Your Personal CPAP Success Story - Post Here

[iSnooze]

Welcome Sailor4you!

A pressure rating of 21/25 is quite high. I hope nothing broke when your mask sailed across the room. So glad to hear that you stuck with it.

I think this quote from you says a lot that most of us forget.

In closing, PLEASE DON"T GIVE UP ON USING YOUR CPAP/BIPAP MACHINE!!! These machines are life savers! Not only your life, but possibly your or someone elses family.

We know that cpap can give us a longer life but people who suffer from sleep apnea and aren't treating it can cause accidents that affect other people's lives.

Glad the cheap velcro and C clamp are working for you.

[brasshopper]

My first CPAP machine was a Remstar (Looks like a Remstar Choice, but I think it predated it, remote control was not an option), which I got back in the mid-late 1980's, I think...I just do not remember what year I got it. I was diagnosed with OSA by a pulmonologist who noted that a Cat scan of my lungs said that I had an enlarged primary pulmonary artery, he then asked me how I slept and if my snoring bothered my wife. A sleep study (done in home) confirmed the diagnosis. I recall the pulmonologist saying something about how in-home CPAP studies had just become available and how this company had just jumped on doing sleep studies in home and even that CPAP was just commercially available for in-home use.

The in-home study was really abbreviated. It did not have many channels - I think one eeg, and one breathing channel, an ET finger O2 sat meter and something else. I had a friend who worked in a sleep lab in the early 1970's and I would go there and hang out - he would have patients hooked up with 20 channels, including tumescence and leads that detected REM directly. I have had other studies and they have always had more leads to more different things than this first budget study.

Why would you want remote control on a CPAP? To allow the use of a long hose so that you could, possibly, put the machine in a different room. My wife complains about my current machine, my old machine was so much noisier. I considered building an insulated housing for the first one to reduce the noise. It needed to be set with an external gauge, and it had two settings, length of ramp and pressure. After the first few months, I never used the ramp, it was obnoxious not to be able to breathe as soon as I put the machine on.

It sucked down electricity (which mattered after the hurricane, and when I used it in the RV, it would pull a large battery down overnight all by itself). It drew 80 watts without a humidifier. It had the ability to hold a pressure once set (no internal gauge, it needed an external gauge for setting) and it spoiled me in one way - it had a huge flow rate, I was told that "it did not matter if my mouth was closed when I slept or not, the flow would hold my tongue in place". I still have it, I can breathe an O2 bag flat when set to 25 lpm, and I can't outbreathe this machine. But it is hugely noisy, like a small vacuum cleaner, and it blows just as hard when you exhale as when you inhale.

I have had four remstars in my CPAP/APAP use life. I bought one on eBay to keep at my fiance's house, one was purchased for me by insurance after I told them how old my first one was (and my doctor then wanted me to have pressure relief and automatic range setting which just were not in the old Remstar). Just today I got switched from my pre-2007 Remstar Auto to a new Remstar Auto - and I note that my prescription had been set from 10-25 and the new machine can only go from 10-20.

The auto range setting is important to me, I am in chronic pain and I can see differences in required pressure based on when I take meds, and if I take sleep meds - so no two consecutive nights will take the same pressure. I watched my pressures and indexes carefully, for a while I slept with a recording O2 meter and noted that I could see the machine increase my pressure when my sat went down and once I was happy with the combination, I just stopped reading the card and putting it into the software and so forth. I did note, at the time, that the pressure would sometimes go as high as 19. I presumed that the 25 top end was enough, now that this one only goes to 20, I will have to check the data.

I am on Medicare and get my supplies from Liberty, they do a great job, imho, I have needed stuff twice when my dog chewed my mask and left me with a taped together backup, and they shipped it express in those cases. I should get a mask whenever I can so that I have backups, but I have not. That will change, I have asked them to call me whenever I am eligible.

The worse experience I have ever had was when I got one of those hybrid nasal pillow/mouth masks. It didn't have a prayer of fitting me despite me getting the largest I could get, the piece that is supposed to go under my chin fit under my lip - but I have used pieces - the headgear and stuff, in emergencies - and they included a clothes clip that I have used ever since.

When I am home, I use an IV pole next to my bed, with a long hose. The hose goes from the CPAP up and through the IV pole, I use the hole where the bag hangs to hold the hose. I have also used a velcro strip. Then from there it drops to my shirt, where I clip the hose, and then it changes to the reduced diameter hose that attaches to the mask. The clip stops the shifting hose from loosening the mask. The hose going through the IV pole gives me flexibility.

I use the CPAP every night, including travel. I might fall alseep without it, but the snoring will wake me up and I will put it on in the middle of the night. I can recall being woken by my own snoring long before I put on the weight I am now carrying.

I used a MS Respironics Nasal Mask until I went to a sleep study and was put in Nasal Pillows by the tech, and it was so much more comfy that I switched and never went back. I am currently using the Resmed Swift FX. I have used masks for many years, more than 20 now, and, well, I have probably have had less than a dozen, total. I can recall sitting at a motel room with a bottle of superglue trying to repair a mask that had basically come to pieces because I'd been using it for years and all the plasticizer had evaporated from the plastic. I repaired it well enough to get me through the next few months and then did a walk in replacement. Yes, I stretch things way too far. I have replaced a hose because it cracked for the same reason - plastic too old. You can fix a hose with packing tape for a long time - collapse it over the cracked sections and then tape it. For the first 10 years I didn't use a humidifier at all, then I used a passive external humidifier which was a waste of time, and now I use a heated internal humidifier, which is another amazing improvement in comfort, and I fill it almost every night. The new one seems to be designed for tap water instead of distilled.

What I suggest to new people is: get a spare. Spare everything, if you can, hose, mask, power cord, and machine. My new machine finally gives me a spare machine that can APAP, but before that I had a machine that could run at a constant pressure. You need to sleep with the machine every night to get the benefit, which means that, well, I used to fly to Japan and would overnight in Hawaii because I could not sleep on the plane. Now they have portables you can wear around your neck for airplanes that run on batteries. You can get used machines on eBay, or from friends.

I knew one guy who took his mask off every night because he "couldn't breathe". I told him to get a machine with C-Flex or A-Flex or equivalent - he did, and never took his mask off again. It was the work of exhalation that caused him to take his mask off. Now that I have used a machine with one of the flexes, I will never again accept one without that feature except in emergencies.

I wish I knew exactly when I got my machine. I know that it was a long time ago, it was after 1984 when I moved to NY, and probably a couple of years after that. It might have been as early as 1987, but I don't think it was as late as 1992. In any case, I have used CPAP in some variation, almost every night for 20 years. If I have skipped as many as 30 nights in that time, I'd be surprised. Yes, I have skipped a couple, but I have gotten SO much benefit in terms of the way I feel and how rested I am, I just don't skip. And, believe me, today's high end equipment is head and shoulders above anything that was available in the early 1990's, it is easier to stick to the CPAP than it used to be.

But I hope to use CPAP for another 20 years.

[b360155]

This is my 100th post to the ApneaBoard forum. I wanted my century mark post to be something fairly significant and since I'll be coming up on my 6-month anniversary of CPAP therapy on 3/30/12, I thought I'd post some of my experiences and lessons learned thus far. My apologies in advance, this post may be rather long, but if you read through it, you might find something beneficial that can shorten your learning curve.
I. Sleep Study - I went to a sleep center on two separate visits. The first study was to confirm whether I had sleep apnea or not and indeed I did. My AHI was 16.3/hour during any stage of sleep and 43.1/hour in REM sleep with an oxygen content level as low as 72%. These results I was told put me in the moderate level of sleep apnea and a 2nd titration study was performed to determine which mask type and optimal pressure settings I should use in beginning CPAP therapy.
Lesson Learned: It is not easy to fall asleep in a strange environment with wires hooked up to you and knowing that someone is watching you sleep. I had my doctor prescribe some sleeping pills before I went and was glad I did as I don't think I would have been able to sleep much without them and the study wouldn't have been as effective.

II. DME - There are good ones and bad ones. Good ones are seriously interested in helping you find the right equipment for effective therapy. Bad ones are most concerned with profit margins. I felt mine was middle of the road.
Lesson Learned: Do some research on the internet before visiting with a DME to determine which type and brands of equipment you think might be best for your treatment. Ask questions and insist on equipment that you feel is best for your situation. Find out about insurance coverage and determine to what extent free mask exchanges are allowed and what the replacement schedule is for CPAP supplies.

III. CPAP Machine - My doctor prescribed a CPAP machine with a 10.0 pressure setting. After performing my own internet research, I determined the ResMed S9 had the performance and features that I desired. It had the lowest noise level in decibles and a high level of customer approval in reviews I read. My DME set me up initially with a Respironics PR System One. I inquired about the ResMed S9 and was able to obtain an S9 Autoset.
Lesson Learned: The DME may try to steer you toward a machine that has a limited amount of features where they can secure the highest amount of profit from what insurance companies will pay them. Although you may never use it, try to get an Auto CPAP machine where you have the option to choose either a range of pressure settings or a single setting instead of a straight CPAP machine that can only be set at a single pressure setting. Also, insist on a machine that is data capable which will help you greatly in your CPAP therapy. I was able to obtain a ResMed S9 Autoset with an H5i humidifier and Climateline hose which I've been very happy with. The humidifier adds moisture so your mouth or nasal passages don't dry out and the Climateline hose is a heated hose that eliminates "rain out" where condensation can build up in your hose. I position my machine on a small step stool next to my bed below mattress level where it is virtually silent and use a hose lift system that helps me keep from getting tangled up in the hose while I sleep.

IV) Mask – This is probably the most critical piece of equipment in obtaining successful results from CPAP therapy. You wear it on your face to deliver PAP air to your system to keep your air passage open. There are all kinds of different masks available with the most popular classifications being nasal, nasal pillow, full face, hybrid, oral and total face.
Lessons Learned: For the most effective therapy, you need to find a mask that is comfortable and delivers air with a minimal amount of leaks. Masks are highly personal as far as fit as no two people have the exact same face structure characteristics. What may work great for one person may not work at all for you. If you obtain a mask from your DME, find out what their rules are on free mask exchanges or look into low cost mask trial programs such as the one provided by the CPAP Library (see ApneaBoard Supplier list for website link). I went through 4 different masks before settling on the ResMed Quattro FX as my mask of choice. I initially tried the Swift FX but mouth breathing and leaks were a problem for me with that mask. Next I tried the Mirage Liberty hybrid mask. I liked the concept, but I had a difficult time obtaining and maintaining a consistent seal with the nasal pillow portion of the mask. The Mirage Quattro gave me a good seal against leaks, but caused pressure sores on the bridge of my nose. The Quattro FX for me is the mask that provided the best combination of comfort and seal. I use mine with a Padacheek mask liner which provides even greater comfort by eliminating potential skin irritation from having the mask cushion come in direct contact with your face. I believe it should also prolong the life of the face cushion. Again, I must emphasize that mask fit is a totally personal thing that will vary from person to person. Try before buying whenever possible!

V. Software – Data reporting and compliance software is extremely useful in understanding progress and effectiveness of your CPAP therapy. I have a ResMed S9 Autoset machine which has full data reporting capability. Basic lower priced machines won’t have data capabilities but I believe all of the major manufacturers have models with full data capability. ResMed machines with data capabilities use ResScan software. I also use an open source software called Sleepyhead which is available for select machines and is currently in beta test status. I’ve found bugs with both software, but both systems provide invaluable information in understanding CPAP therapy effectiveness.
Lessons Learned: When purchasing your machine, be sure to insist on a machine with full data capability. Without the data software, you will have extremely limited information available to you as far as your AHI scores, leak rates and a number of other important factors. The software provides excellent graphs and reports that can help you spot trends and help you determine the best machine pressure settings, mask, EPR settings, ramp, etc.

VI. The Most Important Thing? – I spent a good three to four months playing with different machine settings and masks. If you’re one of the lucky ones, everything will be great and you’ll experience immediate benefits from CPAP therapy from the very first day. However, many others, myself included will experience incremental benefits from therapy over a longer period of time. My AHI scores have always been excellent from the start with average AHI consistently below 1.0. That has led me to focus on leak rates and obtaining 0.0 l/min leak rate scores. I figure with low AHI and no leaks, how can I do any better?
Lesson Learned: Don’t become overly obsessed with leak rate scores. With ResScan machines, unintended leak rates of 24.0 l/min or less can be compensated for by the machine and still provide maximum effectiveness. I’ve found some mask combinations where I’ve had 0.0 leak rates throughout most of the night, but for some reason, I don’t seem to be able to sleep through the night in those situations. With my mask of choice the ResMed Quattro FX, when I use a Padacheek liner, my maximum leak rates per night are usually between 2.4 and 6.0. Although the leak rates are slightly higher, they are still well below the 24.0 l/min goal for effective therapy and more importantly, I tend to sleep through the night without waking up, dream more frequently and wake up in the morning more refreshed. To me, that's the most important thing.

VII. Forum Participation – There are several very good forums available on the internet where sleep apnea sufferers can read about and learn just about anything you could possibly want to know about successfully treating sleep apnea.
Lesson Learned: Forum participants by and large are wonderful people who are willing to share their experiences and knowledge in order to assist their fellow sleep apnea sufferers in obtaining maximum benefits of CPAP therapy. In 6 months of therapy, I’ve learned so much from this and other forums and I continue to learn things every day. I do my best to share my positive and negative experiences to try and help other newbies benefit from CPAP therapy in the shortest amount of time possible. Hopefully, maybe something in this post has been of value to the reader. Participate!!!

[sailor4you]

Congradulations on attaining your 100th post. This post is written so everyone can understand the complexities of using sleep apena equipment. Wish I had read a post like this when getting my equipment. Luckly, I have the same machine as you, ResMed S9 with Humidifier and have not had any problems with it at all.

Masks on the other hand proved to be a challenge. I settled on a full face mask as well, the Fisher& Paykel brand. This mask has a lip that goes under the chin and seems to hold the mask in place better than others I have tried. I purchased an 8 feet long hose on eBay. This allows routing the hose from the machine, located on the night stand, up and over the beds headboard and down to the mask. I purchased a "C" clamp device, that had probably been a light at one time, that has a piece of flexible cable about 6 inches tall. Flea market or yard sale purchase. This clamp attaches to the headboard and keeps the hose in place.

Everyone that has sleep apena should use their machine. Keep trying differant things until a combination works for you. This is a personal thing and one size does NOT fit all. Here are some of the rewards I have gained from using this equipment.

1. Get a good 6 to 7 hours sleep a night. Was waking several times a night and using the bathroom. At rest, the body shuts down the "Having to use restroom" reflex.

2. I wake rested in the mornings, ready to start the day after two cups of coffee.

3. Losing weight gradually. When starting on this machine I weighed close to 390 pounds. Been using the machine for 6 months. My cheeks, neck and waist have reduced in size. Not sure on current weight, but sure feel good! Not bad considering in June I'll be 66 years old.

4. Had been so tired while driving I would fall asleep at work and while driving. My wife finally would not ride with me for more than a short distance. This has corrected itself with getting a great nights sleep. I corrected my problem, please correct yours before I meet you on the road!

5. The last benifit will have to wait awhile longer before I know for sure. From the way I feel, I have a long life still ahead.

USE THAT MACHINE! If you have questions or need help with advice, just ask. That is what this board is about.

Have a GREAT day!!!

[greatunclebill]

Was waking several times a night and using the bathroom. At rest, the body shuts down the "Having to use restroom" reflex.

that may very well be true, but the main reason is that when you are not treated and have apnea episodes your o2 goes down. when the o2 goes down, the heart pumps harder to try to get the o2 level up. when the heart beats harder the other organs start also working more with the kidneys producing urine and the corresponding urge to go that is timed with coming out of the deep sleep. chances are good, if you don't have apneas you won't have the events leading up to urine production and won't have the urge even as you drift between light and deep sleep.

not sayin', just sayin'.

[zulu]

Hi all,
Like most people I guess,when I first started using my first machine,(fisher&payke 200) I was terribly frustrated with my need to use it but "HOW" how to get through the night without tearing it off my face,how to remain on my back,what to do when i had a head cold and dozens of other problems,O.K.I like most of you I devised ways around most of these problems,but this did not help all that much,neither did my attempts at marital obligations,with my wife giggling and likenening sleeping with me was like sleeping with DARTH VADOR,I felt like the elephant man forever doomed to sleeping on my back,AHA,I had finally saved enough money for a resmed s9 autoset with nasal pillows,WOW what a difference no back pressure when breathing out, sleeping on my side,no claustrophobia,with the added convenience of adjusting this thing myself.I know these resmeds are pretty pricey,but believe me these cpaps are great.Oh and no need to go back to the clinic because the sd card gives me all the feed back I need.6 years of agony and 2 years of bliss.My doctor told me the fail rate for cpap use is very high,and i don't doubt it.ps.I'm now using software.

[greatunclebill]

Hi all,
Like most people I guess,when I first started using my first machine,(fisher&payke 200) I was terribly frustrated with my need to use it but "HOW" how to get through the night without tearing it off my face,how to remain on my back,what to do when i had a head cold and dozens of other problems,O.K.I like most of you I devised ways around most of these problems,but this did not help all that much,neither did my attempts at marital obligations,with my wife giggling and likenening sleeping with me was like sleeping with DARTH VADOR,I felt like the elephant man forever doomed to sleeping on my back,AHA,I had finally saved enough money for a resmed s9 autoset with nasal pillows,WOW what a difference no back pressure when breathing out, sleeping on my side,no claustrophobia,with the added convenience of adjusting this thing myself.I know these resmeds are pretty pricey,but believe me these cpaps are great.Oh and no need to go back to the clinic because the sd card gives me all the feed back I need.6 years of agony and 2 years of bliss.My doctor told me the fail rate for cpap use is very high,and i don't doubt it.ps.I'm now using software.

welcome to the forum and glad to have you here. feel free to jump in any thread or make new threads and express your thoughts and views.

[DenD746]

Thought I would post an update. Been on the S9 Autoset for 37 days using the ResMed Swift FX nasal pillows mask and a chinstrap. Settings are 5.6 min; 12.8 max; EPR 1. Just turned in my data to the DME this week and was compliant for Medicare. 32 days > 4 hours a day; 5 days < 4 hours a day. Avg daily use is 6.27 hours. AHI is 1.0. AI is .9; HI is .1. CA is .4; OA is .2. Pressure median is 8.2; 95% is 11.5; max is 12.4. Still can't seem to sleep through an entire night. I think this is because of nasal stuffiness due to allergies and a deviated septum. But except for a few nights when it was really bad, I have been able to clear it up enough so that I can put the mask back on and go back to sleep. I have noticed that even though I wake up once or twice a night, I usually no longer have to use the bathroom when I wake up. Can't say yet that I noticed a big difference in how I feel - some improvement, bit more energy maybe, on some days. I recently checked my BP a few times and it seems to have dropped a good deal (20 to 30 points on the upper number) so that is hopeful. I am getting a new sleep doctor (the current one wasn't happy with my approach to this and only agreed to see me one more time since I wouldn't have a second sleep study) who I see in about 10 days. Anyway, things are going well so far. I do note that I have more CA's than OA's on a consistent basis though both numbers are pretty low. I am not sure but I think there may be some connection between leaks then an increase in pressure followed by a CA. Does that make sense? I am studying the data in ResScan but am not sure what I am seeing so will continue to study it. Certainly glad I found this Board and was able to study up on all this stuff before I saw the sleep doctor and got the prescription (which I dictated to the Doctor). Thanks Everyone and Good Luck to you all.

[sailor4you]

Good luck with your continued use of the S9. It is a great machine, and will serve you well. As you have noticed, your vitals have been brought into better territory.

Been using mine every night for the last seven months. My wife says that I have lost weight in my face and neck although I haven't noticed it. My waist has shrunk an inch so hopefully this will continue. When one starts off weighing 390 pounds, any small improvement is welcome. The thing that I have found is that doctors scales don't register high enough for me. My eye doctor has a set of electronic scales that does ok, but why doesn't my medical doctor? My eye balls don't weight that much!(<;

Keep using your machine. Try differant masks if you aren't satisfied with current results, but keep using the S9. It will greatly improve your life! I am WELL satisfied with mine!!

Bill Corder
GySgt (Retired)
United States Marine Corps
[email address removed for your protection - you could get spammed - Admin]

[Alan]

I am 67 years old and was diagnosed with severe obstructive sleep apnea, having an average of 38 apnea events an hour. I have been using a CPAP machine for almost six months, and my apnea events are down to an average of about 4 per hour. Before using the CPAP machine, I was having intermittent atrial fibrillation (A-Fib) several times a week. Now I rarely have A-Fib. I feel so much better, not tired all the time, and have a lot more energy. Here is my story.

I went for a sleep study after my cardiologist recommended it. For many years I had intermittent A-Fib about once a month. The A-Fib usually lasted only one to three hours. Then, last November I started having A-Fib several times a week, lasting up to 6 hours a time. I was very tired throughout the day and wanted to sleep a lot. So I went to my cardiologist, who, among other tests, recommended that I go for an overnight sleep study to see if I had sleep apnea. I also snore a lot, so my wife slept in a separate bedroom, because my snoring kept waking her up at night.

Sure enough, the sleep study confirmed that I had severe sleep apnea, with an average of 38 events per hour. The sleep study itself was not much fun. It was hard to sleep while being "wired up" with some 38 probes monitoring all aspects of my sleep. The next morning I found out what a continuous positive air pressure (CPAP) machine was. I went for a second overnight sleep study to be fitted for a CPAP machine and mask. It took me about one month, trying three different masks, until I got a good one that fit well and didn't give me any sores. The first mask that I tried at home was a nose mask. I only used it two nights, since it gave me a bad sore on the bridge of my nose. Then I tried a nasal pillow for several weeks. I no longer had a sore nose, but I did not find the nasal pillow very comfortable. I was determined to make the CPAP work, so I tried another nasal mask with much softer rubber-like material. This worked very well, and I did not get any sores. I use the CPAP machine every night, even when I travel.

Here is one interesting observation I found when I used the CPAP machine at higher elevations. I live on the East coast, which is at sea level. When I went skiing for a week in Colorado, my sleep apnea went up to an average of 19 events per hour, whereas at home it was 4 events per hour. When I got home, my apnea events returned to 4 per hour. After talking to my sleep doctor and the CPAP manufacturer, I found out that at elevations above 7,500 feet, my CPAP machine is not as effective as below 7,500 feet.

I am so thankful to my cardiologist for diagnosing the likely cause of my A-Fib and sending me for a sleep study. Here are the significant benefits that I found from treating my sleep apnea:

1. My apnea events went down from an average of 38 events per hour to 4 events per hour.

2. The frequency of intermittent A-fib was drastically reduced from several times a week to the point that I rarely have A-fib.
3. I have so much more energy; I am not tired during the day; I do not take naps during the day, which I did before I started using the CPAP machine.

4. I do not snore any more, and my wife and I now sleep in the same bedroom.

5. I only wake up once a night to go to the bathroom, whereas before I started using the CPAP machine, I was going to the bathroom 3 or 4 times a night.

6. My blood pressure is down to normal.

These benefits greatly outweigh the minor inconvenience of using a CPAP machine. I will continue to use my CPAP machine every night.