Another quote from Sleep doc visit.....

[grumpygirl]

Yesterday after questioning my sleep doc (PA) about why I still felt so fatigued after getting such great AHI and AI , Leak numbers etc. her answer really jarred me. She said something like "well, cpap therapy won't always make people feel better or have more energy, it is sometimes a nice side effect of therapy but we don't like to tell our patients that they will always feel better by using a cpap." I said that I had always thought that cpap would allow me to feel more rested and in turn make me feel better in order to get more pleasure out of living. She didn't think much of that and said that is not usually the case. I must admit I was shocked by that insensitive answer that held no glimmer of hope for those of us who are still searching for that "good feeling".
Instead of trying to find out WHY I still did not feel rested she just kinda blew it off as-Oh well, that's just the way it is!! I am still a bit depressed by that revelation and discouraged to know that my sleep doc is a FLAKE and not really interested in my well being!!
I realize that maybe not everyone will feel like they are 25 again after cpap therapy but I do think she should have at least given me SOMETHING to hold on to- maybe do some blood work or at least ask me some questions about my sleep habits-anything to make me feel like she was trying to investigate this thing.
Am I being overly sensitive or picky or is this really how it is going to be-- I will NEVER feel truly rested again and I might as well GET USED TO IT??? GRUMPYGIRL!!!!

[Gerald]

Grumpy.....

It'll help if you focus on the "bottom line".......What is your blood O2 saturation percentage while you're asleep?

O2 saturation is actually what all of us are struggling with.......suffocation is the issue....not whether we snore or not.

You need a recording oximeter....a tool that will allow you to test yourself every night for a couple of weeks...so that you know whether you're getting the correct O2 saturation levels...or not.

Once you've tested your O2 levels, you'll know whether or not the problem is your CPAP system....or something else.

Gerald

[Wulfman]

How do you have your Vantage configured? Auto? CPAP? Pressure(s)? EPR?


Den

[Ruby Vee]

Grumpy.....

It'll help if you focus on the "bottom line".......What is your blood O2 saturation percentage while you're asleep?

O2 saturation is actually what all of us are struggling with.......suffocation is the issue....not whether we snore or not.

You need a recording oximeter....a tool that will allow you to test yourself every night for a couple of weeks...so that you know whether you're getting the correct O2 saturation levels...or not.

Once you've tested your O2 levels, you'll know whether or not the problem is your CPAP system....or something else.

Gerald

Where does one get a recording oximeter? Buy it? Borrow it? Rent it? Sorry if it's a stupid question -- I'm new at this.

[jnk]

For some, it is depressing to hear that a particular form of treatment may not solve all their health problems. For others, it is even more depressing if they put all their hopes on something making a big difference and then have to deal with the disappointment of things not working out as they had hoped. So I think some doctors are very careful not to promise anything or create any false hopes. Other doctors prefer to foster enthusiasm and speak very positively in order to produce that little extra placebo boost we patients so often need.

Sleeping better and breathing better should help everything in life. (It certainly won't hurt.) But we may not feel all the benefits on a day-to-day basis, depending on other factors--some within our control, some not.

There have been times that I may not care for a doctor's style, but I stick with him or her because I appreciate his or her judgment and skill with the details. I would tend to assume her motives were good. Sometimes the best and the brightest in any medical field are the ones whose communication skills and people skills leave much to be desired. But if you need a doc with good communication skills, that may affect your choice of doc.

[grumpygirl]

My machine is set in auto mode with setting of 9.4-13.4 with EPR 1 on settling only. My numbers(stats) are very good but aerophagia is a problem when I set to titrated pressure of 12.

[Wulfman]

My machine is set in auto mode with setting of 9.4-13.4 with EPR 1 on settling only. My numbers(stats) are very good but aerophagia is a problem when I set to titrated pressure of 12.

OK.....I remember now.

Den

[6PtStar]

Where does one get a recording oximeter? Buy it? Borrow it? Rent it? Sorry if it's a stupid question -- I'm new at this.

Ruby, many DME's (except mine)that you get your cpap supplies will loan or rent you one for a night or two. Some do want a note from your doc. A lot of us that are stuck on the hose for the rest of our lives will buy our own. It is easier and it is there when we want it. If you do a search of the board you should find a discussion of several types and the best place to purchase them.

Jerry

[anotherRandy]

I got "other" benefits from Xpap. I can't say I feel more "rested," but I no longer take a nightly sleep aid (Restoril or Ambien) and my PVC's have completely gone away (benefit from less adrenalin in my system, I'm guessing).

So, chalk me us as a happy camper.

[kteague]

Grumpygirl,

If what your PA relayed to you about expectations is based on the experience of her patients, it's certainly understandable why they've had that experience!!! While I don't want a doctor to give me false hopes, neither do I want them to set the bar so low that they can consider their treatment a success by doing nothing to reach it. Sorry to hear you had this discouraging encounter.

I do agree that not everyone gets remarkable results in how they feel on cpap, but I personally feel she was remiss to dismiss how bad you feel without doing due diligence to exhaust every possible cause and solution. It's going to be up to you to push for that, and it might not be with her.

Checking your oxygen is a good starting point. Snores - IF they cause arousals they can disturb sleep, but without a sleep study you won't likely know that. Take one step at a time. It may not get good, but my guess is it will get better.

Kathy

[JeffH]

After being on the hose for eight years I had nasal surgery and couldn't use my cpap for about 9 days total. Talk about feeling like run over road kill. When I get to thinking it isn't doing me as much good as it should (and I still think that at times) I try to remember how absolutely miserable I was trying to sleep in a recliner for 9 nights.

It's all relative...

JeffH

[jda1000]

I think it's important for the physicians not to build false hope, but I also have felt more than a little "brushed off" by both my DME and my MD since starting CPAP in January. From my experience so far and from all I've read, it seems most users find CPAP improve their general sense of well-being, but also it's variable night-to-night, takes time to get dialed in, and then...changes.

Even so, my own preference by far is for doctors that listen and use what they hear to ensure they've been thorough.