Newbie Needs Advice...

[trekker]

Hi all, I was recently diagnosed with mild sleep apnea and am waiting a prescription from my Dr. At this point I really don't know that much about my condition. The lab tech said that she could not answer questions about my pressure, # of events, etc. and that I would have to wait to talk to the doctor. I went for the follow-up sleep study (with CPAP) last night and as a result of my experience and my limited research I have a few questions.

1. I like to sleep in a cold room and breath cold air, with the heated humidifier on, I felt like I was suffocating, turn off the heat and the conditions improved. However, I have allergies and really need the maximum amount of moisture to keep my sinuses open. Is it possible to increase moisture without increasing heat? Are some humidifiers better than others at delivering more moisture?

2. Is it possible (or beneficial) for a person with mild apnea to get an auto cpap? I don't know my ending pressure, but I do know that the tech started it at 5. I was told that the insurance had certain requirements for an auto cpap. I'm assuming my mild condition would not warrant the machine. Could I pay the difference and get one anyway?

3. I tried several nasal masks and pillows. Both of the pillow masks I tried leaked, but they did not have different size pillows to try. Are pillow masks generally easier to leak for a person who is an active sleeper? Or did I just not have the right size pillows?

4. Two of the nasal masks I tried collapsed enough (even when not very tight) that they rested on my upper lip making for an unpleasant experience. Is that common?

Anyway, sorry for all the questions. I've just turned 40 and the idea of wearing this contraption for the rest of my life has me at my wits end. Thanks in advance for your help.

[Janknitz]

I can answer some of your questions, and I'm sure others will chime in:

1. I like to sleep in a cold room and breath cold air, with the heated humidifier on, I felt like I was suffocating, turn off the heat and the conditions improved. However, I have allergies and really need the maximum amount of moisture to keep my sinuses open. Is it possible to increase moisture without increasing heat? Are some humidifiers better than others at delivering more moisture?

Some humidifiers are considered "passover" humidifiers and they don't require the water to be heated to do their job. Ask about those when considering which machine to get. To keep your sinuses moist, there are a couple of things you can do:
a. Use a saline nasal rinse or mist regularly.
b. Drink plenty of fluids
c. You could try a room humidifier rather than one attached to your CPAP. Not sure if this would help, but it's worth a try.

2. Is it possible (or beneficial) for a person with mild apnea to get an auto cpap? I don't know my ending pressure, but I do know that the tech started it at 5. I was told that the insurance had certain requirements for an auto cpap. I'm assuming my mild condition would not warrant the machine. Could I pay the difference and get one anyway?

My understanding is that the insurance company doesn't care what machine you get. There is basically one HCPCS (reimbursement code) that covers all but the fancy biPAP machines, the insurance company pays one flat amount. It's the DME provider who will try to convince you not to get an auto or data capable machine, because along with setting the reimbursement rate, your insurance company sets a maximum out of pocket cost you must pay. So the DME will try to provide the cheapest machine possible and they pocket the difference. Don't fall for it. Insist on a data capable, auto machine. If they tell you something different, make them show you the limitation in the "Evidence of Coverage" which is the contract between you and your insurance provider (you have to specifically request a copy of this document--they never provide it unless you ask). My bet is that this limitation doesn't exist. Change DME providers if you run into a brick wall--you can check out online providers as well.

3. I tried several nasal masks and pillows. Both of the pillow masks I tried leaked, but they did not have different size pillows to try. Are pillow masks generally easier to leak for a person who is an active sleeper? Or did I just not have the right size pillows?

Nasal pillows are tricky for newbies, but they are really the best option for active sleepers because they are so lightweight and don't get pushed around as you move. Depending on the brand, you may get several sizes of pillows to try in your package, but I think others you have to order the size you need. The general rule is to go with the largest size you can, as those are less likely to leak. But you have to experiment, both with the headgear and the pillows, to find the right adjustment. Some people swear by putting a little lanolin cream on the nares to help the pillows seal, but this actually made my pillows more leaky in one nostril ( but not the other!).

the idea of wearing this contraption for the rest of my life has me at my wits end.

Thinking about wearing this contraption for the rest of my life makes me want to run screaming from the room, too. Just take it one night at a time. That's all you can do.

One morning soon you will wake to this amazing feeling of peace and calm because your body didn't have to spend all night struggling to get oxygen. That's when this starts to become a positive instead of a negative.

Hang in there--it will happen.

[trekker]

Wow! Thanks for the detailed response and so quick as well. I do typically use a nedi pot (actually the squeeze bottle type) but did not use it last night before the test. That sounds like something that might actually help. Also, I've never been one to drink lots of fluids; in fact, I don't drink as much water as I should. Sounds like a good reason to start.

Thanks for the info. about the DME's. I visited one yesterday and the RT actually told me that if I wanted the S9 to make sure the Dr. wrote that on the prescription (I was amazed she offered that advice...seems unlikely given what I've read here about profit motives). The reason I asked is that the lab tech told me that most ins. companies required certain requirements be met before they would pay for an auto machine (i.e., having more severe apnea). I have BCBS and was also told that they would typically do a 10 month "rent to own."

Also, has anyone noticed that the nasal pillows are harder to breath through? It sure felt like it to me...maybe it was just the particular models I was trying.

BTW, thanks for the encouragement...I know that my issues are very mild compared to what many here are suffering, but it sure helps to have someone to talk to who's "been there."

[echo]

Also, has anyone noticed that the nasal pillows are harder to breath through? It sure felt like it to me...maybe it was just the particular models I was trying.

I've had the same problem , I've tried a Breeze and the Liberty .. Also i just couldn't get the hang of them. I love my activa.

But many people LOVE their nasal pillows

Welcome the forum! I hope you will soon love your cpap for the improvements it will bring to your life!

[trekker]

Also, has anyone noticed that the nasal pillows are harder to breath through? It sure felt like it to me...maybe it was just the particular models I was trying.

I've had the same problem , I've tried a Breeze and the Liberty .. Also i just couldn't get the hang of them. I love my activa.

But many people LOVE their nasal pillows

Welcome the forum! I hope you will soon love your cpap for the improvements it will bring to your life!

Thanks! I tried the Activa last night, but the bottom of the mask compressed until it was resting on my mouth...is that normal?

[echo]

NO no no no no no no no no .... with the Activa it needs to be as loooooooooose as possible. Well not entirely, but first put it on, and adjust the lower straps until it's just resting (or a little bit more pressure) on your upper lip, but do NOT pull it in all the way). Then adjust the top straps so it's just slightly resting on the bridge of your nose, and also adjust the little angle thing until it feels right. Turn the pressure on and readjust - the top can be very loose, the bottom can be a bit tighter.

Sorry for this horrible description, but basically with the Activa you do NOT want to overtighten it, just enough so that it's resting comfortably on your skin. Move your head around, scrunch up your face, and tighten it just so that there are no leaks. Then hopefully it will never ever leak again.

Or maybe I totally misunderstood your comment, and they gave you a size too large.

What I've found is that (my head is small, probably the brain too ) so I have to hitch up the lower straps so that they're resting around my ears, rather than below them. Otherwise I get leaky leaky leaks. It seems to stay in place like that, more or less. And I also have to hitch it up a bit so that it's higher on the bridge of my nose, pretty close to my eyes - that's prevents the mask from going into my mouth.

Does any of that answer what you were asking???

[trekker]

Actually it does, I do think that the mask was a little too big, but it was a medium/small and they said that they no longer made just a "small" in that mask. Maybe it was the adjustment, the tech did have it cinched down not really tight, but very snug. Also, it did seem to slide down on my face. I tried it with the gel cushion (again in a medium), but the gel seemed to fold inward until the bottom of the mask was again resting on my mouth. I understand that they make the gel version in a small...I'm thinking I might give that a try.

[fiberfan]

Also, has anyone noticed that the nasal pillows are harder to breath through? It sure felt like it to me...maybe it was just the particular models I was trying.

I have to have little to no nasal congestion to use the nasal pillows. With hayfever season underway I use a FFM mask lots more than I do my Swift FX. Even with the FFM mask I notice the congestion more, good thing sudafed works well for me and makes me sleepy. When trying masks before my titration sleep study I found myself getting breathless quickly with a nasal mask so I didn't use it in my sleep study and haven't tried in the 1 1/2 months I have been on cpap.

[Marietjie]

Trekker - Welcome!
This is what Ryckman wrote re sinusses and humidifier....



Reply with quoteTwitter this postReport this postRe: cotton mouth
by Ryckman on Mon Mar 22, 2010 11:31 pm

I have the same troubles. I found that despite the setting on my built-in humidifier, I still wake up with a dry mouth or sinuses. I have had success with these steps and I suggest you try it...

1. "Pre"-humidify your bedroom. Buy a tabletop humidifier from CVS/Target/Walgreens/Etc.
2. Buy a humidistat (it tells you the real room humidity) for about $10-$30 depending on how fancy you want to be.
3. Using these two devices, keep your room humidity between 40% and 55%.

If your room is to arid (15-25% humidity) your sinuses/mouth will dry out. If it's too humid (60%+) mold/mildew could start to grow (not to mention, your skin will feel sticky).

I live in Maryland and here, during winter, my house was down to 20% or lower during the driest months. IT WAS KILLING ME!!! No matter how awesome your CPAP machine's humidifier is, that little sucker can't compete with your cavernous, desert-like, bedroom.

Now, I sleep much better! I hope this helps you.

[trekker]

Fiberfan, I struggled with breathing regardless of the mask that I was on...I just thought it was a "part" of the process.

Thanks Marietjie, that's good information and make sense as well. Why can't they make a humidifier for cpap like they do a "cool-mist" humidifier for homes? Cool water flows down a vertical support (radiator like with holes in it) and air is blown across it. It seems like that would work much better than just blowing air across the surface of water (horizontally).

[nosbig17]

Regarding your humidification: If you can't get enough humidity with an in room humidifier, then you might try to get a pass-over humidifier that has the largest surface area. The largest one that I know of is a Resparinics that has roughly a square foot of surface area. https://www.cpap.com/productpage/respir ... ehose.html

[Nord]

Fiberfan, I struggled with breathing regardless of the mask that I was on...I just thought it was a "part" of the process.

Thanks Marietjie, that's good information and make sense as well. Why can't they make a humidifier for cpap like they do a "cool-mist" humidifier for homes? Cool water flows down a vertical support (radiator like with holes in it) and air is blown across it. It seems like that would work much better than just blowing air across the surface of water (horizontally).

Hi trekker

Masks are a very, very personal issue. What works very well for some does not work at all for others even when they have the same size face/ nose. Most DME's have a 30 day trial period with masks that is supported by all the big mask manufacturers... I have found I really need that.

Give any mask a reasonable tryout and read instructions/ watch video for fitting. Make notes about sizes and differences for future choices.
They all make different amount of noises, exhaust air in different directions and in different amounts, they all have different sealing issues that you need to work around.

When you suffer from "not enough air"... it can be because of a ramp feature that doesn't get enough air flowing right away or something else about masks that most people do not discuss.

Smaller mask volumes in masks can leave you struggling for air at some points... that includes Nasal Pillows when you choose between Small, Med and Lg... they all have different volumes and can "feel" different when you struggle to breath.

Advice about which mask for you is good to give you a list of masks to try and sizing is all over the place... you'll take small in one, med in another and extra large in yet another. It's not very pleasant trying them... but you'll find out what you like and don't like.

Nord

[trekker]

I thought I would let everybody know an update. Went to the DME today and picked up my equipment and learned that my pressure was set to 14! That was a shock to me as I was told that I had mild sleep apnea, I was expecting numbers in the 5-8 range. Anyway, I was hoping for the Resmed s9, but the tech said the doctor preferred Respironics because he could have the data automatically sent directly to his office via a phone modem that attaches to the back of the unit. According to the tech, if I got the S9, the doctor would have to get the report from the DME instead. Doesn't sound right to me, but what do I know.

Anyway, I was prescribed a PR system 1 with the humidifier. Got a Respironics Comfort Gel FFM and a Resmed Swift LT (had to purchase that one myself, but wanted another option due to allergies). So that's where I am...I still have a LOT to learn, but hopefully I'll be able to get some sleep tonight.

[Gerald]

Trekker.....

Software has been available for your machine for just over a week......I suggest that you contack CPAP.com......and get the details.

Being able to get a written report from your machine is critical....it allows you to manage your own therapy. Just remember, NO ONE is as interested in your therapy or your success with it...than you are.

Getting software....and generating your own reports probably triples your probability of success!

You can't manage what you can't measure. Go fot it!

[trekker]

Trekker.....

Software has been available for your machine for just over a week......I suggest that you contack CPAP.com......and get the details.

Being able to get a written report from your machine is critical....it allows you to manage your own therapy. Just remember, NO ONE is as interested in your therapy or your success with it...than you are.

Getting software....and generating your own reports probably triples your probability of success!

You can't manage what you can't measure. Go fot it!

Thanks, but how do I get the information out of the machine to the computer? They plugged in a phone modem where the sd card goes.