Kenny's CPAP Thread

[DoriC]

Kenny, I'm going out on a limb and give my observations. I'm certainly not an authority on any of this but my husband is not too far past where you are now and since I'm mainly in charge of his therapy , I'm just speaking from our experiences. The AHI may be reporting lower than it really is because as I understand it, once the leaks get over a certain point the machine cannot compensate for them and events if they occur go unreported. I think I remember you changing from auto to cpap pretty soon after you started, but now that you've gotten somewhat adjusted to the machine and you probably need a higher pressure, how about setting it to auto at 12-16 for a few days and see where it goes, that's not a very wide range and may give you some good info. As for the FF, we were both very anxious about it at first but never considered anything else because the study showed he was a jaw dropper/mouth breather and had to be changed to a FF as soon as he fell asleep during the titration. He did go back and forth with the Quattro & UltraMirage but seemed to do better with the UM but we haven't given up on the Quattro yet, maybe later when we're more settled. Dr also prescribed some low-dose Ativan(lorazapam) for anxiety for the first 30 days but he only took it for the first 5 days and then didn't need it but it did help. You seem like a great guy and I hope this helps a little and doesn't confuse you. If I'm wrong about anything I've said I'm sure the pros will "gently" correct me.

Dori

[tattooyu]

DoriC,

I would certainly be willing to give it a try. I changed from APAP back to CPAP because my leak rate started to climb (I think). It's certainly worth considering in case I do need that upper range. I'm just thinking I'll get even MORE leaks.

[Uncle_Bob]

Man, both of those can have some nasty side effects. Have you had any? I remember taking a Xanax when I was rushed to the ER thinking I was having a heart attack (it was a panic attack). It did make me feel better...

Not sure how often they are supposed to be replaced. Once a month maybe? I'll e-mail me DME rep. and let you know what's covered for my insurance.

No nasty side effects yet other than too much xanax can make you feel zoned out,once i take the dose i need i am a better person, the dose i need means i have no chance of addition thankfully.

My DME has just called recommending chin straps .... ho hum on the journey goes

[tattooyu]

Last night was interesting. I ended up having a mask leak, which I never, ever had before. I'm wondering if it's because I set it for 12-16 on auto, and it happened during a higher pressure. The machine reported 95% at 12.0.

AHI: 14
AI: 3
HI: 11

Urgh. I did tape again, but my wife thinks I still opened my mouth? The tape was on when I woke up. I felt pretty good upon waking, but now I feel like crap. I'm just going to keep on doing what I'm doing, hopefully with my new chinstrap tonight. Otherwise, a Quattro is very much in the near future for me.

[Uncle_Bob]

I actually had a couple of awake moments with leaks last night. My AHI was also 14 this morning and i only used it for just short of 6 hours. Not sure of the break down AI, HI wise.
Funny thing is I feel fabulous. I jumped on my bicycle and rode the 12 miles into work I'm feeling pretty confident and alert. I like this lots

Lets hope it lasts all day

[wasColette]

I'm going to give the chinstrap me DME is sending a shot, but I have a feeling I'll end up with the Quattro. I don't really mind, I just hope it works. Do you have any problems with it leaking when you sleep on your side? Do you sleep on your side?

Actually, I have less leaking when I'm on my side(s). I get the most leaking while sleeping on my back. Strange, but true.

P.S. I chose the Wonder Woman avatar just because I don't know how to post a real picture of me. I wish I could find more hosehead avatars. While I look quite different than Wonder Woman, I do feel like Wonder Woman most days!

[tattooyu]

You know, I don't feel like crap so much now a few hours later (after breakfast). Maybe I was just hypoglycemic? I don't feel as good as I did when my leak rates were lower, but I actually don't feel so bad.

Here's how I have to look at it for now:

• I just started therapy so I have to be patient.
• Is my therapy where it should be? No, but my events have decreased at least 60% (if not 70%) since starting therapy.
• It will only get better with my persistence.

I tend to be pessimistic, and for those of you who have gotten to know me a little, I'm very worrisome. I'm trying to change that and keep positive through the adjustment period.

[DoriC]

Kenny, you have to give each new setting a few days before you change anything and especially since you're going to try a new chinstrap tonight. That was the first thing I was told, "only one change at a time", but of course I didn't listen and boy, did I get confused. I couldn't even remember the previous changes I made. It's good that your wife is observing you asleep and can comment on your mouth breathing.

[tattooyu]

I know, but it's hard not to change something when you feel like crap all day. I'm going to keep my current settings for a while, trust me.

[birdshell]

Kenny,

You may have had mouth leaks with the tape...it is possible to do so. I usually tape and then try to blow air out of my mouth as a test. If any gets through, I just add a bit of tape.

Relax, Kenny, you are still doing WAY better than you were before. Really...just ask your guinea pig!

Karen,
Who believes and trusts cavy observations

[tattooyu]

Cavy (guinea pig) observations are of the utmost legitimacy!

I got my new chinstrap yesterday in the mail. No offense to RipVW who makes a fine product, but this one just works MUCH better for my face shape. I believe it is called the Navillus. It really holds my mouth in place! I decided to try sleeping without taping.

Okay folks... here's how it all went down last night (3/12/2009):

Went to sleep at 10 pm.

Had 5 1/2 hours of sound sleep!

Woke up at 3:30 am to massive rainout even though I use a hose cover and my humidifier was on 1.5.

By coincidence, I reached out and touched the end of the mask hose, where it connects to the main hose, and noticed that it was wet! Right where the mask hose and the plastic end meet is a leak.

Leakage: 0.35 L/s

Luckily, I had some pieces of 3M Micropore tape from last night and promptly taped up the hose.

Leakage: 0.24 L/s

I went back to sleep.

From that point on, I couldn't sleep much and was tossing and turning. Probably only light to medium sleep for an hour. The next time I woke up, I thought, "I forgot to tape over my nose ring hole!" I took another piece of tape and covered that up.

Leakage: 0.22 L/s

Mouth leaks: none that I was aware of and none that my wife heard!

If I understand correctly, the leak number is referenced the same way as the pressure: 95% of mask-on time is spent at that leak rate or less. I estimate that once I get a new mask hose or some teflon tape(?) to really seal the mechanical leak, my leak rate will come down even more.

You all can imagine how excited I am that this is starting to work. I feel better today than yesterday for sure but still a bit tired.


Results for 3/12/2009:
Usage: 8:12 hrs (1-2 hours awake in the middle)
Leakage: 0.22 L/s (13.2 L/min)
Pressure (95th centile): 12.4
AHI: 9.5 (Adjusted = 5.6)
AI: 1.7
HI: 7.8 (ResMed/2 = 3.9)


(For kicks, I still want to show the "adjusted" numbers for a ResMed.)

Things are looking up!

While I am still having quite a few interruptions per night, I have a good feeling they will improve. I'm going to leave my machine, mask and chinstrap exactly how they are for at least another few days if not a full week. At that point, if the numbers are still the same, I will start increasing my minimum pressure 1 cm/week to improve my AHI.

[Rockin Mama]

Kenny, i;ve been keeping up with your thread, and I am glad things are looking up for you!

[tattooyu]

RM, thanks for stopping by my thread! I know it's REALLY long, but I'm used to boards where you keep your stuff in one thread.

Congrats to you on standing up for yourself and getting the machine you wanted. Your numbers will improve with time, as will mine, and you will start feeling much better.

[Uncle_Bob]

Kenny good to see you are getting better. I'm still waiting on my chin strap, i left a voice mail with my DME asking if they could mail it as its a 1 hour 30 min round trip during the day to visit them.

so for me 3/12/09 went like this

use 6.27 hours
AHI 9.4
AI 0.7
HI 8.7

Kenny why and how do you adjust your numbers for resmed ?

[tattooyu]

UB,

I wish I had your AI numbers! I'll get there.

Some users on here say that ResMed machines are very sensitive to HI events and report about double of other machines. That's why I show those other numbers. I don't know if that's accurate or not, but I've seen it mentioned a few times on here.

What was your leak rate last night?