Feeling Depressed and like a failure

Kahfree,

First of all I hope you are out and about and too busy to read this. But in case you're back here (and I spent a lot of time here when I started) I'd like to add my encouragement and a few comments.

I think you want to preserve as many of your sleep routines as possible at least at first. Learning to work the cpap into them does take some time. For me I had to learn how to read myself to sleep with the mask on and without my glasses. There is no way I could have given up reading myself to sleep. I see you've already ordered a nasal pillows mask. That's good since it will let you keep to your TV watching ritual. Until you get them I bet you find just listening will work pretty well (I had lousy over the air reception for years - often listening was all I could do).

Can you ask your daughter to wake you up if she notices that you don't have the mask on?

I like the noisy pie pan suggestion.

AHI = Apnea/hypopnea index. It's the total number of all apneas (total pauses in breathing) and hypopneas (reduced airflow events - where some air is getting thru but not enough) for the night divided by the number of hours you used the machine. Those numbers are high but I'm not sure whether or not they are significant since you've been having trouble sleeping and keeping the mask on. I'm sure someone else who's familiar with how your machine tracks those numbers will chime in soon.

Leak is the amount of extra air escaping. Some is normal. How much varies for each mask. Again - someone else will need to give you details.

Checksum is just a number calculated from all the other numbers. It has no meaning in itself. If you read off the other numbers to the DME over the phone they will plug those numbers into a program that calculates a checksum. If it's the same checksum as yours they then know that you aren't lying to them about the other numbers.

The good news is that your average hours of use is high enough to call you compliant for billing purposes. You do need to shoot for wearing it 100 percent of the time for your own sake but I'd say you're doing pretty well for five days in.

Midnightowl

Just wanted to add that the goal is to have your AHI to be under 5. Some people want it even lower than that, but it should be noted that different CPAP machines may count them differently.

Kahfree, your being too hard on yourself.

You haven't failed, you have just found 5 ways that don't work so good.

You might say that you are uncoordinated or inflexible, but you are not a failure.

After all, what could be more "natural" than strapping a mask to your face and having a machine blow air up your nose. I mean "most" people find this as natural as walking...

Let's take a look at walking. Mom and dad encourage us on to take that first step, and when we do we eventually end up falling on our backsides. Fortunately, this happens before we understand the meaning of failure, so we just keep at it, take the falling down in stride, and end up walking.

May I suggest that you try to be more "childlike" in your expectations...

OK, if you have read this far, you may have a compounding issue of insomnia. I figure that by now you should have drifted off to sleep. When you wake up, take a strap and tie a figurative pillow on to your backside. This is to remind you that you are just "learning to walk."

Sweet dreams...

First of all I hope you are out and about and too busy to read this. But in case you're back here (and I spent a lot of time here when I started) I'd like to add my encouragement and a few comments.[/quote}

I did go out to a friends house who had a party and had dinner there. It was so nice to have fun and all. I just got home and it was a great evening.

Can you ask your daughter to wake you up if she notices that you don't have the mask on?

I just did and she said she would. I just hate to have her do it all the time because I am sure her husband would love to have her in bed with him at night. lol

I like the noisy pie pan suggestion.

haha me too

AHI = Apnea/hypopnea index. It's the total number of all apneas (total pauses in breathing) and hypopneas (reduced airflow events - where some air is getting thru but not enough) for the night divided by the number of hours you used the machine. Those numbers are high but I'm not sure whether or not they are significant since you've been having trouble sleeping and keeping the mask on. I'm sure someone else who's familiar with how your machine tracks those numbers will chime in soon.

Leak is the amount of extra air escaping. Some is normal. How much varies for each mask. Again - someone else will need to give you details.

Checksum is just a number calculated from all the other numbers. It has no meaning in itself. If you read off the other numbers to the DME over the phone they will plug those numbers into a program that calculates a checksum. If it's the same checksum as yours they then know that you aren't lying to them about the other numbers.

The good news is that your average hours of use is high enough to call you compliant for billing purposes. You do need to shoot for wearing it 100 percent of the time for your own sake but I'd say you're doing pretty well for five days in.

Thanks for helping me understand some of the numbers. Really, I have enough hours for billing? I would have thought they wanted like 8 hours of sleep per night to say I was compliant. Tonight, I hope to get 4-5 hours.

Thank you very much!
Kelly

avi123 wrote:time is up, my wife tells me to stop my post b/c I am gullible.

I am confused. Stop because your gullible? explain?

OK, if you have read this far, you may have a compounding issue of insomnia. I figure that by now you should have drifted off to sleep. When you wake up, take a strap and tie a figurative pillow on to your backside. This is to remind you that you are just "learning to walk."

Sweet dreams...

I just got home, and its 11:30 pm. Insomnia may be a little bit in my life right now. Actually, when I did the sleep study, I could not sleep and for the entire night in the hospital, I slept 117 minutes. Thank goodness though, it was all they needed to see that I have Sleep Apnea. I may tie a scarf to my butt to remember I am learning. Thank you!

Kelly

Ask the DME what you need to be compliant. I was told 4 hours a night.

Cuda wrote:Ask the DME what you need to be compliant. I was told 4 hours a night.

That's what I've read. At least four hours a night, five nights a week is my understanding of what it usually takes to be considered "compliant."

So your AHI is higher than the goal of 5 or lower. You might be wondering how that is possible since xPAP's are supposed to prevent apneas and hypopneas.

You may need to raise your CPAP pressure, but the first thing that needs to be done is get your leaks under control. You are not getting effective therapy with leaks as high as yours.

Edit: Ignore what is written below, as I temporarily forgot that you have a CPAP not an APAP.

APAP's try to give you the lowest pressure necessary to prevent apneas and hypopneas, but generally they don't raise the pressure until after an event (apnea/hypopnea) has been detected, which is after one has happened, to hopefully prevent the next one. But, if you don't have another event for a little while, it lowers the pressure again, to not give you more pressure than you need. With the lower pressure, you are more likely to have an event again, repeating the cycle. Does that make sense?

So, what APAP users do on this forum is raise the minimum pressure, so that the pressure stays at that higher pressure to prevent more apneas. Often people will set their minimum pressure to the 90th percentile pressure. That will typically do the trick of lowering their AHI below 5.

So, most events are now being prevented by that higher minimum pressure, and the pressure is just high enough to do that. However, on some nights you are more likely to have an event than other nights - you might be congested due to a cold or allergies, or you may have had some alcohol. A CPAP set at the same pressure as your minimum pressure on your APAP could not adjust to those times when you need a little more pressure to prevent those events. But, APAPs can.

Let me know if my explanation does not make sense.

Kahfree wrote: AHI for the last 30, 7 and last night. 31.6 and for the last night 35.2
Leak for last 30, 7, and last night. 94. Last night 131.

I do not understand AHI yet nor the leak. Any comments on what this all means? Than you

Kelly

Right now we should only be talking about what you wrote above!

I am not sure what you are reporting. It looks like you might be saying the AHI has been 31.6 and 35.2 for the last two nights. Is that correct? If so it means you were having an average of 31.6 apneas and hypopneas per hour last night and 35.2 the night before. This would make you one sick puppy. So the good news (assuming I interpreted your note correctly) is you can start to heal quickly once the therapy is working properly. Please clarify these numbers.

On the leak, am I to understand it was 7 for 30 days and 94 and 131 for the last two nights? Those last two are very high leak levels which could be making your therapy ineffective.

Hueffenhardt, thank you very much! Do you know if the leak rate that machine reports is the total leak (design + unintentional) or just unintentional?

BTW, I have an axe to grind with members who post in here things like "it just takes time to adapt", "hang in there and it will get better", etc. without knowing whether the newbie's therapy is effective. If the therapy is not effective they will never adapt to it!

Hueffenhardt wrote:So, what APAP users do on this forum is raise the minimum pressure,

The machine Kahfree has listed in her profile is a straight CPAP. ????

roster wrote:

Hueffenhardt wrote:So, what APAP users do on this forum is raise the minimum pressure,

The machine Kahfree has listed in her profile is a straight CPAP. ????

My bad, you are right. I knew that, but forgot it when I started thinking about what she could do about it. After she gets the leaks under control, she can change her pressure setting if needed by entering the setup menu as described above.

Let me do a little research into whether the leak reported subtracts out the acceptable leak for her mask or not. I don't think it does. Either way, her leak numbers are very high.

I had a fairly easy transition as I did a lot of scuba diving in the late 80s. I do remember how difficult it was for me diving at the beginning as I not only had to deal with getting used to having a dive mask strapped to my face and a regulator in my mouth but having a closed in feeling from the water pressure. I eventually got used to it and went on to do some fairly deep (120-140ft range) recreational diving.

When I first started CPAP, even with my scuba background I did pull my mask off and shut the machine off without knowing it a few times but have since become used to it. You will too with time. You are going through what most of us have experienced.

I first strated with the type of mask that has points that go into the nose and found that extremely painful and was worried it would never work. I switched over to a Mirage Active mask that has a soft gentle pillow that fits over the entire nose and is super comfortable. World of difference. In a round about way I guess i'm saying, don't corner yourself with your setup. Experiment until you find something that fits you most comfortably and you will be less likely to pull it off at night.

realistically, I think you should try to wear the mask for 4 hrs and not stress over being unable to wear it all night at first. I started on this in Nov and I NEVER thought I would get used to it. It is truly weird at first. But now, after 2.5 months, I often wear it for 7hrs and I do not mind wearing it at all. I now like my mask!! You might consider a mask liner to make it all more comfortable (padacheek.com or search the forum for home-made mask liners).

A little encouragement here and a suggestion. I am only 2 months into this myself, but for me it was finding the right mask. Do you wear a full-face mask because you mouth-breathe? I thought I was a mouth breather, but it turns out I was just starved for oxygen and once I was on CPAP I slept with my mouth closed. This is common. I read somewhere that people who keep their mouths closed during the day generally will at night while on CPAP treatment. If you have a tendency to breathe through your mouth during the day, that will continue at night. If you have sinus trouble that may cause you to mouth breathe, but I have constant stuffiness and still don't mouth breathe while on CPAP. Some people tape their mouth closed or use a chinstrap to keep their mouth closed while using their CPAP (not if you are too stuffy to breathe through your nose, of course) If you're not a mouth breather, I would experiment with something that takes up less face real estate, like a nasal mask or nasal pillows. For me, the Swift LT was the key. A lot of others like the Swift FX because it is so minimal on the face. I just recently switched to the Swift LT and now I am sleeping for hours at a time and going to sleep shortly after going to bed. Nasal pillows would also allow you to wear your mask comfortably while watching TV. If you need a full face mask because of mouth breathing, maybe you could try the Liberty Mirage or Innomed Hybrid, both of those have nasal pillows and also cover the mouth, but leave your view wide open (for TV watching or reading). Hang in there, it takes time getting used to. For me, eight long weeks! Have your medical equipment provider try many masks on you and find one that you feel comfortable with. Sleep Nation has a program for you to try various masks for a minimal fee. I think you get to keep them for a week.

http://www.sleepnation.tv/trialprogram

Janknitz on the forum here has a wonderful article on Taming the Mirage Quattro. She says it can float on the face and become quite comfortable. Here is her guide:

http://maskarrayed.wordpress.com/taming ... e-quattro/

Hang in there, it does get better.