Feeling Fraudlike

[Violet]

Feeling like a fraud because my numbers are so low. Oh, I'm happy my numbers are low, I'm lucky/blessed, but now extremely frustrated. Why do I still feel so exhausted still. But on the good side, I guess my mask is working, hardly any leaks. Right? And, I've probably caught it early maybe.

RT said "she's not a Dr., but doesn't know why I'm even on CPAP, my numbers are so low, maybe I need BPAP instead".

Haven't talked with my Sleep Dr. yet, data currently on way to him. See data below:

Device Settings:
Min Pres 5.0
Max Pres 10.0
EPR full time level 0.0

Pressure
Med: 9.8 95th % 0.0 Max: 10.0

Leaks
Med 0.0 95th % 0.0 Max 102.0

AHI & AI Events
AI 0.3
HI 2.7
AHI 3.0
% in Apnea 0.1

Usage
day 4 hr: 28
Total Days Use:29
Avg Day Use: 7:32

[Slinky]

You're RT is giving you a bum steer. Your pressure or pressure range doesn't have diddley-squat to do w/the severity or mildness of your 0SA. I'd take any thing or any advice she told me w/a huge grain of salt in the future. She doesn't sound any too swift for an RT!!

As to why you still feel so tired: any improvement at all since you started xPAP therapy? How long have you been on CPAP therapy? Did you get a copy of the full scored data summary report w/condensed graphs IN ADDITION TO the doctor's dictated interpretation from both your sleep evaluation AND your in-lab titration? Do you have a copy of your script? The answer may well be right there in that full scored data summary report and ignored by the sleep doctor. The RT might not have set your pressure range correctly. You may well have another or other sleep disorder(s) not addressed by CPAP therapy.

Have you been checked thorooughly by your family doctor for blood work, nutritional status, cardiac and pulmonary conditions, thyroid, etc? If not, that's another avenue to explore once you're sure your CPAP therapy is up to snuff according to your evaluation and titration data.

Have yuo checked for possible side affects from any medications or OTC products you are taking? What about symptoms of any other health disorder you are aware of having?

[Violet]

You're RT is giving you a bum steer. Your pressure or pressure range doesn't have diddley-squat to do w/the severity or mildness of your 0SA. I'd take any thing or any advice she told me w/a huge grain of salt in the future. She doesn't sound any too swift for an RT!!

As to why you still feel so tired: any improvement at all since you started xPAP therapy? How long have you been on CPAP therapy? Did you get a copy of the full scored data summary report w/condensed graphs IN ADDITION TO the doctor's dictated interpretation from both your sleep evaluation AND your in-lab titration? Do you have a copy of your script? The answer may well be right there in that full scored data summary report and ignored by the sleep doctor. The RT might not have set your pressure range correctly. You may well have another or other sleep disorder(s) not addressed by CPAP therapy.

Have you been checked thorooughly by your family doctor for blood work, nutritional status, cardiac and pulmonary conditions, thyroid, etc? If not, that's another avenue to explore once you're sure your CPAP therapy is up to snuff according to your evaluation and titration data.

Have yuo checked for possible side affects from any medications or OTC products you are taking? What about symptoms of any other health disorder you are aware of having?

The only improvement is the brain fog is less.
On CPAP going into the 5th wk.
I did not get a copy of the script (do you mean prescription for the pressure etc.?)
I did get a copy of the graphs along with the data. I only posted the data.
Full cardiac, pulmonary, along with numerous phsyicals and blood draws to check for everything at least three times in December when PCP was working with me.
Still waiting to hear from Sleep Dr. re: this data report.
And, I can only think that any side effects for other health disorder like Gerd and Meniere's are dizziness which in fact has gotten worse since starting CPAP.

So I'll wait for one week for the Sleep Dr. to address that I still don't feel well and then give Sleep Dr a call.

Thanks for your help.

[GaryGarland]

Unless i'm reading the results wrong, your pressure is at 9.8 95% of the time - as your machine is set for 10, you're near your max most of the time - i'd question if you need to raise the upper end of your pressure.
if you were constantly floating at the lower level of 5%, i would opine that you needed to possibly lower or remove the machine (i found 4 to feel like suffocating) but in my humble newbish opinion, 10 is a significant number.
as for tired all the time - hey, join the club! (i know i am) - but also, maybe the health club - diet and exercise would probably help (i was feeling marginally better before i broke my foot and now need a hiatus from the wellness center). though i'm often tired, i'm far less tired than before APAP - didn't fall asleep during my haircut for the first time in probably 18 months! my cognitive skills are also much improved. my sleep is still disturbed - back aches, hose hitting me in the head, waking from leaks, etc. - but those are minor compared to before the cpap.
i fell asleep with my baby on my neck for 15 minutes last night before bedtime, no cpap - i woke myself when i felt i wasn't breathing - even with the hose and other paraphanelia, i get deeper sleep as a hose head.
just my .02

[CollegeGirl]

Violet - just a few thoughts -

You haven't been on CPAP terribly long yet. Keep on truckin.' It takes some people a lot longer than others to feel better. It took me a very, very long time to iron out the details of my therapy (finding the right mask, machine, etc. can take some time) and start feeling better. Don't give up! It WILL happen, when all the variables come together in the right way for you.

Looking at the graphs that go along with that data probably won't tell us anything - but it might. You might want to post them anyway just to see if anything springs to mind for the regulars here.

Lastly, sometimes there are "little" things we don't notice during the night that are keeping us from sleeping as well as we need to. It wasn't until I switched from a full face mask to nasal pillows and started taping that I REALLY started getting good sleep. The full face mask was keeping me from getting comfortable throughout the night, I was constantly rearranging where my head was on the pillow, etc, because I'm a stomach sleeper, and I was just constantly trying to get comfortable. I wasn't even really aware that all this was going on and interrupting my sleep as much as it was.

Is your hose hung up? Is your pillow working for you in combination with your mask (unless you're a back sleeper, in which case that obviously won't matter. lol)? Is there ANYTHING else you can think of that could be making you uncomfortable while you sleep?

If it's not anything like that, there COULD be something else, in addition to sleep apnea, affecting your sleep. Restless legs, maybe?

Like I said at the beginning - could be that you just need more time. Good luck, and hang in there!

[dieselgal]

I was thinking the same thing Gary was thinking. It sounds to me like you should raise your settings a little on both ends.
The number 10 to me is not insignificant at all, in fact that is about where I am. Like Slinky says, don't give much credit to the RT in this matter because it doesn't sound like she is really to savvy.

[Pineapple]

RT said "she's not a Dr., but doesn't know why I'm even on CPAP, my numbers are so low, maybe I need BPAP instead".

Shame on the RT - if your pressure is Med pressure is 9.8, something is causing that pressure to go up from 5. Obviously you need help at night. Someone can correct me if I'm wrong, but isn't a BPAP normally for people with high pressures?

I didn't see much progress before week 4, as for the tiredness it still is with me some, a lot of people have stated it was the hardest symptom to get rid of. You may just need time.

I agree with Slinky, Garyland and Dieselgal that a talk with the Doctor is in order. There could be other factors causing your tiredness but it could also be a pressure problem. My thought is the lower limit on your pressure needs to raise so you don't spend so much time getting up to the right pressure, but Gary has a point that you're pushing the upper limit. See what the doctor thinks.

[Violet]

Have done some research here, but still cannot figure out how I can insert my graphs. I received them as an e-mail. I can scan them on to a thingamabob & take them from my PC. If there is some way I can get the graphs posted from my PC, let me know.

But basically, ya'll are saying that even though my numbers are low, the need is for CPAP is legit. What about the leak rate of Max 102.0?

Before CPAP, 12/6/08 I worked out at gym 4 days a week at lunch. Cardio and weights. Then, had to stop for a month due to the extreme fatique, and now have started back up replacing weights for now to leg work on the floor an stretching to get flexibility back and relieve some unknown stress perhaps.


But thanks, I know, give it time.

[Slinky]

A Leak rate of 102.0 is OUT OF SIGHT. No wonder you aren't getting any relief! You aren't getting any therapy to speak of.

[jnk]

A Leak rate of 102.0 is OUT OF SIGHT. No wonder you aren't getting any relief! You aren't getting any therapy to speak of.

Slinky,

If I'm reading her original post at the top correctly, isn't her 95th-percentile leak rate 0.0? If so, could it be that the maximum, 102.0, which I assume is from software data, represents a moment when she took off her mask, or something?

jeff

[Violet]

My leak graphs do show when I separate the mask hose from the main hose in the a.m. every a.m. and once in a while if I get up. Otherthan those events leak spikes on the graphs are minimal and very low.

[jnk]

. . . still cannot figure out how I can insert my graphs. . . .

Violet,

I've never posted any graphs here myself, but my understanding of how it is done is that people post their charts at a photo hosting site on the internet and then link to the location there in their post here. (Don't forget to edit out personal information, first, though.)

jeff

[Slinky]

I didn't go back up and look at her posted data again, just responded to her 102.0. Duh. Moi bad. I should have double-checked when I knew I hadn't picked up on a high leak rate in the original post. Glad you caught that, jnk!!!!! Thanks. Keeps me "honest".

I just learned, if you can e-mail your data files, you can e-mail them to an album you create at photobucket.com and then you use the [ img ] to insert the photobucket URL followed by a [ / img ] and the images will appear in your post in the forum. (Leave out the spaces [ img ] and use the image code above.

[jnk]

. . . Glad you caught that, . . .

We're all here to support each other. Glad I got to support you once in return for the oodles of times you've supported me!