Long winded request for suggestions. :)

[WillCunningham]

Howdy,

I am new to the forum and am really excited to have found a place with so many CPAP users. CPAP has totally changed my life and I almost feel like a zealot when I talk about how amazing it is. I have had great results so far but I have run into some rough patches and I am hoping I can get a few suggestions to smooth things out.

I am very interested in upgrading my mask as I am not very happy with the ComfortGEL line. I am also very interested in APAP vs CPAP. I figure the best way go about this is to start is by describing my experience so far so. That should make the places where I might improve things easier to spot. I want to apologize in advance for the length of the post, even my appologies for the length of the post tend to be long winded. lol.

I am fairly sure I had been suffering from OSA for at least 3 years prior to getting the official diagnosis. I am a very large guy, floating in the 500-600 lbs range and it is almost unheard of to not have OSA in that size range. The year prior to the diagnosis was definitely the worst, my ability to concentrate and work was totally destroyed. I could not even accomplish simple tasks that I had done hundreds of times in the past. I had no energy at all. The best description I have for how I felt was that I felt like I was wearing an extremely heavy lead suit. I felt so awful that I finally gave in and spoke to a doctor about it. The doctor was almost certain I had OSA so he scheduled a sleep study for me. With my fathers OSA experience to go by, I had suspected as much myself.

By that point I was in really bad shape. I would pass out against my will all the time, I couldn't think straight, I couldn't play video games or watch TV, and I was nearing the point where I would have to quit work due to lack of ability. I was really well past the point I should have quit or been fired, so I was fairly desperate to get things moving. The sleep study was scheduled for 3 weeks later, and they said it would be 3 weeks after that before the results would be in. Facing 1-2 months more of being soo tired was almost too much, but I made it.

I got my results and prescription. My brain wasn't working that well when I got the results and I don't remember all the details, just that I definitely needed the CPAP and that they had to use allot of pressure (17cm) to keep my airways open. They used a ComfortGEL mask at the sleep center and were able to make it work for me. I got my GoodKnight 420G unit and my first ComfortGEL mask a few days later.

I had a technician from the medical equipment company stop by my house to show me how to use the equipment. She showed me how to fit the mask to my face and that the mask does not need to be too tight to make a good seal. She showed me how to turn on the machine and set the ramp time. I have a pressure prescription for 17cm, that was pretty hard to get used too. I had trouble dealing with the pressure just trying it out while awake.

I had a lot of anxiety that my mask was not tight enough, when I moved my head to either side I could feel leaks forming around my mouth and face. I ended up tightening the mask till it was uncomfortably tight but definitely sealed. I don't know if it was the tightening or just the natural progression of things but I eventually noticed that I felt much more energetic and my intense lethargy was gone. I weened myself from caffeine and was still wide awake during the day so I knew I was meeting with success.

It has been about a year and a half now. I have had a few incidents worth noting. After about 4-5 months I broke my ComfortGEL mask. The slot where the headgear attaches on the bottom of the mask snapped off because I had the mask so tight. I superglued the strap to the mask and ordered a new one. When the new mask came I noticed a noticable improvement in my alertness. I had not realized I had not been getting good sleep with the other mask. I wondered about it but just figured that my superglued mask didn't get the job done the 2-3 days before the replacement arrived.

About one month later, the part of the mask that has the pad for your forehead snapped on me after I had adjusted the straps too tightly again. I used the piece form the original mask and was ok. About two months after that, the bottom clasp broke, just like the first mask. I didn't play any games this time, I got a new mask that day even though it involved a paying a premium for it. I got hosed on that btw, it was around $200 where cpap.com has it for $63...grrr...anyway.. I got the new mask and once again I noticed a detectable increase in alertness after using the new mask.

I suspect the GEL part of it wasn't as flexible after 3-4 months of use and I wasn't getting as good a seal. It could have been the adjustment on the mask, it is hard to identify these things. It was frustrating as can be because that was the second time I had a situation where I had been getting less restful sleep and had not realized it because it happened so gradually.

The new mask had the clasp break as well. This time the clasp did not break off completely so I reinforced it and superglued it together. It was strong and held the headgear on with no more issues. Then the stupid forehead piece broke again. I superglued and put that back together as well.

The ComfortGEL mask has an adjustment where you can set the position of the forehead pad, it lets you align the mask correctly so you don't get leakage near the eyes. That slider broke on my newest mask and is very annoying.

I am very unhappy with the fragility of the comfortgel mask. I am positive that I am way over tightening the mask so it is really my fault, but it is still annoying when it breaks. That also makes the mask uncomfortable, it puts so much pressure on my upper lip that I feel like my front teeth are moving inward. I have been scared to change masks because I know this one works and I don't want to go back to the way things were pre-CPAP. I am annoyed enough now and have enough componets to coble together a spare so I am looking to try a new mask.

As a side note I know that I want to get a full face mask as a companion for whatever I end up with. I want one for when I get a cold. I fear getting sick more for getting stuffed up and not being able to sleep with CPAP than I do the getting sick part. It had not even occurred to me till I saw the video of a full face mask that it would solve that problem.

I have another issue with my equipment that I should mention. The GoodKnight 420G has been doing an admirable job, I do not really have an opinion on it because I am uneducated on the different machines available. I have the unit and the humidifier. The 6" hose was not long enough to reach my endtable comfortably, so I put the unit on the edge of my king size bed. That did not cause any problem for about a year. About 6 months ago I had the humidifier connected and full of water when I knocked the unit off the bed, it slid and the humidifier dumped water into the unit.

After it dried out, the unit would not turn on anymore. I was about to give up and replace it at painful expense, when I discovered that it did work. kinda. The way to make it work was to hold the "power" button while plugging it in. If I did that it would ramp up to the 17cm of pressure then the display would change to something like "ln 1n" and be generally "messed up". That said, the pressure appeared right and it got the job done, though it runs continuously now.

I have been making due with it, mostly because it worked and I thought it was really as expensive as the price the medical goods company charged the insurance company, which was not fully covered by my yearly "durable medical equipment" benefit. I am definitely considering an upgrade.

The way I see it there are a few major goals for me with my next set of equipment. I know I wear the mask too tight and that makes in uncomfortable, particularly the pressure on my upper lip/front teeth. I hate backsliding without knowing it. I am very interested in the newer units that have software so I can try and track my progress and see via the units data when I need to make an adjustment. One of the reasons I wear the mask so tight is to avoid leakage. With software data to experiment with, I would probably worry less about it and get a better fit. The newer machines have that auto-pressure adjust too, which is something I am very interested in.

My weight has been in flux quite a bit lately and I get nervous that my pressure rating could be inaccurate. If I am in an upswing with the weight, I might need more pressure. I also wonder how accurate one nights data can really be for something like that, an auto-adjusting unit would be like having a sleep study every night if I understand the technology correctly.

CPAP has become such a dependency for my quality of life I want to know more about it and really take charge and make sure I am getting the most benefit from my therapy. I don't want to let anything slip through the cracks.

My father swears by his ComfortLite Nasal Pillow gear, I was considering that because it would remove that pressure on my upper lip. I have a large kind of egg shaped head, which can make it difficult to get headgear that won't ride up. That is one of the reasons I have been reluctant to experiment. I looked at the video about the comfortlite setup and it mentioned that it was not designed for use with an APAP machine. I have no idea why though, so hopefully my research will turn up that tidbit.

My mother is using a nasal aire system, she is having awful luck with it. She has some claustrophobia issues and her trouble may be more related to that than her mask though. She has had issues with the headgear though and I suspect I would have them as well.

If you made it this far though this epic tale, I am surprized but appreciative. If you have any suggestions I would really love to hear them. I plan to continue my research and try to figure out what to try next. I am leaning towards a GoodKnight 420 unit with software support, debating about the APAP vs CPAP still....but I figure it would let me use the same humidifier I have now. Of course with the sore breathing muscles each morning, I might want to consider a BiPAP too...ugh. I have no idea what mask I should consider, there seem to be a bunch of options. Thanks for taking the time to read this.

Take Care,

Will

[Georgia Hosehead]

You might want to try the ResMed Activa mask, size L. A lot of folks here swear by it. It does not need to be worn very tightly; in fact, it feels almost loose enough to fall off the face. It allows either side sleeping and exhausts next to the hose input (minimal disturbance with a bed partner). It comes with an 18" hose, so you might be able to better place your CPAP. If you get an APAP, it could be locked into a CPAP mode if you desired. Good luck!

[rested gal]

Hi Will,

It was good that you wrote a detailed account of your experiences to date with cpap. A clear picture makes it easier for others to make suggestions.

If you want state-of-the-art (imho, anyway...lol ! ) I'd go for the Respironics BiPAP Auto with Bi-Flex. Can be set to work both ways at the same time...like an autopap finding the pressure needed throughout the night, AND like a bipap giving wonderful relief from pressure throughout the entire exhalation. With that machine, you won't have to wonder, "hmmm, which would be more comfortable for me...autopap or bipap?" You'll have both working together at the same time, in the same machine. If it turned out that you liked just bipap operation better, you can set it that way. And if it so happened that a single straight pressure suited you best, you could set the IPAP/EPAP pressure to the same number and have it work like a straight cpap machine. Very, very versatile.

Mask.... well, my suggestions would be:

ResMed's Activa if you want to stick with a "nasal mask" (covers the nose.) A LOT less apt to leak than that Comfort Gel thing. Just as Georgia Hosehead said, the Activa works with the straps worn astonishingly loose. Quite an amazing mask if you prefer a covers the nose type of mask.

Or, get a nasal pillows type of interface, my personal favorite kind of mask:

Aeiomed's Headrest (formerly called the Aura.)
Respironics' ComfortLite 2 (be sure it has "2" in the name.) For the two choices of nasal thingie you get, choose the "pillows" and the "simple cushion".
ResMed's Swift

Full Face mask: ResMed's Ultra Mirage FF

Click the link below to read discussions about several masks. The topics contain lots of useful tweaks to customize a mask to suit each person:
LINKS to MASKS - nasal mask, nasal pillows, nasal prongs

Good luck!

[Linda3032]

Will, re-read what Rested Gal wrote. She knows what she's saying, and I agree with her.

The first step is to get you on an Auto - and with your high pressure you will do very well with a BiPap. So get the cadillac and the Respironics Auto Bi-Pap. It's your health we are talking about here, and if you aren't compliant your health will deteriorate.

With the masks, that Activa is a good choice -- only if you are willing to mouth tape or use the Poligrip strips (they work by the way). Otherwise, get the UMFF (as Rested Gal said). There are ways to seal the full face masks -- using marine glue or tincture of benzoine. (Ya, we have lots of tricks up our sleeves)...

If you are able to get a new machine, and a mask that seals, you will feel lots better. Then we can help you fine tune the little things.

PS: Have your Mom get the Comfort Lite 2 (it must be the 2). As RG said, it comes as both nasal pillows and a nasal mask. Have her use the "pantyhose trick" to help stabilize them. She will get a good seal and they are more comfortable than the NasalAire. She should be happy with them.

[Linda3032]

Also, you can try stabilizing your current masks with the "pantyhose strap". It's just the leg of a stretchy woman's or little girl's "tights".

Put on your mask, and gently tie the strap around the mask and your head. Be sure not to block any of the exhale ports. The strap is very stretchy, so just tie it enough to help hold the mask to your face. That way you won't have to over-tighted the mask headgear. Maybe that will help avoid mask leaks.

[ufo13]

Will:

Welcome to the board! RestedGal and Linda3032 above have given YOU great advice IMO and I would direct your efforts to the suggestions offered by these two great ladies! They are right on IMO!

All the best!

Steve,
ufo13

PS: Sorry I left out GeargiaHosehead real good advice there also!

[WillCunningham]

Thanks for the replies, I really appreciate it. Those are definately great suggestions. I am realizing there is quite a bit of information out there to sort through, having some good suggestions has helped alot. The more I read up on this stuff the more I am surprized that things have worked out so well for me with my current equipment and pressure settings. lol. The equipment suggested really looks like it would make the whole experiance much more comfortable. Thanks again!

[Linda3032]

And Will, if this hasn't been suggested before, you need to get yourself a 10 foot hose. Good Grief, Man. No wonder you tipped your machine over.

[Yoga]

Will,

How old is your cpap machine? Cpap machines are usually warranted for 2 years. I remember that one person said she was able to get hers replaced even though water got in it.

My husband had his unit go kerplunk on the floor. Fortunately, no damage. We went looking for something really secure and found a Rubbermaid container with a dome top from Walmart (Rubbermaid Stack View, 21 gallon, bar code 71691-25329) for approximately $11. If you invert the top over the container, it provides a very stable arrangement. If the humidifier leaks, it will stay in the sturdy container but you need to elevate the machine so in case of a leak the machine itself will not get wet.

[Guest]

[quote="Linda3032"]And Will, if this hasn't been suggested before, you need to get yourself a 10 foot hose. Good Grief, Man. No wonder you tipped your machine over.

[WillCunningham]

I don't know exactly how long it has been that I have had this unit, I would guess anywhere between just under 2 years to 1.5 years. Even when I aquire a new unit it can't hurt to have this one fixed as a backup/travel unit. Of course even if I don't get it fixed it still works well enough to serve as a backup. I think I will call my DME and see what info they have. I doubt the unit could be adjusted for a longer hose in it's current minimally functional state.

I am surprized by how well it has worked leaving the unit on the edge of my bed. That one incident was really the only problem I have had doing that over the length of my therapy. I do crave a longer hose, that is going to be a priority for me. It is funny that you mention the rubbermaid trick, I started out using something like that as an endtable for the machine, for it's waterproof properties. The short hose made that less practical for me so I switched to the edge of the bed method. That does make me a little nervous because of how hot the bottom of the humidifier gets when it is running.

Thanks,

Will

[WillCunningham]

Thanks again for all the info! I just went to the DME and actually had a decent experiance there. I was exchanging my malfunctioning GoodKnight 420G for a loner system so they could send in my unit for warrentee repair. While I was there we spent about an hour going over masks so I could get a new one.

I tried the ComfortLite 1 and ComfortLite 2 nasal pillow masks, those worked well for me, but the headgear just didn't get the job done. It would ride up my head and could not be adjusted to stay put. The seal at my nose was really good too, so I think I could have had success. The one annoying thing is that with a pressure setting of 17 it did cause some air to leak out where the nose peice connects to the rest of the unit. That was annoying because it was at eye level and gentley blowing at my eyes.

I tried the Breese Nasal pillow setup as well. It had similar problems where it would ride up the back of my head. I was very pleased to have tried them because I would have always been wondering in the back of my mind if those systems might be the way for me to go.

I also had the opertunity to try the Aptiva mask suggested here. I had very good luck with that mask and decided to go with that mask. The headgear did not really have enough play in the straps for much adjusting, but I was still able to get a good loose enough fitting that feels secure. I was very impressed by how much I could move the mask without getting a leak. I am anticipating a great nights sleep and really loving this mask!

I really wish that I had been exposed to the variety of masks they had available to try on when I first got my cPAP as I am sure I would have chosen better than the ComfortGel I have now. In any event I am pshyched and anxiously awaiting tomorrow morning to see if I can detect any changes in my altertness.

[Doug]

Gee, this discussion sure makes me feel a bit better about my CPAP experiences. Will, your story sure has generated food for my thought and so have the replies. Rested Gal seems to be the self-taught type, which I can really respect.

I used to be convinced that my parents kept live bears in their bedroom, so bad was my father's snoring. We knew he used to stop breathing, and remember the sounds of my mother elbowing him saying "Breathe Frank!". My brothers and I were all wall-shaking snorers as well.

I can remember the home-testing unit (a one-week info gathering unit), and being sent a CPAP the day they got the unit back. The diagnostician called the later again that same day and said that she had not been around when they sent the CPAP or she would have sent oxygen as well. It sure got me committed to the sleep-lab testing!

I was only 170 pounds, seldom drank, never smoked and the technician at the lab assured me that I could not possibly be suffering as bad a level as the home-test indicated; that if I had, I wouldn't have been awake for the twenty minute interview, be able to stay awake at work, or even to drive a car the 15 miles each way.

Turns out she was wrong though. My apnoea was even worse than the home test indicated. This was my first indication that even the experts didn't know everything about the disorder.

But, all in all, life with the machine sure has been better. I've no real complaints except those about the fragility of the masks I've used, some of which are the most popular.

I've never even thought or heard of the taping and gluing I've read about here today.

Thanks all, for the enlightening advice you've offered (now if someone could just tell me how to tweak up the pressure on my GoodKnight 318).

Doug