Still confused about data...?

[psychomamma]

ok, a while ago I posted about my wonderings if I even HAD sleep apnea and I posted some numbers. From my sleep studies, it looks like I have no apneas, very rare hypopneas -- but my Respiratory Disturbance Index (RDI) is 32.7 and my RERA is 24.5. My REM RDI was 45. (AHI was 8.2 in REM and 1.9 overall)

Everyone here told me that I clearly did have sleep issues based on my numbers and definitely needed a CPAP. I have struggled with it for weeks and am finally sleeping -- last night was my record - 5.5 hours!! I actually felt good waking up this a.m.!!

My question is: I got Encore Pro on the black market and a card reader so I can download my own data. My data looks excellent with an AHI of 0.5 and no apneas or hypopneas. That SOUNDS great, except I never DID have a high AHI, or any apneas/hypopneas. I don't see any data on my readouts at all for spontaneous Respiratory Disturbances, or RDI numbers. How do I know if THOSE are getting better?? I'm confused about what my respiratory disturbances even ARE - if they are not apneas, what are they? What is waking me up? And why don't I get any numbers for that?

Any help you can give would be greatly appreciated!!
Lisa...

[psychomamma]

nobody??

[mars]

Hi Psychomamma

I am sorry, but I do not know anywhere near enough to be able to help you.

However, there are very likely people here who have some ideas that may help, so hang in there.

It may also help if you are able to post a waveform reportn of a typical night, so that all the different events (and non-events) can be viewed in relation to each other.

cheers

Mars

[ozij]

my Respiratory Disturbance Index (RDI) is 32.7 and my RERA is 24.5. My REM RDI was 45. (AHI was 8.2 in REM and 1.9 overall)

What you have is "Sleep Disordered Breathing" - which mean breathing disturbances are jogging yu out of sleep more than 8 time an hour in REM sleep.

RDI is the index that count all respiratory disturbances that arouse you from sleep, even if they do not cause your oxygen level to plummet, or you breathing to wane according to apnea or hypopnea criteria. Those disturbance still disrupt your sleep - and the aim of the therapy is to stop those disruptions.

Can the Respironics software show you if your SDB is properly treated? I guess, in your case, only insofar as snoring is (was) part of your problem - if you snored and no longer do, the machine can show you that.

However, the most important datum is this:

am finally sleeping -- last night was my record - 5.5 hours!! I actually felt good waking up this a.m.!!

O.

[psychomamma]

Well, I don't really snore and my oxygen level never dropped beneath 95% in my sleep study.

I have just begun (after a month) being able to fall asleep with the machine. I did feel good the other night when I got 5.5 hours of sleep, but probably only because I have been so severely sleep deprived for the last month of trying. I have a leak level that is too high and awful aerophagia after a few hours on the machine.

I don't know about the rest of you, but I am NOT going to sleep the rest of my life on a machine if there are no efficacy results. They can't tell me WHY I am waking up, but they want to prescribe me a solution that doesn't tell us if it's fixing the problem???? That's like going to my doctor and my doctor saying 'we don't know what's wrong with you, but we'll just put you on antibiotics for the rest of your LIFE and that should fix you right up!"

Ridiculous.

[ozij]

In other words: You won't use cpap until Resprionics invents one that will recored your EEG so it could tell you it solved your RERA's.

Or maybe another machine (Sandman?) will show you your flow limitations in a way that the Respironics can't? Would you buy a Sandman to make sure?

Would you use any machine, for a month, and keep track of how you feel, before you decide to chuck it? After all -- something brought you to the doctor to have a sleep study. How about using your response (psyche and soma) to gauge efficacy?

They can't tell me WHY I am waking up, but they want to prescribe me a solution that doesn't tell us if it's fixing the problem????

They did tell you why you're waking up: you're waking up because you're struggling to breahte through a narrowed airway and the effort is waking you up.

Wishing you all the best,
O.

[Wulfman]

Do you have a copy of your sleep study?

Weren't they able to determine the nature of your disturbances in the sleep study?

Den

[psychomamma]

Sorry, guys...can you tell I'm frustrated?? I slept without my machine last night and slept like a ROCK for a blissful 10 hours. Obviously I will be tired today, but it felt so good to just sleep without any issues!! On the machine I can't fall asleep, then when I finally do I wake up in enormous pain because of aerophagia and a headache because of the chinstrap, etc. etc....

Well, my overall AHI was only 13, which I know could still use some work, but the main problem was that my RDI was 25, and 43.7 in REM sleep - 130 respiratory arousals.

It says in my report that "rare premature atrial contractions and several premature ventricular contractions were noted". What the hell does THAT mean?? No Cheyne Stokes breathing pattern and no EEG or ECG abnormalities.

It does say on there that oral appliance modalities are alternative options for me.

I think my biggest problem is that I have never even MET the sleep doctor yet. I got the study rushed through, but am still waiting for the followup consultation. I finally meet her this Thursday and will get some info on what all this means. I just know that so many people here love to get their data and are assured and motivated by seeing good data. I am the same type of person - I want to see my data every morning and know it's working. If I see that, I'll suffer through anything. But to suffer, and NOT know if it's even working....? I just can't do it anymore...

[Wulfman]

Yes, your frustration is very evident. Sorry.....we're just trying to help as best we can. We can only empathize.

I'd suggest doing a Google search on those terms. There are quite a few that come up.
This link mentions both:

http://en.wikipedia.org/wiki/Premature_ ... ontraction


Den

[psychomamma]

I apologize if my tone is offensive -- it is certainly not all of you wonderful people that I am frustrated with!! I can't IMAGINE where I would be without you all!!

But, I am really frustrated at the process we all have to go through to get used to this treatment. I think on my worst nights, if I can plug in my Smart Card in the morning and say "it's working!" then that gives me the tiny motivation that I need to put the mask on the next night. Because I can't get that confirmation, I have a hard time going through it yet again....

I can't wait to meet with my sleep doc and also my brother in law who is a cardiologist....

Thanks so much for all your help and patience with me!!

Lisa...

[enso]

Heya, psychomamma! I'm sorry you're having a tough time adjusting right now. I don't find your posts offensive at all.

This is such a frustrating process for most of us at some point or another. While I think it's vital (pun intended) for each of us to advocate for our best medical care, there are still many in the medical community that don't believe in collaboration. I am very nervous about starting on my own journey with this.

One though I had from your descriptions...Do you think you might need to adjust your mask, or get a different one? I hope that meeting your sleep dr will get you some good answers and additional support.

Another aspect to this type of situation is the ambiguity inherent in working with such a complex systems as the functioning of a human body. (And it sounds like you have a potentially more complex than most situation with the cardiac notes.) I would love simple, clear-cut answers to all this. It's important to realize that as much as we put on the numbers, they are not everything. You have many 'measurement systems' available to you to assess your current state of being as well as progress. Maybe you can find some other/additional things to give you the motivation after your worst nights?

Maybe you need a little break, or some self-care to bring you a little relief. Restore your patience to keep at it until you get the results you need.

Hang in there!

[drubin007]

I really cannot offer much to your thread Lisa, but want to wish you good luck!

I share the same sentiment as you, being a noob on the cpap myself. (tonight will mark 4 weeks or 28 days on a hose).

I still question if I have OSA, and when I see my ENT am going to demand copies of both sleep studies (with and without cpap, they milked my insurance for 2 studies).

Been doing the hose for as mentioned 28 nights and personally, do not feel any different. Never knew I had a problem in the first place, and feel no different now. One thing I will say though... I cannot sleep without the cpap now... (pugsy put a vodoo hex on me) if I get up early and take it off and try to go back to sleep I can't. It does become habit, even if it does suck.

I lurk in here a lot and read what everyone has to say... Still trying to figure out if I belong on it... guess only time will tell.

I know it sucks, but give it time... you actually fo get used to it.

[lanndi]

drubin007 on Mon Jun 08, 2009 2:56 pm

I still question if I have OSA, and when I see my ENT am going to demand copies of both sleep studies (with and without cpap, they milked my insurance for 2 studies).

drubin -- just call the medical records department and get a copy of the results yourself. I walked in and had them 3 mins later.

[twokatmew]

I still question if I have OSA, and when I see my ENT am going to demand copies of both sleep studies (with and without cpap, they milked my insurance for 2 studies).

Been doing the hose for as mentioned 28 nights and personally, do not feel any different. Never knew I had a problem in the first place, and feel no different now. One thing I will say though... I cannot sleep without the cpap now... (pugsy put a vodoo hex on me) if I get up early and take it off and try to go back to sleep I can't. It does become habit, even if it does suck.

I lurk in here a lot and read what everyone has to say... Still trying to figure out if I belong on it... guess only time will tell.

I know it sucks, but give it time... you actually fo get used to it.

"Milking" the insurance co for two studies is typical -- the first to diagnose, and the second to determine pressure and mask.

I guess I'm lucky. Last night was my third with CPAP, and although I'm not feeling great, I sure do feel better than before CPAP. I'd like to see my data too, but my first concern is adjusting to CPAP therapy and feeling better. I've heard it can take months, from three friends who've been on CPAP for years and have benefited greatly.