Need help with results etc....Thank you

[bookworm]

I'm a little confused about my results and the fact that I'm still so tired all the time. I feel no difference in how tired I am. I just get up to pee less. I've been using cpap for about 3 months. I was originally checked for narcolepsy because the dr did not suspect apnea since I didn't have "common characteristics" as he put it (his words... I'm thin, relatively young, don't sleep with my mouth open, don't snore, don't drink, don't do any drugs supressing my breathing - or drugs period - etc, don't have any tonsils, adenoids, and don't have the "throat of a sleep apnea person" according to the dr). After the test, he said I had sleep apnea.

My results without cpap:

sleep efficiency: 69%
awakenings after sleep onset: 57
sleep period 6:11
total sleep time: 276.5 mins (4.6 hrs)
Central sleep apneas: 0
Obstructive sa's: 0
Mixed apneas: 0
Hypopneas: 35 (7 on my back/28 on my left side)
RERA's: 184 (51 on my back/133 on my left side)

My results using a cpap:

sleep efficiency: 68.2%
awakenings after sleep onset: 29
sleep period 6:03
total sleep time: 305.5 mins (5.09 hrs)
Central sleep apneas: 0
Obstructive sa's: 0
Mixed apneas: 0
Hypopneas: 1 (1 on my back)
RERA's: 115 (115 on my back)

So my sleep efficiency was actually less w/the cpap machine.

MSLT:

nap 1:
time in bed: 24 mins
total sleep time: 13 mins
sleep onset: 8:29
rem latency: 3:30

nap 2:
time in bed: 20 mins
total sleep time: 0
sleep onset: 0
rem latency: 0

nap 3:
time in bed: 27 mins
total sleep time: 8 mins
sleep onset: 11:00
rem latency: 10:30

nap 4:
time in bed: 26:30
total sleep time: 12:00
sleep onset: 11:30
rem latency: 2:00

He started me on nuvigil and while it helps me be alert the first couple hours of the day and helps to keep me from being very moody and crabby, I liked it. However, it does make me anxious and lately I've felt very emotional as far as being able to easily cry.

I'm a 32 yr old female....and while I'm thin, I haven't worked out in a long time. When I did consistently work out, I NEVER got energy from working out. Just walking on a treadmill at 4 mph would have my heart rate up to 200 in less than 3 mins and I always felt so exhausted after working out even if I didn't work out that long. Even after weeks of consistenly working out, my rate never dropped. I don't know if I have a hight heart rate in general or if I'm just a sedentary thin out of shape person. I'm starting to get paranoid and thinking my heart is damaged or something. Or maybe now that I've hit my 30's I really need to concentrate on trying to stay in shape instead of the younger years when it's less of an issue.

And when I say thin....I guess that depends on thin in todays society. By tv standards, i'm not thin. I'm not a size 0. I'm 5 foot 6.5 inches, 143 pounds. By medical standards, I'm healthy and in the right range. I have also been slightly anemic my entire life and often am vitamin d deficient so I take supplements for those. So I don't know if the chronic anemia on top of everything else has done any damage.

Sorry for all the details...I'm just tired of being tired and also tired of going to doctors who never see you on time and then rush you out of your own appointment in under 5 mins and don't give you enough time to voice all your concerns.

Can you tell I'm tired and crabby??

Thanks for any help in advance!

[avi123]

[quote="bookworm"]

My results without cpap:

sleep efficiency: 69%
awakenings after sleep onset: 57
sleep period 6:11
total sleep time: 276.5 mins (4.6 hrs)
Central sleep apneas: 0
Obstructive sa's: 0
Mixed apneas: 0
Hypopneas: 35 (7 on my back/28 on my left side)
RERA's: 184 (51 on my back/133 on my left side)

My results using a cpap:

sleep efficiency: 68.2%
awakenings after sleep onset: 29
sleep period 6:03
total sleep time: 305.5 mins (5.09 hrs)
Central sleep apneas: 0
Obstructive sa's: 0
Mixed apneas: 0
Hypopneas: 1 (1 on my back)
RERA's: 115 (115 on my back)

So my sleep efficiency was actually less w/the cpap machine.

MSLT:

nap 1:
time in bed: 24 mins
total sleep time: 13 mins
sleep onset: 8:29
rem latency: 3:30

nap 2:
time in bed: 20 mins
total sleep time: 0
sleep onset: 0
rem latency: 0

nap 3:
time in bed: 27 mins
total sleep time: 8 mins
sleep onset: 11:00
rem latency: 10:30

nap 4:
time in bed: 26:30
total sleep time: 12:00
sleep onset: 11:30
rem latency: 2:00

Question:

The above results were from sleep study (PSG) or from a mobile XPAP at home, and why do you call them naps?

[bookworm]

It was from a PSG. I went to a sleep place. I didn't know they could do them at home. I called them naps because that was on the report. What they did is have me take a series of "naps" and see how long it took me to fall asleep etc (I believe that was part of the Narcolepsy test...?)

[robysue]

I'd write more about your specific numbers, but I need to leave for home.

You might find my blog entry Understanding the data in your sleep test report useful for figuring out what all those numbers you posted mean. Read my blog entry, see if it helps. If you still have questions, post again (in this thread is fine) and either I or another friendly forum member should help you figure it out.

[Pugsy]

The naps were part of the testing for narcolepsy. The measure how quickly one gets to sleep and to REM.
Avi123 may not see my comment as I think he has me on his Foe list.

It is not unusual to have worse sleep during the titration part of the sleep study. Mine was horrible.. I slept all of 153 minutes out of an 8 hour night. Had almost 300 minutes in first sleep study without the cpap machine.

Getting up to pee less during the night is a positive sign that the therapy is indeed working. It was my first sign that the therapy was working. The general tiredness and fatigue took a lot longer to improve on and still isn't what I would like but I have other issues that impact on the quality of my sleep.

3 months is not really very long? How many hours of sleep using the machine every night? Do you wake up often? If so, do you know why? Pain? Meds? Bed comfort? Many things can impact how we feel. General health issues?

What machine do you use? Please add your equipment to your profile. If you are lucky you have a full data machine and hopefully one that has software easily available so you can see for sure if the therapy is as optimal as it can be.
Unfortunately there often much more to "feeling" better than strapping on the mask and turning the machine on.

[bookworm]

I'm not really sure what the machine is. Even the booklet I have just says "Phillips Respironics - Remstar".

I didn't know I could look at any info on the machine. I just tried. It had a compliance thing. I started using it 5/4/11. It says that I average 3:36 per day. I'm really confused by that. At minimum I think I still get 6 hours no matter what of sleep per night but maybe not? My pressure is 7...which I don't like. 5 was better and I have it on 3 for humidity. At 7 it blows my mouth open. At 5 it didn't.

As for other health issues...yes I have had a back issue-a fracture at my S1 vertebrae 3years ago...some nights I am fine...some nights it starts hurting after about 4 hours. The other issue...I've always been an extremely "light" sleeper...whether that is because of a sleep disorder I'm not sure. I do know that I deal with symptoms of complex ptsd. So I know that not getting sleep is one issue and also, I wonder if the chronic stress, hypervigilance while sleeping and in general, sleep problem itself is all wrapped up into one and/or if it's harming my heart.

It's kinda embarassing putting all this on here...but if I'm going crazy, I may as well tell all and sundry....

[cflame1]

If you read around the dial on the machine does it say anything other than Phillips Respironics - Remstar?

Otherwise look at the bottom of the machine... should have a DS number... what's that number?

[bookworm]

And...I also have cluster migraines....

[cflame1]

make sure you read the links in Robysue's post then.

[bookworm]

There was a barcode and IPX1

[bookworm]

Sorry for the lack of info. I didn't get much from my sleep doctor. I mean I was diagnosed in August 2010 and didn't get my cpap machine until May 2011. They kept telling me they were waiting for insurance approval...then I would call Aetna and they would say it wasn't necessary...that it was covered 100% and went back and forth and back and forth for weeks...even having Aetna send them stuff confirming etc....finally when I called their office in tears because I had fallen asleep driving...they got me a cpap machine that day....

[avi123]

Sorry for the lack of info. I didn't get much from my sleep doctor. I mean I was diagnosed in August 2010 and didn't get my cpap machine until May 2011. They kept telling me they were waiting for insurance approval...then I would call Aetna and they would say it wasn't necessary...that it was covered 100% and went back and forth and back and forth for weeks...even having Aetna send them stuff confirming etc....finally when I called their office in tears because I had fallen asleep driving...they got me a cpap machine that day....

Reply:

At this point I am ready to take a guess that you suffer from a sleep disorder that is not OSA but could be a comorbid with sleep disorder (underlying medical condition). Looking at the list of OSA comorbidities and your symptoms the one that strikes me most is Hyperthyroid (Graves Disease), with which I am very familiar. If I am correct, then it has nothing to do with CPAPs but it is very easy to treat.

Check:

http://www.mayoclinic.com/health/graves-disease/DS00181

The following of your symptoms are classic for this disease except of being anemic which relates more to Hypothyroid:



I'm a 32 yr old female....and while I'm thin, I haven't worked out in a long time. When I did consistently work out, I NEVER got energy from working out. Just walking on a treadmill at 4 mph would have my heart rate up to 200 in less than 3 mins and I always felt so exhausted after working out even if I didn't work out that long. Even after weeks of consistenly working out, my rate never dropped. I don't know if I have a hight heart rate in general or if I'm just a sedentary thin out of shape person. I'm starting to get paranoid and thinking my heart is damaged or something. Or maybe now that I've hit my 30's I really need to concentrate on trying to stay in shape instead of the younger years when it's less of an issue.

And when I say thin....I guess that depends on thin in todays society. By tv standards, i'm not thin. I'm not a size 0. I'm 5 foot 6.5 inches, 143 pounds. By medical standards, I'm healthy and in the right range. I have also been slightly anemic my entire life and often am vitamin d deficient so I take supplements for those. So I don't know if the chronic anemia on top of everything else has done any damage.

[DoriC]

Bookworm, please disregard completely whatever Avi is telling you, his posts are pretty outrageous and completely out of left field so we try to warn newbies whenever possible. He's doing what he accuses the veterans here of doing, being "doctor mavens" but no one ventures any medical "guesses" other than their experience with sleep apnea as it pertains to finding solutions to problems with masks, machines, pressure settings,etc. We also have many knowledgeable members who can talk about diet, nutrition, and some professionals like MDs, RTs who can give us a different perspective. You've come to the right place to get you started on the road to success, so please give us as much info as you can about your exact machine, name of mask, pressure settings,etc and read here as much as you can and ask lots of questions. The folks on this forum will amaze you and take you under their wings I assure you. Good luck.

[Pugsy]

I am thinking that this got you the diagnosis.

Hypopneas: 35 (7 on my back/28 on my left side)
RERA's: 184 (51 on my back/133 on my left side)

That is an AHI of roughly 7.6. Did your report happen to mention Oxygen levels? I also suspect the RERAs factored in the mix.

Let's see if we can figure out what machine you are using barcode and X whatever isn't it.

Look at the link in my Profile...click on it and see if your machine visually looks like mine.
If so tell us exactly what the machine says on the top and side (if anything on the side)

If not scroll through these and see if you spot it.
http://www.cpaplibrary.com/machines.html
Again tell us what it says on the top or sides.

[archangle]

There was a barcode and IPX1

Be sure and take the water tank out before messing with the machine if you have a humidifier.

Does the label on the bottom on the bottom say "REF" in a square box next to 150? Or some other number ending in 50?

Above or below the display, does it say "REMstar"? Is there any other text after "REMstar" such as Plus, Pro, Auto?