Trying for the first time again

[Guest]

4 years ago I developed snoring that was intolerant for my partner. I went through the usual channels, 2 sleep studies, machine, mask. Never stopped snoring. Doctor was unresponsive and had a jaded attitude. Stopped seeing him after the CPAP follow up. I used the machine faithfully for over a year until the mask I'd been using (Resmed Quattro FX) got to the point of interfering with both our sleep with its constant leaking and squealing. Replacing the parts didn't seem to help, and the local supplier is worse to deal with than the doctor. I've gotten back to using it, but still get kicked out of bed as much for the mask making noise as me snoring if I weren't using it. It looks like the lousy supplier left town and there isn't another doctor, but if I have to drive to find someone decent, I will.

The thing I'm wondering about is back when I joined this forum, some people talked about a data capable machine that tracked your treatment night to night. The doctor wasn't open to that, and his staff had never even heard such a thing existed. The machine that I have is PR System One REMstar. It doesn't always turn on, and has said on the screen that it needs service. I see my GP tomorrow and I want to ask her if she'll write me a script to get equipment. I'd rather avoid having to drive 30-50 miles to see a specialist if I can avoid it. Any advice on what machine to get?

[codinqueen]

Congratulations for trying again. With the right machine and especially the right mask, you can be successful in getting your sleep apnea treated, become more healthy, get more energy, and have minimal noise in your bedroom while sleeping. The S-9 makes no to minimal noise when you have the right mask. Right now, this web-site is very slow, so you might not get as many responses as you normally would. Few of us have the patience to wait for the pages to load, and then wait for the posts to load. We are hopeful that the website admins are working on fixing the problem soon.

Anyway, my honest opinion is that you need a ResMed S-9 automatic machine and see if you can try a different mask. I personally like the Swift FX, and I think there is a possibility you can find a slightly used one here on the board, or possibly any other mask you might like to try. For the price of shipping, I think someone offered a Swift FX to Kona a few days ago- you could search for the post. Another member has a Swift LX for sale for $50 and shipping. Check the thread called "The great pillow exchange" -there are some masks on there for sale or trade, as well as new cushions and nasal pillows. The masks make noise when the cushions or nasal pillows get old, since they don't last forever. Kona had a few masks he was selling this past week. This is the most inexpensive way to get masks, or you could buy on-line with an insurance program that would allow mask exchange from the website for additional price. Cpap dot com is a good one, and is run by the same administrators as this website. To order a mask on-line, you will definitely need a prescription that says "CPAP mask of pt's choice" so you are able to try different types. If the Dr orders a certain mask, that is all you could buy. So be sure to get an Rx from your Dr that says "mask of patient's choice". It could take several masks until you find the one that is for you, just don't give up. I don't know if your Dr will order you a machine and mask without a sleep study, but you need to get a data-capable machine so you can monitor your therapy. The ResMed S-9 automatic machine can be programmed to cover different pressures depending on what your body requires throughout your sleep-time. If you have medical insurance, I doubt they would pay for a machine & supplies without another sleep study, and even then you will most likely need to reach what they call "compliance" within a certain length of time, for the insurance to make the payment.

I hope other users will chime in and give you more info. Some members here sell machines at reduced rates, and sometimes you can find machines or masks at reduced rates on Craigslist and the Craigslist items don't require a prescription. You can build a mask by buying pieces without a prescription, but you would need to know what parts you need to purchase from cpap dot com or ebay to put a mask together. Some thrift shops also sell masks on occasion, and some members have extras they would sell inexpensively or give you for the price of shipping. The members here will help you as much as they can, but you will need to register, and not be a guest. Registration is still free.

You are signed in as 'guest', but you say you "joined" this site several years ago. You will need to sign in under your user name from when you first registered if you want to be able to receive private messages, which you could need if you want to try to find some used masks or machines from some members here. Some members sell unused masks or machines, you would need to be able to receive PM's to communicate with your address. Or I guess you try to re-register using a new username if you aren't sure what it was back then. Maybe Johnnie or another member could instruct you on how to resurrect your old registered name.

Good luck! This is becoming a book, so I will sign off now.

[Julie]

Why haven't you tried other masks - there are tons out there!

[GeoMG]

Many thanks for the replies, I didn't realize I wasn't logged in when I posted!

Julie, you know how things start out tolerable and then degrade from there? That's kind of been my mask/doctor/supplier experience. I could never wear the mask as loosely as they recommended, so in hindsight, maybe I should have known that it wasn't working out.

codinqueen, thanks for the recommendations to discuss today. I guess part of my problem is that life is "good enough" for me without the therapy, so even though I know I have this condition and treatment is supposed to be effective, I haven't hit that "sweet spot". For a while, I was able to sleep comfortably with my partner while using the mask, but even that got worse over time. I forgot to mention that the machine too makes kind of a whining noise on my inhale that was driving her crazy until I stuck the machine under the bed. I don't know what happened, maybe something with my face changed, but even with new cushions and straps, the mask still leaks.

I'm glad you mentioned craigslist, as I hadn't thought of that. I figured there was a good chance they would want to send me to the sleep study. I'm glad to have a machine recommendation to talk about today. Thanks again for taking the time to reply.

[DEXSUZ]

Geo:

I was a lousy sleeper my entire adult life and began CPAP just over one year ago. I was the opposite of you: right off the bat, I had many of the problems you've mentioned but have found nocturnal bliss as I adapted to the gear and the way it works.I've got a simple program that did wonders for my adaptation to assisted sleep over the past 13 months and you may benefit from it. Here it is:

This is the four-step program I devised. I had a tremendous sleep study at the local krankenhaus but ran into a granite roadblock as I attempted to get accustomed to masks on my own. You might want to give this a try:

My main advice is to back away from immediately trying to do all-nighters with your full-face equipment. Use my four-step weekly plan WHICH WORKED WONDERFULLY for me:

1) During the first week sit, watch TV, or read with your equipment whirring away next to you. Get accustomed to the sounds, feelings of the moving air, and all the external trappings of the great chance at quality sleep you are nearing. Do NOT go to bed with the equipment.

2) Take the phone off the hook, draw the shades, evict everyone from the house, don't think about any nearby clock, and loosen your clothing as you lie on your bed in mid-afternoon. Turn on the CPAP gizmo, put the mask on your face, and close your eyes. Think peaceful thoughts, whatever they are to you. At some point in the week you WILL fall asleep. After you have this nap, you'll be amazed at what a refreshing experience it was.

3) During the third week have all your CPAP gear ready for action as you go to bed for the night. As you've done so many times throughout the years, you'll awaken far before morning. When you do, slap the mask on your face and turn on the CPAP gear before your groggy brain has any idea what's going on.

4) After successfully completing the first three steps at your pace, decide on a night (mine was March 3rd) when you have full confidence and will retire for the night WITH your mask on. You'll succeed!

My biggest mistake was expecting everything to go perfectly from the first night. One must be patient and keep anxiety as far away as possible. On March 3rd, I had a goofy sort of celebration to mark one year of refreshing sleep I never had - over four decades - before last year.

By the way, I went to bed at 10:30 last night and awoke at 7:45 this morning. That NEVER used to happen.

Best of luck and God bless.

[GeoMG]

Dex, Thanks for sharing your system. Surprisingly, I don't really have a problem with the sensation of the equipment strapped to my face. It's the equipment continuing to disturb my partner and occasionally myself that needs help. But I fortunately scored a script for a mask at least from my GP, but she wouldn't write one for a machine. I did find out that there are several pulmonologists about 30 minutes from home to choose from, so I plan to see someone and see what they have to say, and go from there.

[robysue]

Dex, Thanks for sharing your system. Surprisingly, I don't really have a problem with the sensation of the equipment strapped to my face. It's the equipment continuing to disturb my partner and occasionally myself that needs help.

These machines (including the PR System One Plus you are using) are objectively very quiet---as in the decibels for the blower unit are in the mid-to-upper 20s, which is about the same as a whisper.

But that objective measurement of loudness means nothing in a super quiet bedroom once you start to notice the noise. Even a small noise can seem overwhelmingly loud when the overall environment is very quiet and the noise is obnoxious or unwelcome.

And then the noise may not even be coming from the blower unit. It may be coming from the mask leaks or it may be the hose is magnifying the sound of your own breathing.

The fact that things got better when you put the machine below the bed indicates some of the problem may be machine placement and conducted noise. Conducted noise gets into our heads through the bones in our skull that lie just behind the ear. Conducted noise bypasses the outer and middle ear and enters the ear in the inner ear---so earplugs can make conducted noise worse by eliminating all the ambient noise coming in from the outer ear.

Things to try:

Hose placement. Make sure the hose is not touching your partner or your partner's pillow. You may want to try to prevent the hose from resting too much on your own pillow as well. Sometimes a hose hanging system will help.

Mask and mask fitting. Sounds like you're still looking for a mask that works for you. You should not have to overtighten the straps to eliminate the leaks. Mask liners may help as well.

Exhaust flow and where the mask is located relative to your bed covers and your partner's head. The intentional exhaust flow from some masks is much noisier than the blower unit. And if that exhaust flow hits the covers or a pillow, it can get mighty loud at times. The fix is to work on making sure that there is enough room between the mask's exhaust vents and anything solid---your pillow, your covers, your chest, and your partner's body.

A pleasant ambient noise of some sort to compete with the undesirable noise from the machine. A lot of people find that a sound machine which plays nature noises throughout the night useful. Some people find white noise, like that generated by a plain old fan helps to mask the noise of the machine, the leaks, and the magnified sound of your own breathing. I use an iPod playing Gregorian chant music all night long to mask the noises from the BiPAP. The key idea is that the competing noise needs to be a soft, quiet noise too. You're not trying to drown out the noises from the CPAP, you're just trying to give your mind an alternative, more pleasant noise to focus on.