEED THIS"... I had balked at how much this was all going to cost because my insurance has a high deductible.. They are going to bill it all, so I am just going to stop thinking about that and worry about how it all gets paid next month. In the mean time I am waiting for my next sleep study which will be in house.. They will evidently test different types of machines CPAP PPAP, etc... Different pressures...

I don't know if I am deluding myself, but I am really looking forward to this.. I just want to get it going. My blood pressure has steadily risen over the past 3 or 4 years as has my snoring which is KILLING my wife.. I am sure she is suffering worse than I am.. I spent nearly 5 months sleeping in another room.. But because she could feel us growing apart she said she would deal with the snoring.. Our short term solution was the snore mountain... We pile up a bunch of pillows in between us and she wears ear plugs... Still wake her up at times, but not as bad...

But that was just putting lipstick on a pig.. My blood pressure is regularly over 160/100 to 105... Since I've been taking blood pressure medicine I've become very aware of how bad I feel... I'm falling asleep at work and I fear that I am snoring at work and the people outside my office are too nice to say anything.....

Even with the tiredness. I have been able to keep up pretty regular exercise. I do Yoga and Tai Chi 3 or 4 times a week.. But I dread it more times than not lately because I am so dang tired....

I am sure this is nothing new to you all.. But a few questions about what to expect.

I did the at home test which consisted of a box strapped to my chest.. A thing on my finger and tubes up my nose.. I fell asleep at likely 11:15 and remember waking up around 12:30 to go to the bathroom Couldn't fall asleep till some time after 1:30am because it was so uncomfortable, but I persisted.. After 1:30 I must have slept through the night OK because they got good(BAD) data.....

Questions:

1) if i could eventually sleep with all that stuff on me and up my nose, does that bode well for being able to sleep with a mask.??

2) I am a side to stomach sleeper.. Do you all force yourself to sleep on your back? Do you have to sleep on your back? SHOULD? You sleep on your back, does it make things better? I cannot sleep on my back at all now.. If I do, I would suffocate..

Anyways.. My sleep study is March 2nd.. That is so far away! I am on the wait list and I am hoping I get a call much sooner.. Because even after that I need to then get the equipment which could be another week(guessing). SO I am like a month away... I just want to get this going.. I have this nagging feeling that things are getting worse with me. I would hate to have something bad happen on the verge of getting help.


Robert

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OkyDoky
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Re: Just got my diagnosis yesterday. Looking for support

Post by OkyDoky » Thu Feb 16, 2017 4:03 pm

FeelingAwake wrote: Questions:

1) if i could eventually sleep with all that stuff on me and up my nose, does that bode well for being able to sleep with a mask.??

2) I am a side to stomach sleeper.. Do you all force yourself to sleep on your back? Do you have to sleep on your back? SHOULD? You sleep on your back, does it make things better? I cannot sleep on my back at all now.. If I do, I would suffocate..

Anyways.. My sleep study is March 2nd.. That is so far away! I am on the wait list and I am hoping I get a call much sooner.. Because even after that I need to then get the equipment which could be another week(guessing). SO I am like a month away... I just want to get this going.. I have this nagging feeling that things are getting worse with me. I would hate to have something bad happen on the verge of getting help.
Welcome to the Forum. You are ahead of many already by coming here. I had no idea when I went through the process and just followed what I was told. I lucked out and got a good full data machine but many do not and that hinders what both you and your doctor knows about your therapy.
So find out which machines are full data capable and do not take one that isn't. The cost to you is the same for a brick as a full data machine.
Waiting through the process is difficult but it gives you time to learn and ask questions before you have to make decisions.

1. It could be an indication. Mask choice is very individual and it may take awhile to find one that works for you. I had no problem sleeping with a mask so maybe that will also be your story. I can see you see the need for treatment and have a positive attitude. Those are the biggest hurdles for many so again you have a head start.
2. Before CPAP, I also only slept on my stomach and even during my studies. They did come in and ask me to turn on my back to get data from that position but it didn't last long. Sleeping on your back actually increases events, so it's not the best position to sleep in especially before you get your machine. The trick to sleeping in any position that you are comfortable sleeping in is the right mask and pillow combination. Sleeping on the edge of the pillow helps where it doesn't push on your mask.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

rohdej
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Re: Just got my diagnosis yesterday. Looking for support

Post by rohdej » Thu Feb 16, 2017 4:18 pm

Yes we can help you now!

Joining this support group would be an excellent start!

You don't yet have a machine, you can familiarize yourself with data capable ones that work with sleepyhead software before they give you a brick. Data capable machines record every breath all night long and will help you later to dial in your treatment. Bricks record if you use the box and how many hours.

We can warn you if you get sent home with a autoset set set to a range of 4-20 (wide open) that you will have claustrophobia suffocation feelings. When the pressure is lower than 6.5 ish, it will not purge all of your exhaled air and you will rebreath it leading to those feelings. You can start by turning off the ramp (its not really useful until above 10 cm)

Side sleeping is easy, stomach is more difficult you would need to put your head in a donut or a cut out pillow to make room for the mask. Do you suffocate on your back because you have obstructive sleep apnea? With a Xpap device you may now be able to sleep on your back when using it, it may require a slightly higher pressure than side or stomach but if you have an autopap device it will adjust.

Masks - Do you wear glasses and read before bed? If you mask up like a fighter pilot can you put them on and off without taking the mask off? Can you do it one handed? If you're not a mouth breather the minimalist pillow style masks may work well. I use the P10. If you are, it is "Possible" to retrain your subconscious mind to keep your mouth shut but some can't. If you wake up with cotton mouth after getting and using your setup you are probably a mouth breather and may need a different style of mask.

Read the forum!

Ask questions!

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Pugsy
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Re: Just got my diagnosis yesterday. Looking for support

Post by Pugsy » Thu Feb 16, 2017 4:27 pm

Welcome to the forum.

You can sleep in any position you want to sleep in wearing any mask...now some masks might be a little more challenging on your side or on your stomach but it can be done.

Actually sleeping on your back can make things worse in terms of the airway tissues collapsing but even people who can't sleep in any other position than on their backs can have successful therapy.

I tell people that with the right machine and the right settings...they can use whatever mask they want to use and sleep in whatever position they personally want to sleep in and have successful therapy.

Depending on your deductible you may meet all or a good chunk of the deductible with the sleep studies.
If your deductible is extremely high and there's still a big gap out of pocket there are sources for cpap machines that don't cost as much as DME (cpap suppliers) will bill out.

Best thing for you to do is contact your insurance company yourself and find out exactly what they do...some do a rent to own and the cost is spread out over several months. Some buy up front.
Do the math...figure out which way costs you the least amount of money if the sleep studies don't cover the deductible or your co pay is going to be high.
Read this.
https://maskarrayed.wordpress.com/what- ... me-part-i/
and this
http://adventures-in-hosehead-land.blog ... -with.html

Oh...unless you get a nasal prong mask...nothing goes up inside your nose like you are probably thinking. Nasal pillow masks have a tiny little cone that goes barely into the nostrils but doesn't touch anything inside the nostril...all the touching is done on the outside of the nostril.
The nasal prong masks...not something I would advise a newbie to try...now the nasal pillow masks...as long as you can normally breathe through your nose just fine I suggest that people try them because they are so minimal and properly size they don't touch anything inside the nose. There's simply less surface area to mess with having to keep a good seal.

Also read this
https://sleep.tnet.com/reference
take some time and stroll through the various pages. Lots of good information there.

You can do this...and yes...80 times per hour is pretty bad.
My husband was thrilled when I got my machine because he said my snoring could wake the dead...and now he sleeps a lot better too.

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Janknitz
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Re: Just got my diagnosis yesterday. Looking for support

Post by Janknitz » Thu Feb 16, 2017 4:59 pm

Be sure to read my blogpost "What you need to know BEFORE you meet your DME" in my signature below. The machines are OUT OF DATE, but the insurance info is important.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

linuxman
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Re: Just got my diagnosis yesterday. Looking for support

Post by linuxman » Thu Feb 16, 2017 5:06 pm

All good responses, and I don't have much more to add. I'll just say that on back sleeping, once you get your pressure right you should be able to sleep on your back, assuming snoring and apneas were the reason you couldn't/wouldn't before. This is been a wonderful change for me. I like sleeping on my sides too, but it's nice to have another option. Sleeping on your stomach is difficult, but I think you could get away with a sort of half side/half stomach position, with your face partly off the pillow. I'm just getting into trying nasal masks, and I think I can make that work with a nasal. Full face would be more difficult. I do like to occasionally sleep on my stomach.

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LSAT
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Re: Just got my diagnosis yesterday. Looking for support

Post by LSAT » Thu Feb 16, 2017 6:23 pm

Consider buying from an on line vendor like cpap.com. It will cost you about half of what the DME will charge you.

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bmanley
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Re: Just got my diagnosis yesterday. Looking for support

Post by bmanley » Thu Feb 16, 2017 6:47 pm

You are way ahead of me when I started. Didn't find the forums until after i got the shaft. My DME got me a very basic machine but acted like they were giving me the best equipment out there. Do your homework so you can get the best benefit for your money. Hope you can get thru this in a short amount of time and get to using it to help you get some better sleep

Janknitz
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Re: Just got my diagnosis yesterday. Looking for support

Post by Janknitz » Thu Feb 16, 2017 7:39 pm

LSAT wrote:Consider buying from an on line vendor like cpap.com. It will cost you about half of what the DME will charge you.
Maybe, maybe not.

A lot depends on your insurance.
You may (as already pointed out) have used up your deductibles on the sleep study.
It may make a difference if the insurance requires rental (which could take you into a new calendar year and a new deductible) or does an outright purchase or a combination of the two.
Most insurers have a contracted price with the DME. That is usually far less than the retail "fantasy price" your DME would like to charge. Even if you haven't met your deductible, the contracted price may be less expensive than online.

You need to do your homework. Talk to the Insurer first to answer some questions:
1. Will you meet your deductible with the sleep study?
2. Do they require rental or purchase?
3. Will you get the contracted price if you haven't met the deductible
4. Does the insurer's contract with the DME permit the DME to "balance bill" (charge you the difference between the contracted price and the retail price for a more expensive machine in the same billing code--most insurance contracts forbid this and many state laws forbid it).

NEVER, NEVER, NEVER, EVER, EVER, EVER Trust your DME to tell you the answers to any of these questions. Always find out for yourself before you let the DME lie to you.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

D.H.
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Re: Just got my diagnosis yesterday. Looking for support

Post by D.H. » Thu Feb 16, 2017 8:58 pm

If you expect to meet the deductible this year (include the price of the machine in the calculation), then I suggest going through your insurance.

I like my DreamStation auto. The biggest drawback is that sometimes the water doesn't last the whole night. Another problem is that if you turn it off to go to the bathroom, it can have burning smell when you turn it back on. Also, the fill makr in the water tank is hard to see.

to get you off to a good start, the right mask is even more important than the right machine. I like my Comfort/Gel nasal mask, but this can vary from one patient to the next.

BTW, do you have a titration pressure yet?

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FeelingAwake

Re: Just got my diagnosis yesterday. Looking for support

Post by FeelingAwake » Fri Feb 17, 2017 6:51 am

Thank you all so much for the welcome... I looked at my paper yesterday and the AHI number was 38.. Which is still really bad, but I don't know where I got that 80 number from?


Thank you for the info on the machines. I will ask that question about a data capable machine as that will keep me engaged as I am a data geek.. When i went to speak to the Sleep Tech a few days ago, she showed me two units that they use and they were both the same.. I will get a picture of them next time I go before i am forced into buying something crappy.. They also had 3 different masks and I did see the nose pillow one, and that immediately seemed the best for me.

I breath though my nose throughout the day. I do have some nasal sinus issues, but as I pay attention, I mostly nose breath.. When laying on my back, as soon as I fall asleep, I am forced awake as my throat feels like it collapses.. Especially when falling asleep in a reclining chair.. The only way I can nap in a reclining chair is if I try and tilt my body to the side. Otherwise I pass out only to snort myself awake over and over.


Thanks for the information, I will be spending a lot of time here reading and I will drop a line if I have any questions.....

FeelingAwake1

Re: Just got my diagnosis yesterday. Looking for support

Post by FeelingAwake1 » Fri Feb 17, 2017 7:11 am

Just a quick update.. I was looking through the newbie section and the box they had out for display was the ResMed Airsense 10 machine.. I am not sure which model though. There was the girl one and then a black one....


Are these generally good machines? From the video I watched it appeared to have a removable SIM card, which I assume is important to pulling off data? Seem to have a lot of features.


I will wait to hear the verdict

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Re: Just got my diagnosis yesterday. Looking for support

Post by Cardsfan » Fri Feb 17, 2017 7:15 am

To pick a machine- you want to check the Model # of the machine. Many machines look alike, but there are different models. The model # and serial # is on every machine. The people on here can advise you if the model # is fully data capable.
I know it sounds like a lot to learn, but there is lots of help here. (My AHI untreated was close to yours, so don't feel alone)
Resmed Airsense 10 Autoset and Resmed Airsense 10 Autoset for Her are both full data. Be careful, the Resmed Airsense 10 line has other models that are not as advanced. If you go to
https://www.cpap.com you can read up on the different Resmed machines. You want AUTOSET.

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linuxman
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Re: Just got my diagnosis yesterday. Looking for support

Post by linuxman » Fri Feb 17, 2017 7:34 am

FeelingAwake wrote:Thank you all so much for the welcome... I looked at my paper yesterday and the AHI number was 38.. Which is still really bad, but I don't know where I got that 80 number from?


Thank you for the info on the machines. I will ask that question about a data capable machine as that will keep me engaged as I am a data geek.. When i went to speak to the Sleep Tech a few days ago, she showed me two units that they use and they were both the same.. I will get a picture of them next time I go before i am forced into buying something crappy.. They also had 3 different masks and I did see the nose pillow one, and that immediately seemed the best for me.

I breath though my nose throughout the day. I do have some nasal sinus issues, but as I pay attention, I mostly nose breath.. When laying on my back, as soon as I fall asleep, I am forced awake as my throat feels like it collapses.. Especially when falling asleep in a reclining chair.. The only way I can nap in a reclining chair is if I try and tilt my body to the side. Otherwise I pass out only to snort myself awake over and over.


Thanks for the information, I will be spending a lot of time here reading and I will drop a line if I have any questions.....
As mentioned by others, try to get the specific model number...just call and ask..they should be able to give it to you. What you describe about your throat collapsing, snorting, etc..that's classic obstructive sleep apnea. I do think you'll find that you'll be able to sleep on your back some if you want to. While on pressure, I actually have to work at it to create an obstructive snort . On the "80" number, that could have been O2 saturation (hopefully minimum!)..and yeah that wouldn't be good. Yes AHI of 38 is a lot of events. Not a record or anything, but it's high.

Yes these machines have SD cards (standard ones). That's how you get data to your computer. However, the mere presence of a card doesn't mean it's fully data capable. Lesser models may only record compliance data (time on the machine), or maybe just basic AHI. Full data capable machines store detailed breath by breath information, apnea events, etc.

On mask choice go with what you're comfortable with (pillows may well be it), but do keep in mind that you'll probably want to have a backup full face mask in case you get a cold and your nose is congested. You'll have to experiment with the nasal masks to see if you mouth breath some. While sleeping you may actually open your mouth a bit, and then you've got the air blasting out of your mouth. You'll just have to try it, and see what happens. You may have to try a chin strap, or other remedies if that's the case.

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Re: Just got my diagnosis yesterday. Looking for support

Post by EdNerd » Fri Feb 17, 2017 8:35 am

Welcome aboard!! I just started my CPAP journey a week ago. It does require some lifestyle changes.

I had a sleep study maybe 10 years ago - they told me I didn't have apnea; I just snored like a freight train!! But recently my wife was having sleep issues, so I decided to have another study to see if they could mitigate my snoring for her sake. As far as I knew, I slept fine - my snoring wasn't bothering *me*! And the results came back with oxygen hovering in the low 80s with a dip to 77, and over 200 awakenings in 7 hours. The next time I came back, I was carrying a ResMed AirSense 10 Elite and a face mask!

It does take some getting used to. But it does make a total difference in your life. I haven't snored again!! That right there is a huge benefit. I am fighting through figuring out the mask sealing to prevent air leakage and how to sleep with "this thing" on my face. But it is so worth it!! Especially considering the alternative ....

Please do not be afraid to create and account and post back here often. Yeah, most of this has been asked before - but nobody here has a problem passing down what they've learned and what's helped them. It is a journey and a long one. You're in good company!

Ed

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Very helpful stuff:
"Taming the Mirage Quattro" http://tinyurl.com/2ft3lh8