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secret agent girl wrote:Okay, another night of only sleeping until 2AM so I hope I'm not too incoherent.

Saw the specialist. Here's a summary:
<snip>

• Her top recommendation was to do a full night titration sleep study.

That was my thinking too,

4 weeks ago I wrote:You had a split night study, and They based your preferred pressure (10) on all of 4 minutes. I think you should ask them to consider a full night's study...

To which you responded

secret agent girl wrote:Um, I'm not very receptive to asking for another study; certainly not without 1) ins. coverage, which I probably can't get for at least a while, and 2) further indication/explication from my report and/or experience that it would be more useful than trying stuff on my own.

Just the thought of the study I had sends me ballistic, even though I would know much more how to advocate for myself in that particular situation. (shuddering with the memory and thinking strongly of having a margherita . . . ) Although if a couple of the "heavyweights" here (Muffy, Rested Gal, or ???) strongly recommended that, I would talk with the doc about it. Reluctantly.

And:

9 days ago I wrote:Do you think that now that you've adjusted to a machine and mask you could tolerate a titration study? Or at least a night in which the impact of cpap on you sleep was observed? Maybe one of those at home PSG packs?

O.

I would highly recommend getting an Autoset like the S8 series Resmed and finding out what is going on for yourself. I have little confidence in sleep studies... mine done in a "lab" storefront by a "top" MD in the business (and that is just what it is). First Rx? 4cm O2... the lowest setting on the machine. Follow up visit a few weeks later? 9.8 cm O2. What the heck? Still not getting a good night of sleep nor anywhere near it by the way. So my suggestion is to get the Autoset, learn about Apnea, etc., get the software and a card reader and find out what is going on for yourself now that you know what your problem is. I believe you will get farther ahead and faster. You may lost a sleep MD - you are cutting into his profits and that will just never do.

I'm so excited... I'm picking up my S8 Autoset today! I have made a bigger improvement in my sleep on my own with a cheap Resmed S8 Escape II than the 'top man in the field" in my area could do over three months or more. Took me all of a week or two. Minor adjustment of pressure, minor adjustment of EPR, change of mask to Mirage Activa and VOILA... I am getting more sleep than ever before. I can hardly wait to see more information and take it to an MD that will work WITH me, instead of guessing, which is what I feel this fellow has been doing.

BTW, don't know if it is just me, but when I go in for sleep studies I am taken care of by what appears to be high school kids who hook me up and supervise the all night session. No nurse, no MD, no nothing. Just a kid to keep us company at this 'sleep center' (located in a strip mall). I think I have paid my last visit to both the 'sleep center' in question and to the supplier they sent me to who charged 4 times what cpap.com charges (and I love the service from cpap.com).

Good luck to you.

secret agent girl wrote:... She was totally cool with my tracking my own data and making changes via the clinician's menu. ...

A very, very good sign. This is a doctor believes it is important for you to be involved in the therapy. Once you prove you have the capability to understand the data, and properly interpret how to respond, she "set you free". Very good sign!

secret agent girl wrote:... She thinks it's "organic" and not "mental". ...

Again a good sign. Those doctors who dismiss this as "organic" forget that during sleep the "it's all in your mind" half-baked theory does not hold water. Though stress can bleed into sleep, it would probably not be as consistent as this.

secret agent girl wrote:... She doesn't have a clue what that's about (or isn't yet saying). ...

Again, another good sign. I would rather see a doctor say "I dunno!" than one who jumps to some (generally wrong) conclusion.

secret agent girl wrote:... Her top recommendation was to do a full night titration sleep study. ...

Going hand in hand with "I dunno!" is the "Let's find out what some tests say!" approach. If you admit you don't know, then you need to try to find something that can guide any potential therapy.

secret agent girl wrote:... Obstructed breathing is a continuum from apneas to hypopneas to RDIs. ...

Yup. Once they never included the Respiratory Effort Related Arousals (RERAs) in these reports. I had a previous sleep specialist (and a sleep tech), who recommended BiLevel therapy just based on the RERAs during a sleep study. They saw that as I slept the effort of breathing against the CPAP constantly caused me to arouse from one level of sleep up to the previous level. Another (apparently less competent) sleep specialist later dismissed that diagnosis. I even provided the detailed sleep study. The new sleep study showed the same thing ... he ended up prescribing BiLevel (I needed the pressure changed, but that was all). Of course, once I had the pressure set, I did not return to that second sleep specialist.

So, yes. If you now have problems with RERAs then it could lead you to feeling worse, even though the apneas and hypopneas are now much better. Sorry to say that, since it means another sleep study really will be needed to find it, if that's the case.

secret agent girl wrote:... I like this doc and respect her opinion. She's experienced, seems competent, and is not dismissive of my questions/concerns. ...

A definite keeper.

secret agent girl wrote:... I may try a sleep aid to see if it can help me get past the 2-4AM hump of waking up and not being able to get back to sleep. ...[/quote

secret agent girl wrote:... I think it's likely I'll end up going for another study. I will insist on the most experienced and skilled tech (and get their name ahead of time so there are no last-minute mixups). I also plan to require using my mask for at least part of the night, and will request that we try a FFM for part of the time, just to put that question to rest. And I suppose I'll comply with dr's request that I use a sleep aid drug to insure adequate titration and measurement time. ...

All good approaches. I know you would rather not deal with a sleep aid, but you want them to try as many things as possible. Oh, and that can be the justification for asking for the sleep tech. Your doctor suspects something .. such as RERAs .. contribute to how you feel. You are requesting someone who can spot those and perhaps try BiLevel therapy ... which would offer more relief than the EPR feature of your current system.

secret agent girl wrote:... At my annual checkup, conveniently in a couple weeks, I am still going to ask for several lab tests, just to rule out a few things.
Again, always a good thing to check. As we age things change ... sometimes quickly ... and the rest of our body sometimes goes into revolt until it becomes acclimated to the changes.

Here's wishing you well as you continue down the path! It's not easy. You've been remarckably patient and put your heart and soul into this. We all want to see you do better. We know that feeling and would never wish it on anyone.

That was a great visit! Sounds like you have a plan for resolving your challenges!

Thanks for the update Secret Agent Girl, I've been following your story with great interest. I hope you can find time to do the second study soon.