Newbie ups and downs, and thank you!

Hello and thanks for all the great info so far. This is an awesome, incredible site! About two years ago I asked my Dr about sleep apnea, since my ex and current wife had both talked about how scary it was to listen to me snore then stop breathing. No real response from him, he just wanted me to have my wife write down what she heard. At my last physical a couple months ago he finally agreed to a sleep study. I went in, very apprehensive, but the Resp Tech was awesome, had been doing these for 11 years, so things went pretty well. He explained that if he saw severe apnea he would put me on the CPAP halfway through the night, otherwise he would run the whole night and bring me back for a second study to satisfy the gods of insurance. I went to sleep and in about two hours he came in and said he had more than enough data, I was having apnea in every position I slept in, five events in one two minute period. He tried me out on the nasal pillow, which wasn't as bad as I thought, but I just could not sleep, so he went to a nasal mask, a Comfort Gel. It was very odd feeling, but I did manage to sleep (after a bad episode of burbling by the humidifier which was set too high!). I finally got to sleep about 3:330 am. It seemed like about a minute went by and the RT's relief was opening the door asking me if I needed to be anywhere that morning, because it was almost 8:00 am! I had just had the four best hours of sleep of the last fifteen years, and felt unbelievable. He showed me some of my test (haven't yet seen the whole thing) and said that after getting me adjusted just right they turned off the monitor because I was sleeping so well. The first words out of my mouth were, “How do I get one of those things?” as I pointed at the CPAP.

It took two weeks for the paperwork to get processed and I finally got my machine. My first night I slept about five hours, which from what I’ve read here is pretty good. Also, even though this was two-three hours less sleep than I used to get I had more energy than I remembered for a long time.

My biggest problems at first were as follows:

1 Serious rainout, to the point that the hose was “burbling”, making enough noise to wake me as well as shaking the hose. I had the same trouble during the sleep study and the RT said that someone left the humidifier on it highest setting. Mine was not, but I turned it down and hung my hose on a hook over my bed which seemed to solve that problem. Since then, I have had to do some serious negotiation with my wife to raise the bedroom temperature (she’s a Wisconsin girl and is used to sleeping in a cold room). After a couple of weeks of adjusting the humidifier, some blood in the nose when I got up, the liberal use of saline nasal sprays, and cutting up an old towel and rubberbanding it around my hose, I wake up a little dry and have just a little condensation in my mask. I see an Aussie hose in my future!

2 The first couple of nights I had a very hard time getting used to the initial cold blast of air when I started on the machine. This was caused by the room temperature distilled water in my humidifier. I think I discovered the “warm-up” feature that the DME forgot to tell me about on the third night. But it was hard to remember to turn it on an hour before bed, so I went to nuking a pre-measured amount of water just enough to warm it up and turn the arctic blast into a very agreeable Chinook. Now I no longer need the ramp feature, and often wake up thinking the machine has quit working because it seems to me that I am just breathing normally. Then I open my mouth and know instantly it is still on.

3 Mask fitting is a definite problem for me. Anything that works and stays sealed all night causes mild to severe irritation across the bridge of my nose. The better the seal, the worse the irritation. I put Hydrocortisone cream on it every day which seems to help. I started with the Ultra Mirage II, then tried the Comfort Gel, and now have switched back to the Mirage since the CG caused the same problem. I tried a Swift II nasal pillow last night and could not get a good seal to save my life. I lasted about an hour before getting up and switching back to the Mirage. I’m pretty sure this amped my numbers up for the night too. I cut up an old cotton t-shirt to make some little pads for the bridge of my nose with the Mirage, but had more leak trouble. I am pretty much resigned to having a permanent mark on my face at this point, but consider it well worth it.

4 After about a week I learned from this site how to get my data from my machine every night. Very helpful in tracking what works and what doesn’t. Even more important, in my eyes, is the little boost I get whenever I see an improvement in my numbers. I know that the best measure of how one sleeps is how one feels, but there is a feeling known only to cpappers (?) that comes from seeing your first AHI under 5.0. I felt like I had run my first marathon when this happened for me. I’ve been tracking my numbers for a couple of weeks, and can see a trend upwards in hours slept and a slow decline in the AI, HI and AHI.

My sleep DR has been very pleasant to work with. I asked him about trying a higher pressure and he reset the machine for me. I also explained that I had learned how to do it myself online, and he was fine with me trying out different pressures too. The DME supplier has been very easy to work with, probably because the RT is a nice lady. The Dr gave me an RX for an extra mask, the Swift, so I could try the nasal pillows. She said it was easier for her to give me one for free than to try to get the extra mask approved by the powers that be. It seems they operate under the same guidelines as Medicare, so by their rules I can only have one mask, even though my insurance will pay for more. So again, I feel very lucky in this respect. My wife has gone from being terrified that she has heard my last choking gasping breath as she lays beside me, to being worried about me because I am so quiet and sleeping on my back, which she never saw me do before. She has been very supportive, not saying anything about the masks hanging from cabinet doors or hangers while they dry. Family and friends have had mixed reactions as I explain what is going on with me. Most are polite but change the subject after a couple of sentences, since they really don’t understand that this is a “real” medical problem. My older sister did some reading on it, and then demanded that I keep using the CPAP every night so I wouldn’t have a heart attack and die. I assured her that was my plan.

Even with less than a month under my belt, the improvement in my life has been enormous. For the first time in my life, I actually look forward to going to bed. I used to call myself a night owl who just liked staying up. I realize now I just didn’t want to have to fight to stay asleep. Now I tape everything and get into bed earlier than when I was in grade school. I still set an alarm, but have not needed one as I wake up almost every day before it goes off. I get in time to hit the treadmill for a half an hour everyday, clean my gear and make my lunch and get to work early. I only smoked a little, but gave that up so it wouldn’t interfere with my sleeping and my breathing. No significant weight loss yet, but I no longer feel so worn out when I get up I can’t make lunch on workdays and opt for fast food lunch instead, the fattier the better to make me feel a little better as I drag through the day. So I am hopeful that less McDonalds in my diet will mean less of me.

To my fellow newbies, or anyone else that needs to hear this, please, please stay with this treatment. It really does work and you really will feel better. This is not mumbo jumbo, but scientific medical treatment. Like my Dr first said to me though, its not a silver bullet, you have to use it for it to work. I don’t want to toot my own bugle, but I feel that if the treatment has worked well for me it is because I have been 100% compliant since day one. I use the mask at night, when I nap, any time I sleep. I would rather have four hours on the mask with a bunged up nose than eight hours without it and feeling like I used to. Read the articles about the Seven stages of CPAP, and What is Feeling Good? Until I started this treatment I did not realize I was one of the “Walking Dead”. When I found this site and starting reading it was eerie how much all of this sounded like me. My heartfelt and lifelong thanks to all of you for this site and your input. You are helping to make a real, positive difference in people’s lives.

You have a good start and congratulations!!

Have your read about Padacheeks? She has a website and sells these neat little things to pad your straps. She also makes a nose protector for those that develop irritation on their nose. She has a sticky near the top of the forum and pm her and ask about them.

Congratulations on doing so well and most especially for your very positive attitude! I have no doubt that you'll overcome any and all obstacles. I have a few possible suggestions and have noted them below:

alnhwrd wrote:My biggest problems at first were as follows:

1 Serious rainout.....I see an Aussie hose in my future!

2 The first couple of nights I had a very hard time getting used to the initial cold blast of air when I started on the machine.

Both #1 and #2 would be helped by Aussie hose. I like my room temp at 60 deg F for sleep but CPAP air was too cold. Aussie hose made it feel just right. Worth every penny!

Mask fitting is a definite problem for me. Anything that works and stays sealed all night causes mild to severe irritation across the bridge of my nose. The better the seal, the worse the irritation.

Besides padacheek, what helped me most with my very deep red spots on bridge of nose was to put some silicone putty (Mack's earplugs) in the top corner of the hard plastic frame. That doesn't result in leaks. Also, I put my Quattro padacheek in between the hard plastic and soft cushion/clip and then it didn't result in any leaks either.

My sleep DR has been very pleasant to work with. I asked him about trying a higher pressure and he reset the machine for me. I also explained that I had learned how to do it myself online, and he was fine with me trying out different pressures too. The DME supplier has been very easy to work with, probably because the RT is a nice lady.

It's nice to hear someone else has had a good experience with both! After all the rotten things I've heard about DME's, I must say mine is good. When they get used machines back, if they are in good shape they clean them up and test them and then put them on a special shelf. If someone comes in who doesn't have insurance and can't afford to pay, they given them one of these machines *plus* they give them 2 free masks per year. I love it ... if all businesses did something like that what a better world this would be!

To my fellow newbies, or anyone else that needs to hear this, please, please stay with this treatment. It really does work and you really will feel better. This is not mumbo jumbo, but scientific medical treatment. Like my Dr first said to me though, its not a silver bullet, you have to use it for it to work. I don’t want to toot my own bugle, but I feel that if the treatment has worked well for me it is because I have been 100% compliant since day one. I use the mask at night, when I nap, any time I sleep. I would rather have four hours on the mask with a bunged up nose than eight hours without it and feeling like I used to. Read the articles about the Seven stages of CPAP, and What is Feeling Good? Until I started this treatment I did not realize I was one of the “Walking Dead”.

Well said!

Mindy

Mindy your DME sounds like a keeper!! Wish they all would be like that.

Welcome to the board, alnhwrd. What a great introductory post.

You see an Aussie heated hose in your future (good idea )

What I see is someone who is going to be helping a lot of people if he keeps posting. Please do! Keep posting!!

Your encouraging words and success story may be what helps someone else put that mask back on and hang in there....this very night!

I was going to say the same thing as RG -- Soon, you will be providing help and advice for others. I hope many newbies will read this post -- very well said!!!!
You have a great attitude!!!! You can't help but succeed!!!!

I had to laugh at the end of #2.....I still open my mouth once in a while just to make sure the thing is really still blowing!!!!

If you haven't found it (and from the sounds of it you have -- but I'll tell you anyway ), click on the yellow lightbulb at the top of all the pages -- Our Collective Wisdom is full of great information -- and you can also find different ways to work with your mask to make it work better!!!

Having the warm humidified air was something for me to get used to....I'm a native Left Coaster, but I've always liked my night time to be cold and I really liked breathing the cold air.....So now that's changed. Oh well....

Take care!!!
cheers
goose