Another newbie -

Hello Everyone, I was diagnosed earlier this year, although my HMO (Kaiser) Never did have a 2nd meeting after my sleep study, and I also was not fitted with a CPAP for the 2nd half of my night sleep study. I did not hear from them until recently when I was contacted to make what I thought to be an appointment with the Dr. It turned out to be a class on how to use my CPAP machine instead! we had a choice of the nasal mask or the nasal pillows, without even getting to try either one first, just a "Well which do you want?" and then guessing what one would work, I like to sleep on my side or mashed into the pillow. The latter no longer being an option, I am slowly getting used to it. At least I found out my apnea is "mild". Not sure what all numbers from the sleep study are relevant

From reading here and another forum, I learned to loosen the straps on my Optilife, and that has helped me not take it off after about 4 hrs of use. Last night I actually was able to leave it on all night after about 7.5 hrs of sleep. My nose is a bit tender when I wake up but better after the strap loosening. I have facial hair so I imagine a full or modified full mask is not an option? The Optilife has the vent that shoots it straight out so if I am turned toward my wife it may end up irritating her. The prices of the masks are such I cannot afford to keep trying different masks so I am not sure what to do there, Kaiser as I said gave 2 choices. Prices seem awfully expensive for a bit of plastic, but then if it is medical I guess that is just the Facts of Life.

I am interested in the software and Card reader beings I am very computer savvy and spend WAY too much time on it. Is the software helpful? Is there any lower cost providers of the software anywhere? Anyway, I'll likely continue to lurk, try to learn about masks and such and try to contribute if I happen to have anything to add, although I'm still in the very early learning stages with 1 week of use behind me I doubt I'll have much to add

..Jay

Hi, welcome to hosehead land ! Well, you have a good machine, and will be able to read your data with it (and being a computer guy will help too), but really I don't know that you'll find less expensive software as it's such a unique thing (only 2 programs - the one you can get through Cpap.com plus - and it's optional - one that a long time member here designed to be used with the first one and give better readouts) plus there is only one card reader that you can use with the card for the machine. As far as your masks go, you might consider something like a Quattro or Hybrid (full face) because 1) they're known to be good, plus very popular, especially for people with beards and that matters (you're correct in thinking they can make masks hard to fit), and 2) being full face, you'll have the option of using them not only at times that you might have a cold (apparently they're better than nasals then), but also if you discover like so many of us do, that you do sleep with your mouth open a lot and nasal masks just don't work in that situation. I'm in Canada, so don't have the same issues with DME's & insurance, but what happened to you sounds pretty standard. However, you shouldn't be limited to the choices they gave you and I'm sure the insce. co would be quite happy to pay for equipment from Cpap.com rather than the almost double price the DME will charge them - but you need to check and find out of course, because I'm only guessing. Good luck!

As far as the software and card reader: Resmed, Respironics and Fisher & Paykel recently imposed MAP (minimum advertised pricing) policies on the online DME suppliers. Call the various online DME suppliers offering the software and card reader on their toll-free numbers and ask them if they have an "unadvertised sale price" for them to find the best price.

twofactors in HongKong has about the best price I've heard of for the Mako Infineer DT3500 cable reader for the Respironics. It seems to be it was about $25 US plus about $7 US for shipping and takes 10 days to 2 weeks to arrive.

Since you have Kaiser, you must be in the USA. You have a LEGAL RIGHT to copies of your medical records under HIPAA. The results of your sleep study are part of your medical records. You should supply Kaiser w/a written request for copies of the doctor's dictated results AND the full scored data summary report w/condensed graphs from your sleep study.

Resmed, Respironics and Fisher & Paykel will supply FREE to the local DME supplier most any of their masks models that patients have tried and been unsuccessful with IF the DME supplier fills out a form and returns them W/IN 30 DAYS. There is NO excuse for being offered a choice of only two styles of mask and not being fitted PROPERLY for that mask. Once your proper therapy pressure has been established THE MASK IS THE KEY to successful CPAP therapy.

You may find that Ayr Saline Nasal Gel or Spray will help toughen up the nose and lip area until you get comfortable w/your mask.

Hi Jay, and welcome to the board!

Jaybo wrote:I like to sleep on my side or mashed into the pillow. The latter no longer being an option, I am slowly getting used to it.
----
The Optilife has the vent that shoots it straight out so if I am turned toward my wife it may end up irritating her.

Sleeping "mashed into the pillow" is still an option. There's one mask in particular that suits many people well for sleeping in any position, including on one's stomach. The "Headrest" nasal pillows mask by Aeiomed.
https://www.cpap.com/productpage.php?PNum=1717&PAID=215

Don't let the picture of it fool you. Looks ridiculously cumbersome and heavy, but it's not. It's actually very lighweight and unobtrusive. It also looks (in the picture) as if the airhose has to run down the back of you head, but it doesn't have to at all. Many people rig a hose hanger on the headboard or wall to hold the main air hose overhead. The connector hose on the "Headrest" mask can be routed up to the hanger too, so it is completely out of the way.

One of the nicest things about the Headrest mask is where the vent is placed (up at eyebrow level) and directed (straight up.) The exhaust flow doesn't hit anything -- not the bed partner, the bed covers, the pillow, your arm... not anything.

There are a ton of topics about this mask, which has gone by other names in the past: Aeiomed Aura, then Headrest, then Invacare Twilight NP, then back to Headrest again.
LINKS to HeadRest nasal pillows mask topics
viewtopic.php?t=3098

There are also some neat "Lab Rat" fixes for it, including removing all the headgear if a person wants to get adventuresome:
LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

Jaybo wrote:The prices of the masks are such I cannot afford to keep trying different masks so I am not sure what to do there, Kaiser as I said gave 2 choices. Prices seem awfully expensive for a bit of plastic, but then if it is medical I guess that is just the Facts of Life.

I agree about the ridiculously expensive prices for some plastic and velcro. Yeah, that "medical" label.

Here's a bit of good news, though. If you do get yourself a Headrest mask and it doesn't suit you, I'd be interested in buying it from you -- used, and even if you've removed the headgear ('cause that's what I'd do to it, anyway.)

PM me your email address and I'll be glad to send you the Provider manual for your machine if the DME didn't give you that.

It seems to me that Kaiser should be able to present you with the same warranty manufacturers such as Respironics and ResMed give DMEs. My DME says the both those manufacturers and others give a 30 day warranty. If the mask doesn't work you return it to your DME and they work with the manufacture to get their money back.

Do you have to use Kaiser as your DME?

I am a side sleeper and really like my ComfortLite 2 (CL2). It is stable and even though it looks bulky and heavy, it is light. However, I may try the Headrest next, as the headpiece on the CL2 tends to irritate my eyebrows. It has been wonderful to have just the forehead piece though and no other straps on my face to irritate. Now to get rid of the forehead piece and try the Headrest.

Be certain to get several sizes of nasal pillows to find the ones that fit without rubbing. I took a larger size than I first thought. The CL2 comes with several sizes of nasal pillow, nasal direct (small mask that fits over the end of nose and not comfy in my opinion), and nasal mask.

I have had to quit using my machine because when I wear the mask I become extreamly claustraphobic what hae you folks done to combat that feeling

claustraphbic wrote:I have had to quit using my machine because when I wear the mask I become extreamly claustraphobic what hae you folks done to combat that feeling

Keep wearing the mask......

I can imagine a coffin being MORE "claustrophobic" than a little piece of plastic and silicone on my face.

WHICH mask? Which machine? What is your pressure?

Quitting is NOT an option!!!

Den

Hi, Jaybo. Welcome!! I'm fairly new at this myself, and those who already have answered you and I'm sure will be checking back are the ones to help with your questions. I just want to say this:

I'm glad your condition is mild and not severe, but it still means your brain and the rest of your body are doing without life-giving oxygen every single time that you sleep without your mask. I'm not insensitive to your claustrophobia, but I was wondering if it would help for you to tell yourself (out loud, if necessary) that you won't need to deal with that mask much longer; that a better one is coming? It might sound stupid, but things like that actually work sometimes. At any rate, I hope you'll grit your teeth and strap that mask on every single time you sleep. We want you to stay around, and we don't even know you. Imagine how your family must feel. Please do what it takes and hang in there. The people here will be able to help you a lot and quickly.

Marsha

p.s.

-- Within half an hour of when Wulfman/Den asked for the details about your equipment, it was added to your profile.

-- Part of what Den requested was the pressure at which your machine is set, but it's not there. (Perhaps you sent him a PM? It still would be good to list it in your profile, IMO.)

-- You're computer savy, and it's clear that you can read.

I'm thinking you don't know what your pressure is, and no one told you. If I'm wrong, go to Edit Equipment in your profile and plug your pressure in the Additional Comments field. Yes, that's an order. Do it now.

If you have a copy of your prescription, the pressure will be on it. You're looking for a single number between 4 and 20 (more than likely) or a range for those numbers (low of ##, high of ##). Here are some examples of how it might be written (taken from https://www.cpap.com/cpap-faq/Prescriptions.html#132):
Example: 9 CM/H2O
Example: 9
Example 14 CM/H2O
Example 14
Example: 4-20 CM/H20
Example: 4-20
Example: 6-18 CM/H2O
Example: 6-18
...........................or even one of those numbers/ranges CMS

If you don't have a copy of your prescription and don't know what your pressure is, go for a fast answer first. Call Kaiser and get them to tell you over the phone what they set as a pressure on your machine. If they try to tapdance, remind them that you have a legal right to that information. You do. Assuming they'll do that over the phone (they might invoke HIPAA and request your physical presence/signing a release), go back into your profile and add that info. That's right... orders... do it now.

You do need to have and keep copies of your prescription and all sleep study results. I know I've seen specific suggestions posted by Slinky on the best way to go about that, and I'd recommend that you send her a PM if you need any help. Or maybe she'll see this and just post it.

Marsha

marshaeb wrote:I'm thinking you don't know what your pressure is, and no one told you.

BTW, lest there be any misunderstandings about intent, attitude, etc. (all good and positive, I assure you), please allow me to add a few words at the beginning of the paragraph that's quoted above.

So, because it's obvious that you want to provide as much information as possible, and because your machine's pressure wasn't included with your equipment information, ....


Marsha