Advice please; Am I doing everything right?

[packitin]

deleted

[jimbassett]

You may need to get a cover for your hose to stop the condensation, or turn the HH down a notch. What pressures is your auto set at? Please take a few moments and fill out your profile info so that we can easily see what you are using and perhaps give you better info with your problems. Good Luck and keep at it. jim

[lookin4sleep]

Hey JIm, finally someone from New Mexico! I was starting to feel all alone with all these Texans and East Coasters. Maybe I'll see you at the Balloon Fiesta!

Chris

[jsmythe]

Sounds like you are doing everything right. I have this mask also, it , like the Aura/Headrest is for some reason more prone to "rain-out" or condensation in the hose. If you will obtain, or make yourself, a hose cover, that will help tremendously until you can get a heated hose. Also, by keeping the machine lower than your bed will help very much!! I use the Repti Heater cable with my hose and have been for almost a year now. I have had no problems with it. Best to get the 11.5 ft/15 watt one. Anything hotter will melt your hose. The Aussie hose cover is 15 watts. Here is one link for the Aussie heated hose

http://www.cpapusa.com/search.php?categ ... =accessory

And here is one for the Repti heater cable-

http://www.arcatapet.com/item.cfm?cat=12460

You were lucky to get the Auto right off the bat (so to speak)! I have never used Resmed, only the Remstar Pro, and now the Auto - which took me seems like months to get my doc to give me a script for. And like others will say, to me it is my Dream Machine (until I can use another brand- and see if I like them as well as this one...)

Also by turning down you humidifier a notch will help with some of the water, what equipment do you use? Fill out your profile so that we can better help you.

Sorry!! JimBassett- you beat me to it, I just now saw that..

[packitin]

Thanks so much. I already have moved the machine lower, and I will look into the hose suggestion as soon as possible. And I lowered the humidity setting. Also, where did you get the Encore card reader and USB? I saw on other threads that it is not wise to take the card back for them to get the data, but to print it out and send it to the doc.
Also, I remember that the tech said my pressure range was 4 - 20. Does that sound right?
As far as the machine, I'm still getting used to it. What are the + - buttons for and also the "arrow" keys?
(I'm sorry for such lack of knowledge - I'll get better)
See ya,
Jay

[jules]

You need to get some more feedback on those leg movements.

[Slinky]

Well, yes and no. Its too bad you took that RemStar Pro and gave it back to the local DME supplier after having had it for 2 years. After 2 years it was PAID FOR so that DME supplier got a free used device to use as a loaner or to sell to a company that refurbishes them for about $100. That Pro was a good device as far as providing good therapy had your pressure been set right and would have made a good backup/travel device. But hindsight is better than foresight. Just keep that in mind for the future since xPAP is a lifetime committment.

Second, it would have been a good idea to call your insurance company to ask them what local DME suppliers they are contracted with. You might have been lucky and had the option of more than one. Whilst some Apria offices are pretty good, overall the company has a pretty bad reputation amongst savvy and successful xPAP users.

Third, don't count on being able to keep that Respironics M Series Auto w/C-Flex. The doctor's script could well have been for a limited loaner of an autoPAP and not a permanent order for the auto.

Fourth, since you have already obviously had a previous sleep study and previous titration, that wide open pressure range of 4 to 20 cms wasn't the smartest range setting. It would have been better to set the pressure range 1-2 cms below your previous set pressure and maybe even a limit on the higher pressure somewhat lower than 20 tho the upper pressure range would have been okay at 20 cms.

Fifth, you seem to have significant limb movement arrousals which may or may not reduce or eliminate the limb movements. Most likely the best xPAP can accomplish is the reduce the number. You may well need to consider a medication for the limb movements.

I'm no pro, just a patient, but that's the way I see it. On the other hand, you are still ahead of the game over the majority of xPAP users who blindly follow doctor, sleep lab and local DME supplier provisions. Keep up your learning curves 'cause you aren't doing any so badlyl and certainly better than most.

Good luck!

[6PtStar]

Software and reader available at: https://www.cpap.com/productpage-bundle.php?BundleID=64

Jerry

[packitin]

Thanks to all of you for helping. Yes, I know, Slinky, I was stubborn and impetuous - one of my flaws. I'm getting better.
Fortunately, this new doctor is very cooperative, and is sooo nice. The sleep study tech that night said he was wonderful to work for and had never raised his voice once. This doctor has promised me that he will work with me until I get what is good for me. He even told me that I should play more golf. (I'd never had a doctor prescribe that before.)

I also am wondering why I have so many leg movements. I will ask him about this when I go back in 2 weeks. (I had 134 in 224 minutes of sleeping. This seems to me to be too many.)

But this new machine seems to be fine so far. It's very quiet. If things keep working out, I will probably see if I can keep it. Do you think I should? (just finished the 2nd night) I am getting good sleep, but having a lot of strange nightmares for some reason. (I probably shouldn't have watched the movie "Transformers" on reruns yesterday)

I still don't understand all I need to know about pressure. I will ask about that also.

Thanks again to all of yawl,
Jay

[Slinky]

I've been known to cut my nose off to spite my face more than a few times, myself!

By all means, do your darnedest to KEEP that Respironics M Series Auto w/C-Flex! - UNLESS your sleep doctor should for some reason want you on a bi-level OR you can convince them to upgrade you one more step to the Respironics M Series Auto w/A-Flex. But that auto w/C-Flex is a honey of a device so be happy if you can keep it.

Hey, there's a lot to learn about this CPAPping bit. You'll probably hit "information overload" at some point and it will seem to scramble into one big melting pot from which eventually understanding and comprehension will begin to emerge.

[packitin]

Thank you so much, Slinky, and for your positive attitude. I guess I'm doing o.k., but I don't know. Four nights now. I can't tell that much difference. The machine is fine. I don't know if its what I need or not. I'm too much of a novice. I don't do mouth taping, don't know if I have leaks or not, don't know if I have the right pressure. I don't know how to check the data on the machine. (I don't have any software yet - I'll wait to see if I keep this machine.) I will ask about the A-flex (I don't know what that is, really). Oh my gosh! If this were my math career, I'd still be in Alg. I. I just get in bed at night, put the (Swift LT) on, draw the hose up under my covers, move my dog over out of the way, and hope I'm breathing thru my nose. Then If say a prayer. Friends ask how I'm doing. I just say "o.k. I guess."
See, ya,
Jay

[Slinky]

Eh, you'll do all right, Jay. It just takes time. Very few experience the miracle of instant, overnight success. Some of the Respironics folks can tell you how to access some data via the LCD screen. I opted for the Resmeds for their good therapy AND EASIER ACCESS to data via the LCD and have totally forgotten how to access the Respironics data.

[rested gal]

Jay, if you'll PM me your email address, I'll be glad to send you the Provider manual for your machine.

[Snoredog]

Hello,
I'm just learning about sleep therapy, and have been on the forum for about 2 months. (at the recommendation of the sleep doc). I really value all the knowledge and experience evidenced here.

I used an old Remstar Pro (with no bells and whistles) for 2 years off and on. Could not adjust to it. Last March, I turned it back in to the DME. I realized after a couple of months that I still needed cpap. I was waking up, heart pounding, several times a night and my wife was complaining of my snoring (even in the next bedroom).

I then called a different doctor and had a sleep study done on 8/4/08. Got the results back on Mon. 18th.
slept 224 min. ;6 hypopneas; 15 Obs. Ap.; (longest 27.8 sec); Limb Mov Ar. 134; Snore Ar. 14; Tot Ar. 38; 25 Awakenings

The doctor wrote a prescription for auto pap. I promptly went to the very first DME I could make an appt. with which finally was Apria. I was issued a M Series Auto C-Flex CPAP Machine (the one with the 3 buttons - triangle, on-off and C-flex) The tech there said I would only use the on-off button. Also have a humidifier. They gave me a Swift nasal LT mask. I asked about software. He said they didn't have it, and that I'd have to get it myself, and he did'nt know where I could find it. He said that in 2 weeks, I should bring the card back, they'd send the data to doc. and the doc would call me to come in and talk and we'd take it from there. (The tech seemed to think that this is the machine for me- I had told the doc I wanted to try more than one machine to see which one suited me). Was out in no time; 15 minutes on how to use it. 20 min. on paper work. Home I go.

I used the machine first time last night. Semi-successfull. Probably for about 5 hours, waking up about 3 times for 15 min. I shook out about 2 tablespoons of water from hose each time. However, must have been pretty good sleep, because I feel pretty rested today, although almost nodded off this afternoon.

Do you think I am doing everything right? Is there something else I'm missing?
Thanks for your advice.
Jay

couple things I see here, your obstructive sleep apnea is NOT all that bad. While use of the machine would reduce the apnea and associated arousals attributed to OSA, they MUST be hoping that sleep deprivation will subside with CPAP use and those Limb movements would go AWAY on their own??

I doubt they will, could be why you find NO relief from CPAP treatment in the past. While the Autopap is a good idea to eliminate the OSA portion, determine current pressure needs and confirm data found on the PSG, seen being more severe is the PLMD. For example, take the 224 minutes you slept and divide that by 60 minutes, that is 3.7333333 or there abouts. Keep that 3.73 hr value around,

Now take the 6 hypopnea +15 apnea seen which is 21 and now divide 21 by 3.73 = AHI of 5.6 or near normal. That is your AHI for OSA. Now take those 134 limb movements with associated "arousals", divide those by same 3.73 =35.92 so if you want you can add those together (5.6 +35.92=41.52) so you are now at 40+ per hour in arousals on average. Arousals are what wake you up or disturb your sleep. With CPAP we try and avoid the obstructive event to prevent the "associated arousal", this is in addition to keeping your oxygen levels up to normal.

Sorry, but based upon what I see here, Periodic Limb Movement Disorder (PLMD) is your primary sleep disorder and your doctor needs to acknowledge that before scribbling on the pad, he should have wrote you one not only for the CPAP but for a trial on Requip and/or some other medication to attempt to address those 134 limb movements seen to see if it settles down that limb movement and associated arousal. Now you won't be able to know that without being in the lab connected to the EEG, but your doctor would be looking at you for feedback in any improvement. Why does this matter?

Understand you have Sleep Architecture that reports your sleep efficiency, it should be over >85 percent. Usually shown on your PSG as:

Normal Sleep Architecture:
Stage1: 5%
Stage2: 50%
Stage3: 10%
Stage4: 10%
Stage REM: 25%

Stage3&4, REM decrease as we age.

Now the above is what yours should resemble if on CPAP and/or if things are brought back to Normal. Values seen above are "averages", so you can fluctuate from that and still be in normal range but not far if you are still reporting fatigue. Now for example; if you are not getting ANY REM that 25% seen may be less in your case such as 5% or 10% the sleep time there will show up somewhere else, like at Stage 2: and/or maybe spread over the other non-REM stages, so instead of your Stage 2 being normal at 50% yours may be 60% or higher. If all other Stages are near normal, you can assume your lost REM is now showing up at Stage 2 (if you catch my drift so far). What stage of sleep gets interrupted really depends on where you are when the "arousal" shows up.

One of the goals in treatment is to eliminate the "arousal" by eliminating the event associated with that arousal. In the case of OSA we are trying to eliminate the apnea w/cpap as doing so eliminates the associated arousal therefore if you address everything you can correlate to an "event" like an apnea, limb movement etc. your sleep falls back to normal and hopefully you feel rested.

Now if they cannot during the PSG correlate an arousal seen on the EEG with a event such as listed above, they call those "Spontaneous" arousals an from that point on they hope like hell that getting rid of the sleep deprivation cpap makes them go away. Obviously in your case it doesn't.

SO the bottom line is, most Sleep Specialists only treat the obvious OSA portion, they do nothing on your PLMD, RLS unless you call them to the table on them (most doctors don't know what they are believe it or not) you have to call them on that one if you ever want to find any kind of relief.

So looking at the above data, lets say you had a 27 second apnea, it may create an associated "arousal", they see this arousal on the EEG during your study and score it as such. Same EEG might also show you in REM then after the arousal you are in Stage 2, one can only guess that the arousal from the apnea caused you to transition from REM to Stage 2. Sleep a bit more you might transition to Stage 3, have another arousal you may bounce back to Stage 2 again. Sorta a like a ball in a pin ball machine you can bounce with each arousal to any other Stage of sleep. Sometimes just transitioning from one Stage to REM can cause you to bounce around. The point here is the "arousal" is what destroys your sleep architecture above. With a destroyed Sleep Architecture you will feel fatigued.

Now look at your limb movements denoted on your PSG of 134. That is the number seen over 224 minutes of sleep, or 35 some arousals per out. Well that means every 2 minutes out of every hour of sleep you get on average your sleep architecture is getting disturbed due to a limb movement associated arousal.

We have all seen our dog lay there and "twitch" during sleep, that is pretty much what you are doing but while it may seem harmless, it can destroy your sleep quality and leave you just as tired as if you were having 134 sleep apnea during that same period. While PLMD is less severe than OSA as it doesn't cause a drop to your SAO2 levels like OSA it can leave you just as fatigued.

Now with that many arousals, you can use the CPAP machine till the cows come home and you won't feel any better. IF you want to feel better you go back to that so called sleep specialist and you call them on those limb movements and ask them WHY they are ignoring them. Granted they don't know what causes them, there is no cure for them there IS treatment for them shown to offer improvement such as Requip, Miraplex and other medications. IF they are not going to do anything, at least try some supplemental magnesium.

And YES I agree with you, you should NOT have to tell your doctor how to do their job and what the suggested treatment plan might be, they should volunteer that on their own if they are doing their job. This is the reason it always pays to obtain copies off all your medical tests performed. You put them in a folder and when you fire a quack you show the next one in line what your prior results were without having to repeat all the tests, it saves you in deductibles and having to pay for things two and three times because of inadequate medical care.

Believe it or not, most of these so called specialist only treat obstructive sleep apnea, that is what you see with the machine, get beyond that like with PLMD and you are pretty much on your own.

Understand WHAT is disturbing your sleep, don't allow them to ignore it. I bet PLMD was probably noted on your first PSG and the doctors prior did nothing about it.

That's my opinion.

[jules]

Agree Snoredog - the leg movements are the big problem and I said he needed more feedback on those the other day. Even Slinky mentioned it 5th on her list but I was pretty direct and brief.

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