Updated with titration report, any help analyzing?

As everyone here knows, this board is a great resource for all PAPers, especially we newbies. Even for folks like me who mainly just read everyday, the accumulated knowledge here encourages us to be own own advocates in what can be a fustrating environment. Case in point - me!

I've been on BiPAP 11 / 7 since August. According to the average AHI reads on my machine and just how I thought I should be feeling, I did not think I was getting the level of therapy I should be. The average AHI on the readout has been between 14 and 29 for me since August. I've tried the Encore software but it won't load on my computer. Anyway, after hounding the DME and diagnostic company for a few months, they agreed to do a second titration study which I had back on the 16th and I just got the results. They are changing my pressures from 11 / 7 to 16 / 9. I admittedly am no expert, but that seems like a pretty signifcant change and I wonder why they were so wrong the first time around? I am not looking forward to trying to get used to the new high pressure.

Anyways, I guess my message is you have to be your own advocate in getting treatment, because only you know how you feel and the studies/titration might not be entirely accurate... thanks goodness for this board!

It is very common for labs to fail to get an optimal pressure. Rarely does a patient sleep in the strange environment of a sleep lab like he does in the comfort of his own bed.

Keep monitoring your results - the second titration is also not necessarily optimal.

Did you get a copy of the new study to see for yourself the results? You are entitled to that report for your own records.

Why can't you load the software? Are you on a Mac? There are workaround these issues......

When it comes to sources of variation for AHI from one day/week/month/year to the next, one of the greatest sources is "the patient". IMO, there is a high probability that both PSG studies were accurate.

gosh what a roller coaster you have been on, Im so glad you did that second test, I hope this solves the difficulties you have been experiencing..

I was titrated at home, and I know the numbers were completely screwed up from leaks, and staying in once position for a week.. they were WAY OFF..

If I didnt have an auto, and was able to look at my stats, I would still be suffering at high pressures, or I would have quit by now, for sure.

Ive gone down from eleven to four cm..

I hope you get some good rest soon...

how is the baby doing?

elena

My doctor deliberately started me at a lower pressure than titrated. The reasoning behind that i will never know. i was snoring and having issues. So after complaining it was set to the correct pressure. I warned that i was a mouth breather. Have been as long as i can remember. I have been battling mouth breathing problems from the onset. Finally going back to the docs tomorrow to get fitted for a full face. No one can know better how it is working or how well you are doing than you. I am determined to get good therapy and will hound em till it is right. I am willing to try suggestions from the doctors but after giving it a month or 2 and no results you have to come to realize maybe they are barking up the wrong tree and something is not yet right. I have issues with having trouble to sleep. Could be stress could be part of the apnea could be health or underlying illnesses.
Possibly a combo of all three. Until you hit on the root cause and get it corrected then the chase is on. I want to feel rested and ready to face each day. Living in a fog stinks. Ill keep trying till I get the most out of this therapy as i can.

I can not agree more with your statement of being your own advocate.

pdean, so after you said you were a life-long mouth breather why weren't you prescribed a FF? Have you been trying chin straps, tape? I'm so sorry you've been having this battle but I really admire your determination. Keep us posted.

Be your advocate - yes - be your own Dr after a point! Learn how to change your machine settings and get software and optimize your readings. Don't wait for "them" to change the numbers or you will grow old waiting.

DoriC wrote:pdean, so after you said you were a life-long mouth breather why weren't you prescribed a FF? Have you been trying chin straps, tape? I'm so sorry you've been having this battle but I really admire your determination. Keep us posted.

I cant use tape as i have a mustache. I have been using a chin strap from near the beginning.That works 2/3rds of the time.
I have no idea why they wanted me to go with a nasal mask versus a ff. PErhaps they have a higher failure rate with new pap users when they go to ff first?

I refuse to fail. I will make it work. I feel better than i used to but i dont feel like i am there yet totally.

pdean44 wrote:I refuse to fail. I will make it work.

What a great attitude!

pdean44 wrote:I feel better than i used to but i dont feel like i am there yet totally.

With the kind of determination and intelligence you're bringing to your own therapy, I think "better" will keep getting better and better for you, pdean.

Yes, that's what i'm afraid of, that this one isn't quite up to par either, but I suppose only time will tell!

I don't have a copy of the study yet, I just got the phone call yesterday, though you can be sure I will be pestering them for a copy.

The Encore software and my computer just don't seem to get along. I install it and at the very end it says it needs to restart my computer. Well and good, a common thing for a software install. However when I do restart, there's no Encore software. I've tried it several times and the result is always the same - install, restart, no software on computer. It's just a 32 bit Windows Vista. I plan on trying it on my wife's Windows 7 machine.

Baby is good, Elena, thanks for asking. She has three teeth and she's working on 3 or 4 more. She scoots, babbles, sits up, waves, and pulls herself up. also loves to play with PAP hoses.

I'm currently going between a F&P 431 mask and the Liberty. I'm worried the liberty won't work out so well at higher pressures? I think I read that somewhere.

Recently i've started taking the damn mask off at night and not remembering it which is weird.I go to bed with it on, but sometimes when I get up in the morning, there it is, nicely placed with all the straps reconnected on the side table. Weird. I bet i'm getting up for baby duty and not remembering it since it has kind of become habit.

Mask2sleep wrote:

I'm currently going between a F&P 431 mask and the Liberty. I'm worried the liberty won't work out so well at higher pressures? I think I read that somewhere.

Recently i've started taking the damn mask off at night and not remembering it which is weird.I go to bed with it on, but sometimes when I get up in the morning, there it is, nicely placed with all the straps reconnected on the side table. Weird. I bet i'm getting up for baby duty and not remembering it since it has kind of become habit.

Mask2sleep,

When I have a cold my mask choice is the Liberty and my pressure is 17, so you should have no problems at 11. Occaisionally i get a leak on one of the nasal pillows and then I use a headban to help hold it in place. Does the job nicely. There are also other fixes that you can research by typing Liberty fixes in the search field. There is less of an edge on this mask from most of the other full face options which means less area for a leak to pop up.

The pressures got upped yesterday to 16/9. Quite a change from 11/7. It was surprisingly easy to get used to. But the Liberty was a no go. I could get the pillows to not leak, but in order to get the mousepiece to not leak, I had to get ti so tight it was painful. I think the problem is I have the wrong size. For some reason the DME set me up with a large... and they keep giving me medium other masks. At the diagnostic company for titrations they use smalls on me.

So I got out my F&P 431 small that I got from cpap.com and while I did have to cinch that sucker up a bit more, I got it to have no leaks and I actually feel a bit better rested this morning. Here's hoping it is a start of a habit!

I'll be calling the DME today and telling them the liberty needs replaced with something else. D'oh!

If you liked the Liberty... try the Hybrid... get all 3 sizes of pillows and cushions.

Sadly my DME seems to only offer F&P (rarely), Resmed (hard to talk them into) and phillips (normal). Anything else they won't get... so it looks like cpap.com may get some more business.