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sztoomuch
01-21-2008, 01:15 PM
Ok, this last Friday (1/18) I got my first CPAP machine. My dad uses one, so I am somewhat familiar with them. Now, however, I have to wear one, and I have a few questions for those experienced folks out there. I have an Ultra Mirage II mask (Nasal Pillows), the CPAP setting is 11, and the humidifier is set at 3 (range is 0-5):

What do you do when you have to swallow? Sometimes my throat is so dry that I swallow at night. With the CPAP on, this causes my ears to plug up. Now, I am currently adjusting the humidifier so that I don't have to do this, but right now, I do. I have resorted to taking the mask off, swallowing, then putting it back on.

How do you clean your gear? I have tried soap and water (not so good) and 1 part vinegar/3 parts water. The vinegar works better, but the gear smells of vinegar. I suspect that it doesnt completely air-dry, even though I wash it in the morning, rinse it off, and put it on in the evening.

I have sneezed once into my mask. That stank. Of course, it blew the mask off. I had to take everything off, wash it (the vinegar solution) thoroughly, dry it (using tissues made for cleaning glasses) while falling asleep. What do you guys do?

I have been told by the healthcare provider to use distilled water for the humidifier. Is deionized water good enough, or do I need the distilled water? Also, is there something that can be put into the water to help with nasal dryness, or do I have to use some sort of nasal spray/drops?

Like many, I am a mouth breather. So, I have a chin strap. That darned strap is literally giving me a headache...I wake up with one. I tried wearing the mask before going to bed for a few hours without the chin strap...no headache. Is there a better chin strap out there?

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Ol'Line Rebel
01-21-2008, 01:55 PM
Hi, I don't know much about this stuff (my husband is just starting), but I suspect vinegar as with most fluids will absorb into the rubber and even some of the plastic you are washing. Rubbers and so on tend to be rather porous, so it shouldn't be too surprising that they adopt some of the scent of what washes over them.

bethsheba
01-21-2008, 04:56 PM
Ok, this last Friday (1/18) I got my first CPAP machine.

Congratulations! Although they may take some time getting used to, I think you'll see a big improvement in your quality of life...more energy, better concentration, an overall happier feeling, grin.

...I have an Ultra Mirage II mask (Nasal Pillows), the CPAP setting is 11, and the humidifier is set at 3 (range is 0-5):

Although I have nasal pillows, I haven't used them so I can't help you much there. If your throat and nose are dry, it suggests one or more things: you're still breathing through your mouth and not your mask, you humidity setting isn't high enough, or you may need a heated humidifier if you don't already have one.

...How do you clean your gear? I have tried soap and water (not so good) and 1 part vinegar/3 parts water. The vinegar works better, but the gear smells of vinegar. I suspect that it doesnt completely air-dry, even though I wash it in the morning, rinse it off, and put it on in the evening.

I use a mild dish soap as it is convenient and cheap. Vineagar would be better because it is a mild acid and would kill mold and some bacteria. They also have a cleaner you can use, which I bought and like (it smells nice), but just don't use. It may be that your vinegar/water solution is too strong because the vinegar smell should dissipate over the day. What did your durable medical equipment provider say? Did you ask them? Masks are made by out of different "recipes" so the instructions for cleaning one mask may be different than cleaning another mask. Oh, and after I clean my hose, I hang it over the shower rod to dry...seems to work well for me but our humidity is dry here, especially in the winter.

I have sneezed once into my mask. That stank. Of course, it blew the mask off. I had to take everything off, wash it (the vinegar solution) thoroughly, dry it (using tissues made for cleaning glasses) while falling asleep. What do you guys do?

The pits! I can't imagine cleaning my equipment before going to bed...what do I do? I've got "back up" supplies for unexpected times like when I'm too tired to clean my equipment, for when I wake up in the night and step on my mask (a big crunch here followed by an "oh, shoot" or at least something that sounds similar to "oh, shoot"), and for when my kittens decide to play with my hose by poking additional holes...Once you find equipment that works for you, you may want to get back ups. Insurance companies often replace supplies on a regular basis (sometimes every 6 months) and if yours does, you could keep your old stuff for back up. Otherwise, there are places to get new brand name equipment that are quite reasonable...but in my experience these places weren't associated with local hospitals or durable medical equipment suppliers.

I have been told by the healthcare provider to use distilled water for the humidifier. Is deionized water good enough, or do I need the distilled water? I don't know. I only use distilled water.

...Also, is there something that can be put into the water to help with nasal dryness, or do I have to use some sort of nasal spray/drops?

I would encourage you to try raising the humidifier and getting a heated humidifier if you haven't done so already. No need to complicate things if you can solve the problem without meds, whether they be over the counter or prescription.

Like many, I am a mouth breather. So, I have a chin strap. That darned strap is literally giving me a headache...I wake up with one. I tried wearing the mask before going to bed for a few hours without the chin strap...no headache. Is there a better chin strap out there?

Yes, I'm a mouth breather, too. Chin strap didn't work for me either. If you got a headache wearing the chin strap, it suggests that the strap was on too tight (this can happen if your mask is on too tight, also). I found that I stopped breathing through my mouth when the humidity was good, and when I wasn't congested. Sometimes I still get congested (we all get colds now and then) but then I have a back up full face mask that I can use.

Hope this helps...I'm sure others will have some other ideas...again, it kind of takes time to find out what works for you (and what doesn't), but in my experience, it's worth it!

Bethsheba

sztoomuch
01-21-2008, 05:38 PM
Yeah, I have a heated humidifier. Six settings, 0-5. 4 and 5 are too much...very uncomfortable. So far, 3 is best. So, the heated humidifier part is convered. Actually, I would prefer a 'cool humidity' over a 'warm humidity' and definitely not a 'hot humidity'.:cool:

Technically, it isnt my throat that is dry but rather in the back of my nose, if that makes any sense. My wife tells me that I have not snored, but it is entirely possible that some air is escaping my mouth. Even with a chin strap, that can happen. One would need to tape the mouth closed to make sure that absolutely no air leaked.

I do get congested, though. Currently, I am using a nasal decongestant an hour before bedtime. This is somewhat of a concern, because I know that these can also cause a 'dryness' all the way in the back of the nose, very similar to what I am experiencing. I have only worn the thing for 3 nights now, so I have some experimenting to do. :p

The recommended strength of vinegar for washing out the headgear is 1 part vinegar to 3 parts water. That seemed to work ok, when I washed everything out at 7am. But at 9:30pm, everything still smelled like a salad. I also hang my stuff up in my shower, and that may be part of the problem. Perhaps I need to put it where there isn't so much humidity that it doesn't dry properly.

To be honest, I think I need a different mask. My nose is rather large to begin with, and as suggested, it is a good thing to have in case of colds or allergies. Well, it is certainly a challenge!

bethsheba
01-22-2008, 11:51 AM
.... One would need to tape the mouth closed to make sure that absolutely no air leaked.

I was going to try that but my respiratory therapist said "absolutely not!" Oh, well.

...I do get congested, though. My friend is a nurse and uses a netti pot or is it a neti pot...saline solution swooshed in the nasal passages...many people swear by this as it helps and is med free. Me, I'm afraid of drowning, :D, but I will try it eventually.

But at 9:30pm, everything still smelled like a salad.
:D:D:D

To be honest, I think I need a different mask. My nose is rather large to begin with, and as suggested, it is a good thing to have in case of colds or allergies. Well, it is certainly a challenge!

I personally think it's a good idea to have an assortment...that way pressure points are rotated and you've got back up for different situations.

Bethsheba

sztoomuch
01-22-2008, 12:30 PM
Well, now I am sure. I woke up at 5am this morning with air coming out everywhere...out of my mouth, nose, and nasal pillows. It took a little while to wake up, but eventually I just took the mask off, turned the machine off, and slept for another hour.

It is going to take some time to get used to this thing. :(

bethsheba
01-22-2008, 09:35 PM
sztoomuch,

Oh dear, how very frustrating! At least you know what's going on. Do give your health care providers some feedback as they may have some suggestions.

Is there a reason you chose nasal pillows over something else? I ask because I think my insurance company dictated the first mask I wore, but after reading about other people's experiences I demanded to try other masks. I settled on the third one but am open to others as I go along. You might be surprised to learn about how many different choices there are out there....oh, and some people "rent" until they can find something they want to live with.

Bethsheba

sztoomuch
01-23-2008, 12:51 AM
sztoomuch,

Oh dear, how very frustrating! At least you know what's going on. Do give your health care providers some feedback as they may have some suggestions.

Is there a reason you chose nasal pillows over something else? I ask because I think my insurance company dictated the first mask I wore, but after reading about other people's experiences I demanded to try other masks. I settled on the third one but am open to others as I go along. You might be surprised to learn about how many different choices there are out there....oh, and some people "rent" until they can find something they want to live with.

Bethsheba


Why Nasal Pillows? Well, actually you nailed it. When I had my sleep test, it was done with nasal pillows. It took me 2 hours to get to sleep during that test. The sleep doctor prescribed the pillows. I did bring up the possibility of a different mask with him, he told me to try the nasal pillows first. So, that is what I am doing. I almost tied them in knots this morning, though. :rolleyes: It will take some time to find the right settings.

My dad, bless his heart, switched over from a full face mask to nasal pillows once he heard that that was what I was tested on. He is now doing very well with them. I have already spoken to the gal at the medical supply place that I am renting the mask from. She thinks that I should go a week before switching. Time will tell.

TacEMT
01-27-2008, 01:45 PM
I tried the nose pillows for the longest and could not use them, i was defeating the purpose of the c-pap because i couldn't wear it. I switched to the mask and a really good chin strap and i have not had any problems. I prefer the Gel mask that you can actually mold to your facial features thus greatly reducing the leaks. Play with the heater settings on the c-pap, i was using mine at a 5 and was getting rain out and just by going to a 4 made a huge difference. I had an unheated humidifier with my first machine and i had horrible sinus infections because of the humidifier. I talked to my doc when i was having congestion problems and she gave me a nose spray that i use before i goto bed and i havnt had any infections or congestion. Good luck!!

sztoomuch
01-29-2008, 07:39 PM
I have talked to many different people that use nasal pillows. The people that seem to do the best have custom-fit pillows rather than a choice between small, medium, and large. Several people have related to me that their nostrils are not the same size whereas the nasal pillows are, which makes for a tight fit for one and a leaky fit for the other.

According to my respiratory therpist, I should go another week before making a decision, but I really want to ttry another type of mask, either a gel nasal mask or a full face mask. It would be very interesting to take some sort of poll to find out how popular the different types of masks are.

On the good side, I am definitely getting more sleep. Unfortunatly, not continuous sleep, but a lot more than I was getting before the CPAP machine! Thanks much for your encouragement. I will keep you all posted as situations warrant. :)

sztoomuch
02-05-2008, 06:33 PM
Ok, now I have a question.

The mask that I use (Ultra Mirage II with nasal pillows) leaks consistently in two different places. First from the mask itself (before the air even gets to the pillows...getting a new mask just because of that) and second from the side of one nostril over the pillow. Not both nostrils, just the right one. I have tried using using more lubricant, using different lubricants, changing lubricants, using just water, nothing works. I am using the large size pillows, so I can't use a larger size. There must be others out there that have slightly different sized nostrils...how do you handle it? Or do you just use a nasal mask rather than nasal pillows? :confused:

bethsheba
02-06-2008, 06:08 PM
Ok, now I have a question.

There must be others out there that have slightly different sized nostrils...how do you handle it? Or do you just use a nasal mask rather than nasal pillows? :confused:

I don't use the nasal pillows but I have a friend who uses them and loves them. While I haven't checked with her about this, I do think her pillows are tapered so a difference in size wouldn't be a problem...I have no idea what kind she wears, I'll have to ask.

Bethsheba

sztoomuch
02-07-2008, 03:05 PM
Well, I went to see my Respiratory Therapist yesterday, and she gave me a new mask. I was able to demonstrate to her how the nasal pillows leaked. She came to the immediate conclusion that I could not use nasal pillows. Since I was already using the large size nasal pillow, she could give me nothing bigger to help.

Anyway, last night was my first on a nasal mask. It sure delivers more pressure than the nasal pillows mask did! And it certainly doesn't leak. But it is a big thing, and because of the way it is made I cannot put on my glasses. So, I can't read myself to sleep. :mad: And when my wife wakes up at 3am and reads, I will have to learn how to put up with it.

Still, if you can find out who makes nasal pillows to take care of such a situation, I would be greatly in your debt.

bethsheba
02-07-2008, 08:09 PM
... Since I was already using the large size nasal pillow, she could give me nothing bigger to help.

Well, that's interesting. It sounds like your therapist may be only dealing with one manufacturer, but I don't know. Our therapists started a Sleep Disorders Support Group. One of the most helpful programs I attended was about different kinds of equipment...they had, if I recall, different sales representatives from 4 or 5 different companies. Different individuals in our support group would then volunteer to talk about what they liked, what they didn't etc...so we at least had an idea of what equipment might meet our needs.

... But it is a big thing, and because of the way it is made I cannot put on my glasses. So, I can't read myself to sleep. :mad: And when my wife wakes up at 3am and reads, I will have to learn how to put up with it.

I've got a comfort gel nasal mask which I don't consider to be big...but, I can't use my glasses, either. I think that's the biggest drawback to the masks, :(. Does your wife have a sleeping disorder, too?

...Still, if you can find out who makes nasal pillows to take care of such a situation, I would be greatly in your debt.

I will try to find out...both friends live out of the area so I will have to send a note or call, but I should be able to find something out.

Take care.

Bethsheba

sztoomuch
02-11-2008, 12:46 AM
Well, my therapist does not use only one manufacturer, but they definitely have a very strong preference. So far, the nasal mask has proven the best as far as delivering the prescription pressure. But, it does have other drawbacks, and is definitely big whereas the nasal pillows seem to be the least invasive and the easiest to get used to.

My nasal mask smells of rubber. It did when I first took it out of the bag, so I read the instructions and found that there is a procedure to take care of that. Unfortunately, it didnt work completely. The remaining smell is not that bad, and probably will go away within a couple weeks. It is, however, starting to wear a red spot on the bridge of my nose. I have been very careful not to overtighten the mask. A friend who is also a nurse recommended gauze.

Last night I slept 10 hours, but not continuously. Perhaps 6 hours/4 hours. Boy, did that feel good! So sleeping is going well. I still want to try another mask, though. Since I am a confirmed mouth-breather (as attested to by my wife), a full face mask will be the next one I try. But that will be in a while. As it is, I have given up on the chin strap as it really doesnt prevent me from breathing thru my mouth. I am still very interested in getting a nasal pillow mask that would fit, but it looks like I would have to buy one out-of-pocket to do that.

bethsheba
02-11-2008, 10:34 AM
Well, my therapist does not use only one manufacturer, but they definitely have a very strong preference.
I sometimes think they get "perks" for their recommendations...my insurance company paid $75 for a 6 foot hose. When I lost my insurance coverage I had to pay out of pocket for my equipment so I did some comparison shopping. I found the IDENTICAL hose for $9.99 and it was delivered to my door!

...My nasal mask smells of rubber.
I never had this problem but my mask is of a soft plastic, and then of course, the gel.

... It is, however, starting to wear a red spot on the bridge of my nose.
Your experience reminds me of "mask number two"...it felt as if I had an arrow going through my forehead for 2 days!!!! Got rid of that mask immediately! For masks one and two, my nurse friend recommended mole skin which protects the skin. I haven't used it since I've gotten my nasal gel mask.

.... I am still very interested in getting a nasal pillow mask that would fit, but it looks like I would have to buy one out-of-pocket to do that.
I'm glad you're sleeping better. I will try to call my friends tonight to see if they have anything to recommend. Again, there are many places to get info about nasal pillows.

No need to be intimidated about those out of pocket expenses. As I have said, I have no insurance and found that changing/maintaining my equipment isn't a major problem (it wouldn't be a minor problem, either, except I am currently unemployed). Some durable medical equipment dealers offer insurance, for a small price, so if you buy equipment that doesn't work for you, they'll refund your money and you can try something else.

Hope that helps...and again, I'll try to call my friends tonight...I haven't forgotten. Am just procrastinating, :rolleyes:

Take care.

Bethsheba





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