Got dianosed with severe obstructive, have questions

[Nimbus]

Hello everyone, new here. To forums in general really so hopefully I am not going to do or ask anything too stupid.

Quick about me. I'm 26, and about 300 pounds. So fairly hefty. I work a night job and have a very very confusing sleep schedule which is basically wherever I can best fit it in. It is also very stationary, so not much movement in my normal routine. Or sunlight for that matter. Nasty case of snoring, which has gotten worse which started all this with a doctor visit.

Which is when I got diagnosed with Obstructive Sleep Apnea, very very severe. 118 Events Per/Hour. Honestly I had no any idea and that number sounds insanely high to me, given what averages I have seen around while doing research. That is what the sleep doctor said however. Just got my titration study done last night and am waiting for the verification that CPAP works and prescription. Given the timing this seems like a really good time to learn as much as I can.

I've done a lot of investigation about the massive mountain of health issues it causes, so I think I'm good there. Looked into why I have it, so think I am good there as well. Mostly right now I am looking at what kind of machine would be best for me. I am frankly shocked at the massive selection of choices out there. I think I have it narrowed down to the S9 Elite CPAP or the S9 Autoset CPAP. I honestly don't know which is best for me, or in general. The CPAP or APAP. Any advice on this front? I don't think it comes with a mask so I could use advice a good full (Nose/Mouth) mask too.

All that said, I have no idea how my insurance chooses what machine I can/can't have. Or my Doctor. Everyone down the line of studies has been fairly unhelpful with that information. Is there any way to ensure I am getting the best machine for me rather than some cheap knockoff a doctor may provide without knowing better?

I think the last question is which site you all enjoy/prefer to order from. I found a lot of information on CPAP.com however I see a large number of distributors out there.

Any other tips would be welcome. Rather overwhelmed with information right now. Slightly scared at the 118 number as well. Just trying to make sure I handle this as best as it can be so I can get my life back to where it should be.

Thanks for any kind soul willing to help out.

[DreamStalker]

I say stupid things all the time so don't hold back.

APAP is always the preferred choice because APAP can be set to CPAP mode but the reverse is not true. APAP allows you to easily re-titrate yourself at home in case you lose some weight (or gain some). It allows you to titrate pressure over longer period of time rather than one-night snapshot for the sleep lab titration.

Masks: Which ever one fits most comfortable without any leaks. In general, the full face (FF) masks have more facial real estate and thus more places for leaks to occur. The nasal cushion are next in surface needed to seal, and finally the nasal pillows. There are a few other more exotics like the oral, nasal prong, and hybrids (oral and nasal pillow combo). Your titrated pressure may have an impact into where you want to start with masks.

In the end, it is the MASK that is key to this therapy and you may have to try several before you find the key.

Welcome and be sure to visit here as often as possible during the first few months of therapy.

[Nimbus]

Hah, thanks! I most certainly will come back when I need help or have questions.

Any specific gear recommendations to begin with, machine wise or otherwise? I don't think anything will be worse than the mask/machine the lab used. Sounded like a car running in the room and I could hear two mask leaks all night long. Also, no Humidity settings. Still hoping to figure out how to handle the doctor/insurance aspects as well.

Thanks again for all the advice however, I'll keep that in mind. Definitely want this to go well, so willing to try whatever it takes.

[Pugsy]

Have you read this blog? If not...read it.
http://maskarrayed.wordpress.com/what-y ... me-part-i/

The S9 Elite is a great machine but if you can get the S9 AutoSet...get it. It's like 2 machines in one with the ability to use either straight CPAP mode (that's what the Elite does) or APAP mode with the adjusting pressures.
While you may not need or even like APAP mode....it's nice to have it available just in case.

Don't be confused with the S9 Escape Auto...while it is an auto and it does collect some data...that data is extremely limited and if you are going to get full data....get full data. The Escape Auto doesn't offer leak data or AHI breakdown data...both are extremely important in evaluating therapy.

ResMed S9 machines are great machines...Respironics makes a great machine also. The PR System One 60 series...know your models though.
Of all the brands of machines....I would suggest either the ResMed S9 or the PR System One brands and make sure a full efficacy data model. Those 2 brands both have easily obtained and used software and both offer the most comprehensive data values available for evaluation of therapy.
Both are quiet. Some minor pros and cons with each brand but none are deal breakers.
I happen to own both brands in the bilevel machine model line....It's a toss up which is the best.

When using a DME and your insurance to purchase the machine...The cost to you will be the same no matter which brand.
If you are paying out of pocket for your machine due to high deductible or no insurance...get the PR S1 60 series model 560 with the heated hose. It's almost half the cost of the similar model in the S9 line.

[DreamStalker]

Hah, thanks! I most certainly will come back when I need help or have questions.

Any specific gear recommendations to begin with, machine wise or otherwise? I don't think anything will be worse than the mask/machine the lab used. Sounded like a car running in the room and I could hear two mask leaks all night long. Also, no Humidity settings. Still hoping to figure out how to handle the doctor/insurance aspects as well.

Thanks again for all the advice however, I'll keep that in mind. Definitely want this to go well, so willing to try whatever it takes.

Well first of all what I meant was that you need to educate yourself by reading here early and often as it is the first couple of months that are crucial to a good start. Don't just come here when you need help or have questions -- that part comes after you got everything working properly.

I got my gear several years ago and so I've not kept up with all the newer models. Others here can provide that specific advice. Only thing is to get an APAP. Consider renting for the first couple of months just in case you end up having to need a bi-level machine.

Here's what you need to do right away:

1) Get a copy of your sleep study and post details of study here (w/o your real name and info of course). You paid for the study and you have a right to a copy of the results.
2) Make sure your doc gives you a hard copy Rx of your machine, even if they tell you they will fax it to the DME of your choice, get the hard copy in hand --- is should be good for life, or 99 years which ever comes first.
3) Visit here and read read read
4) the rest will follow as you become involved with your own condition.

[Nimbus]

Right Dreamstalker; Didn't mean to imply I'd be lazy about it. Just looking for a starter boost here. I'll be reading as days/weeks go by to ensure I know what is up. Should be a lot more informed next thread I make!

Pugsy - Reading the Blog now, thanks! Will reply once I complete if anything is unclear. I think I'll go for the S9 AutoSet. It looks feature complete. I can pay out of pocket, just would prefer not to. Hopefully insurance helps! I think I need some nasal gel too, because I look like someone punched me in the nose after last night's study with their mask. It sounds like S9 AutoSet has good data too, which is nice for all the reasons listed. Again, thank you for the post!!

Dreamstalker - Ok, I'll follow that list. Need to call them back today to ask about the sleep study so I can get that information for you all, since generally I get the impression the folks here know a lot more than the Sleep Tech I spent time talking to. Is there any specific sites/locations that would offer renting? The chance of needing to switch to bi-level and having already having bought a CPAP sounds unpleasant.

[DreamStalker]

Right Dreamstalker; Didn't mean to imply I'd be lazy about it. Just looking for a starter boost here. I'll be reading as days/weeks go by to ensure I know what is up. Should be a lot more informed next thread I make!

Pugsy - Reading the Blog now, thanks! Will reply once I complete if anything is unclear. I think I'll go for the S9 AutoSet. It looks feature complete. I can pay out of pocket, just would prefer not to. Hopefully insurance helps! I think I need some nasal gel too, because I look like someone punched me in the nose after last night's study with their mask. It sounds like S9 AutoSet has good data too, which is nice for all the reasons listed. Again, thank you for the post!!

Dreamstalker - Ok, I'll follow that list. Need to call them back today to ask about the sleep study so I can get that information for you all, since generally I get the impression the folks here know a lot more than the Sleep Tech I spent time talking to. Is there any specific sites/locations that would offer renting? The chance of needing to switch to bi-level and having already having bought a CPAP sounds unpleasant.

Best place is this forum. There are others and they are ok, but the best place is this forum by far. And Pugsy is probably your best advisor concerning all things xPAP.

[archangle]

There's some info in the "useful links" in my signature line.

Be prepared. Many DMEs (CPAP sellers) will try to screw you with a machine that doesn't record therapy data. Good data capable machines are like having a mini sleep test every night.

Find out which DMEs are "in network" for your insurance. If one won't treat you right, try another.

[Nimbus]

Glad to know I am in good hands!

Pugsy: That blog is simple amazing. Thank you so much for that link. It really spells out how to handle exactly what I was asking. You are a savior!

One last quick question before I run off to sleep (11 am. Heh. Told you it's funky.)

Is an average of 118 events/hour over a sleep study... reasonable? It sounds crazy high to me. I don't think I've seen anyone else claim as high. They sleep doctor I spoke to was very clear though, every 30-40 seconds I had one. I just am curious if they measure that wrong somehow sometimes? Or if there is anything special I should do since that is apparently just crazy-high?

[pbb]

Nimbus -- welcome. I wish I would have queried this forum before purchasing my first CPAP machine 1 1/2 years ago -- you're doing the right thing. As for me, my CPAP education cost $1100 out of pocket (see below).

There's lots of good information here, and I've learned PLENTY by just reading and trolling. For my money, Pugsy is the dean of the forum; you can always trust her comments. I just went on Medicare and made sure that my sleep doc prescribed a ResMed S9 Autoset, my second machine. Please learn from my $1100 mistake: DO NOT get any ResMed machine with the name "Escape" -- it's little more than a brick for the reasons Pugsy and others have well articulated -- it's not data capable (other than usage). I agree with DreamStalker -- an APAP machine will give you more options than CPAP and since you're going to use this machine for many years, more options are better than fewer options.

Regarding a mask -- I began with nasal pillows (smaller form factor) and have moved on to a full face mask, which I like more than I thought I would. If you mouth breathe and can/want to use nasal pillows, you'll need a chin strap and/or tape to keep your mouth closed. The type of mask you use (nasal vs FFM) may also depend upon the pressure your doc prescribes.

Please know that CPAP therapy can be a long journey -- it takes some time, trial, and error to get it right, and then, of course, conditions change again. Just be tenacious, stay with it. Good luck, p

[Mary Z]

Post edited -reading all the comments my opinion has changed. My experience with the AUTO may not be common, but I found that as the machine ramped up to treat apneas, the higher the pressure (above a certain point) the higher my AHI. Nimbus- you certainly do have severe apnea. I had an AHI of only five when I was diagnosed, but jumped on the chance to try a cpap because my symptoms were so bad. I would fall asleep eating breakfast and on my feet. Driving was out of the question though I was foolish enough to load up on 5 hour energy and red bull and go to appointments where I would promptly fall asleep. Then I would load up on the same concoction to drive home. It's a miracle I didn't have an accident. I'm glad you're here if you have any time after your reading YouTube has some great videos on the subject.
Good luck,
Mary

[DreamStalker]

Glad to know I am in good hands!

Pugsy: That blog is simple amazing. Thank you so much for that link. It really spells out how to handle exactly what I was asking. You are a savior!

One last quick question before I run off to sleep (11 am. Heh. Told you it's funky.)

Is an average of 118 events/hour over a sleep study... reasonable? It sounds crazy high to me. I don't think I've seen anyone else claim as high. They sleep doctor I spoke to was very clear though, every 30-40 seconds I had one. I just am curious if they measure that wrong somehow sometimes? Or if there is anything special I should do since that is apparently just crazy-high?

You're up there. My Dx was 102 and at that time the doc told me I was his second most severe case ... he also looked like he was in his late 20's to early 30's so being his second most severe case may not be saying much.

[DreamStalker]

I don't agree with saying AUTO is the best choice for a first machine, but I respect anyone's opinion on this matter. Depending on your pressure needs the doc may order CPAP, a Bilevel, or an AUTO. Many people prefer the AUTO as it is quite flexible- able to run as a straight CPAP (most have expiratory relief which lowers the pressure on exhalation), or as an AUTO. The reason I don't believe AUTO is the first choice is that when you have a wide open prescription, or when used for titration it takes the machine awhile to ramp up to the pressure you need. If you have mixed apneas or central apnea the machine tends to ramp up to treat the apneas and when you have a central event the machine cannot treat it effectively and it ramps up higher and higher perhaps causing more central events. This was my experience with AUTO as the machine ramped up higher my AHI grew worse. Still if your pressure needs vary when you're on your back and on your side an AUTO is the machine of choice as it will vary the pressure according to your needs. Some people have more apneas on their back than on their side. In that case if your pressure needs are fairly low a CPAP at the highest pressure you need to treat your apnea may be fine. If your need is much higher on your back and on your side an AUTO may be preferable.
Though an AUTO is more flexible in its operation many people do not need one, and for the same reason- more flexibility- it is preffered in many cases. If you have not checked out YouTube there are videos about all the types of machines. If you have mixed or central apneas an ASV may be the treatment of choice. Good luck.
Mary

If he was not prescribed and ASV to begin with, he needs to start somewhere. He is better off starting with an AUTO. Only when he can prove that the AUTO is not working well enough can he convince the doc to Rx an ASV or bi-level ... hence my recommendation to rent the machine for the first couple of months.

In other words, not everyone gets to start out with an ASV or BiPAP and short of that the AUTO is the best one to start out with.

[jnk]

118 events/hour . . . crazy-high?

Yes, that is high. My AHI was 114.7. Sticking around here helped me a lot.

The tech at my titration found I did best on bilevel. I had my doc write "patient may use an auto" (his wording) on my Rx. That allowed me to argue that I wouldn't sign for anything less than an auto. That is how I ended up on autobilevel.

With that high an AHI, your body may not understand what is going on at first as you adjust to PAP therapy. That is OK. Stay the course. It may be a bumpy runway, but once you get therapy tweaked and get airborne, you may find yourself to be a completely different person mentally, emotionally, physically, and spiritually. That has been my experience, anyway.

[chunkyfrog]

Auto machines may also be the best choice for apnea with a strong positional component.
My DH (dear husband) is one who could not tolerate a machine always blowing at therapy pressure,
so he sleeps on his side a lot (where apneas are rare)--the machine has him "covered" should he roll onto his back.
Let us know if you have any problems--someone most certainly has "been there" before.