Got dianosed with severe obstructive, have questions

[jnk]

Your post took me back to my early days:

viewtopic.php?f=1&t=35379&p=303637#p303637

[Pugsy]

Is an average of 118 events/hour over a sleep study... reasonable?

Yeah, it's high but I have seen people reporting upwards of 200 events per hour from their sleep studies.
It's an overall average. Most likely you had some periods of time during the night where you had more events and some periods with minimal number of events.
Example might be supine sleeping...you might have had 150 events during an hour of supine sleeping and maybe 50 per hour when sleeping on your side. Or maybe REM sleep was worse. That's what goes on with me. During REM stage sleep my AHI was around 60 but in non REM sleep it was only 12 per hour...but those 12 per hour times involved some massive long duration of events with Oxygen levels dropping to the low 70s. So even without the REM events...and with a relatively small number of events in non REM sleep...it still got pretty ugly for me.

The end result is that it there's more to severity than the number of events.
The medical field likes to have "numbers" to gauge things. That's just the way they do things so they come up with the AHI hourly average thing. Gotta start with something I suppose.

APAP machines being "better"....sometimes they are and sometimes they aren't but since they also offer cpap mode...why not have the APAP mode available...again better to have it and not need it than need it and not have it.
My REM stage sleep events...sometimes my pressure needs for those events fluctuate rather dramatically. Sometimes I need 18 to 20 cm pressure and other times I get by just fine with 10 cm. If I were using a cpap only mode machine I would have to use 18 to 20 all the time to cover those "sometimes" when I need more pressure. I would much rather use 10 cm for 80 % of the night than 18 cm for 100% of the night....and let the machine take care of the 20 % of the night where I "might" need more pressure.

Now some people don't do well with APAP mode...changing pressures can be disruptive to sleep....but again...better to have it and not need it thing.

Don't worry about what the AHI was....worry about reducing it to an acceptable level with the mask and machine and go from there. I would suggest starting with a nasal pillow mask...it's the easiest of all masks to get and maintain a good seal. Much less "stuff" on the face to be annoying.
Finding the right mask is probably the hardest part to all this therapy.
Get the heated hose...you may not need it but I am a firm believer in "it's better to have it and not need it than to need it and not have it".
You will want the humidifier...again while some people do fine without it..most people will need at least some added moisture and again..better to have it and not need it than need it and not have it.

Just keep reading...there's lots of stuff to absorb but it will eventually all come together for you.

[Nimbus]

Great advice from everyone, truly. This is so much more than I had hoped to learn, and I feel really equipped for this now. Thanks!

New Question: Insurance got back to me. They cover everything past my deductible of $1000, assuming I stay in network in some Durable Medical Equipment brick and mortar store. That said, it looks like I wouldn't be paying much more than that just buying online out of pocket for the APAP/Humidifier/Mask.

And from what I've read those medical stores can be real awful to get what you want. And they may even try to break the "Up to $2500" thing if they can, since I am kind of wanting the best equipment I can get.

Any suggestions on that?

[DreamStalker]

Great advice from everyone, truly. This is so much more than I had hoped to learn, and I feel really equipped for this now. Thanks!

New Question: Insurance got back to me. They cover everything past my deductible of $1000, assuming I stay in network in some Durable Medical Equipment brick and mortar store. That said, it looks like I wouldn't be paying much more than that just buying online out of pocket for the APAP/Humidifier/Mask.

And from what I've read those medical stores can be real awful to get what you want. And they may even try to break the "Up to $2500" thing if they can, since I am kind of wanting the best equipment I can get.

Any suggestions on that?

I still think that until you get the sleep study results, it would be best to wait on deciding what and where to purchase. You may be better off renting to start until you figure out whether you need a more advanced machine than an APAP.

Having said that, I think some have purchased from cpap.com and then submitted their claims to their insurance for reimbursement ... if your insurance allows for that.

[cosmo]

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.

If you want to get the full effect, gotta change your ways. CPAP treatment will reduce the apneas but you still might be tired due to weight and inactivity.

[Julie]

Hi - I agree with everyone's great advice to you here except for one point (I tend to be kind of rabid about it ), and that is that from the sound of your original note, you likely are a mouth breather, and often people become that on cpap even when they weren't to begin with - all the air being pumped it can do it, so if I were you I would go for a FF mask and don't listen to those saying they're necessarily leaky. Mine works for me (years and years) and plenty of others are quite happy and have great therapy with them. You can always try something else afterward but the thing to do is get fitted properly, rather than just trying to do it alone, in the right size, and preferably lying down if possible. You'll possibly end up giving tiny tugs to it one way or the other once it's on (even after years) to seat it properly for you, on a given day (even gaining or losing 5 lbs can make a diff.), but from the sound of your 'state', I wouldn't fool around with a half baked answer for too long.

Also remember that whatever pressure(s) you're titrated to are NOT because of the severity of your apnea, but geared to how much air it takes to stent open your throat... which may be a lot, but not necessarily, and you can always play with pressures in future if you lose weight and are doing better.

Good luck!

[Pugsy]

Find out which DMEs in your area are part of your insurance network.
Call them up and just ask...I will be getting a cpap machine very soon and I want so and so machine...will you give me what I want without a hassle or do I need to continue shopping?? Make sure you know exactly which models do what and what the names mean.
If they won't dispense what you want...go on to the next DME on the list and call them.

You do need to also check with the doctor and find out for sure if you are going to need a regular cpap/apap machine or one of the other models....like a bilevel machine.
Bilevel pressure machines cost more but if your pressure needs are high or you have trouble exhaling against pressure you may be a good candidate for a bilevel machine.
If you had many centrals show up on your sleep study...you might even need a much more complicated bilevel machine than a regular bilevel machine or cpap/apap machine.

So you need to find out what general category machine you are going to need to be using along with what pressure you might be using. This needs to be done first. If you have plain jane vanilla OSA and don't need high pressures...the S9 AutoSet would be an excellent choice but if you happen to need say 15 cm pressure...you might want the S9 VPAP Auto because it offers additional exhale relief above what the AutoSet offers.

[DreamStalker]

Hi - I agree with everyone's great advice to you here except for one point (I tend to be kind of rabid about it ), and that is that from the sound of your original note, you likely are a mouth breather big time, and often people become that on cpap even when they weren't to begin with - all the air being pumped it can do it, so if I were you I would go for a FF mask and don't listen to those saying they're necessarily leaky. Mine works for me (years and years) and plenty of others are quite happy and have great therapy with them. You can always try something else afterward but the thing to do is get fitted properly, rather than just trying to do it alone, in the right size, and preferably lying down if possible. You'll possibly end up giving tiny tugs to it one way or the other once it's on (even after years) to seat it properly for you, on a given day (even gaining or losing 5 lbs can make a diff.), but from the sound of your 'state', I wouldn't fool around with a half baked answer for too long.

Also remember that whatever pressure(s) you're titrated to are NOT because of the severity of your apnea, but geared to how much air it takes to stent open your throat... which may be a lot, but not necessarily, and you can always play with pressures in future if you lose weight and are doing better.

Good luck!

I re-read his OP and I cannot see how you deduced he is "likely a mouth breather big time".

A FF mask does indeed work best for some ... not so good (or at all) for others.

Even if you have the perfect facial morphology that the specific mask design was based on, there are other factors like sinus sensitivity to pressures from the silicone cushion, oily skin, headgear fit, and the fact that the lower strap tension of FF masks pulls the jaw back towards the throat with potential to exacerbate apneas.

Again FF masks work great and even perfect for some, no argument there. But all masks have their pluses and minuses and there is enough diversity in peoples anatomy and other conditions that any mask could work for a new patient -- even if they are mouth breathers.

[jnk]

I, too, think masks are a highly individual thing. I had definite ideas about what I did and did not want in a mask--until I used a few and found out that what worked for me was very different from what I expected to work for me.

Maybe some people are fortunate enough to make a go of it with the first mask they try, but I think that for many of us, we don't know we have the right mask until we've worked with a few for several nights in a row.

[Nimbus]

Ok, update time.

I got my CPAP Machine. S9 Autoset. Haven't changed any settings really from the clinics so it is in CPAP mode. Pressure is 13. It claims my previously severe 118 AHI went down to 1.1 last night. Somehow. That seems insanely severe to me, but you all would know if that is even possible to reduce that much. Still no sleep study to give however, my doctors office, the sleep clinic, the insurance, and DME provider have managed to bounce it around 10 times in confusion but I have yet to get a copy. Soon hopefully.

First off, which software do you all prefer? ResScan or SleepyHeads? (Think I got those names right). Just whichever provides the most/best presented data would be good by me. That said, I have no SD Card reader. Will any from a store do? Could I use my phone to read it and attach that? Once I get that all sorted I can upload better information.

What settings do you all recommend I set? I have Temp Control at 80 atm. Humidity at 4.0 (Out of 6) but it still makes my lips/nose feel very dry. I think everything is set up though... How about the bells and whistles? Should I swap it to auto? 7-15? Should I use EPR?

Also; I don't have like.. any accessories yet. I have the Machine, the Humidifier, Tubing, and Mask. I know I would like nasal strips since I tend to look like I got in a fight after I use the machine. But I read that mask wipes are nice? Anything else to make this experience better?

And last but not least, I seem to be swallowing air when I use the machine. Quite a lot. I have felt gross both days I have used it so far like I constantly need to burp, nearly to the point of nausea. Are there any ways to avoid that unfortunate sensation?

Sorry for the new barrage of questions, just hoping to get everything set up and moving in the right direction before I get into bad habits.

[Pugsy]

Try both software products...SleepyHead and ResScan to see which one you like using the best. The same data is offered just visually different.

Please add your equipment to your profile. It helps us help you faster and better.

What mask are you using?

If your computer doesn't have a slot for the SD card then you will need a reader/adapter. Cheap generic will work from any store will work and doesn't have to be something fancy. Just plug it into a working USB port. Around $10 at Walmart...sometimes a little less.
If your computer does have a slot for SD cards then you need nothing else.

Your humidifier settings point to using the slimline hose...I assume you didn't get the Climateline heated hose.
You may need to increase the humidity setting or get the ClimateLine hose...
You may also be mouth breathing....that's why I asked which mask you are using. Mouth breathing will dry the mouth and lips for sure. If your mask covers your mouth...mouth breathing can still dry the mouth but the humidifier may not be able to add enough moisture. It's a problem a lot of full face mask users have. If your mask is a nasal only interface and you are mouth breathing a lot then you are likely losing therapy pressure.

Yes, it is possible to reduce your high AHI down to almost nothing. It's done all the time.

I wouldn't go changing anything in the setup right now except maybe EPR which is strictly comfort relief.
You need to look at your reports and see what is going on before you go changing things.
Swallowing of air...if you aren't using EPR...use it and set it to 3. This will reduce the pressure during exhale by 3 cm and maybe help. The swallowing of air and the associated discomfort is called aeropahgia...read this
wiki/index.php/Aerophagia
If you are having symptoms with aerophagia using APAP mode with a 15 maximum is not something you want to do.
You would want a lower than 13 max...not allow the machine to blow more air into your stomach.

APAP mode can be used by people with aerophagia problems but it has to be fine tuned.

Regarding any of the other cool sounding accessories...up to you. I use plain soap and water to clean my equipment.

[Nimbus]

Sorry about that, certainly a newb mistake. I've added the information.

I am almost definitely breathing through my mouth. Not trying to obviously, but it is why I got a full mask to begin with. (Significant Other pointed it out for me.). Still having the dryness, so not sure if I just need to live with it or what. Should I up the setting to 5 or even 6? I've heard bad things about getting it so high.

The only reason I mentioned the AHI is it went from insanely high to low with literally no involvement on my part. They picked a settings and magic. It sounded like it would take a lot more.

I'll get a SD Card reader and get a report going and post it up here in the next day or two tops.

About to head to bed, will try the EPR setting. I'll leave the CPAP at 13, was just hoping APAP would be viable given the issues. I'll wait though since I certainly don't want to make anything worse!

One last question and it is a bit of a doozy. My sleep schedule is uh.. Weird. I work overnights, so sleep mornings. Except during my weekend which is inverse of that. I also generally split my sleeping out of long standing habit to do so in order to not fall asleep and crash (Which hopefully will be fixed!). But my machine seems VERY confused about what is going on. It is switching 'days' mid sleep session. Is it possible to make it convert days over at like... 5-6 PM? Those are generally my only guaranteed awake hours.. Is my data getting botched due to this swap occurring?

Thanks for all the information again! You all are real life savers, especially you Pugsy!

[Pugsy]

Increase the humidifier setting..see if it helps the dry mouth but most likely it won't help enough. The humidifier just can't deliver enough added moisture to rehydrate the mouth...the oral cavity is just too large.
What bad things have you heard about higher humidifier settings? Rain out...if so while its annoying it isn't that big of a deal and fairly easy to deal with. This would be where the ClimateLine hose would come in handy...much less chance of rain out while delivering a nice 80% humidity. Might want to see if your DME will get you one.

Go to the store in the mouthwash section and look for Biotene products. They are made especially for dry mouth problems.
I hear the gel is pretty good. Also common sense thing....drink plenty of water. If you take meds that potentially dry things out...try taking them earlier during the day if you can. Some people do just "live with it" but it doesn't hurt to try to limit it if we can. No sense in being miserable when there are things to try that might help.

Put your worries about the pressure and your pre cpap AHI aside. Pressure needs have nothing to do with AHI numbers. Pressure needs are based on the airway tissue and what pressure is needed to keep the airway open.
Has nothing to do with AHI at all. There are people who have a low pre cpap AHI (like maybe 15 to 20) that need 20 cm to hold the airway open and there are people who have AHI much higher than yours who only need maybe 7 cm pressure.

We can revisit your pressure settings (and maybe APAP mode) and aerophagia issues once you try EPR of 3 and see if it helps or not. APAP mode might help in that it would let you use maybe a lower pressure for the bulk of the night (thus reducing chance of aerophagia) and then increase the pressure for the other part of the night that the events need more pressure.

One other thing..try to breathe through your nose as much as you can. When we do a lot of mouth breathing it seems like it increases the chances of swallowing air. If you can get in the habit of breathing through your nose more it might help the aerophagia...can't guarantee it but it might.

[Pugsy]

Forgot about the time issue.
Resmed machines have a clock and it is set to start a new day at 12 noon. Makes for some really weird looking reports for day sleepers.
You can change the clock so that you can make it start at new day at a time where you will have already completed your "night" of sleep. Your times will be off but who cares?
Changing the clock time is reached through the clinical set up menu. Easy to do. Just move it ahead so that the new day starts when you know you will be awake for the rest of the duration...like 6 PM or whatever.

[ems]

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.

Try some Lanolin cream... the kind nursing mothers use. It's called Lansinoh but the generic is fine and cheaper. Most of us here use it on our sore noses.