Okay, so I went back to my doc and after a bit of reluctance, he prescribed a 1 week Auto CPAP machine loaner. I used it for a couple nights and the first thing I noticed was that I was not feeling "suffocated" as  i do on my CPAP (s8-compact) machine with the same mask and same starting pressure.

So, I'm wondering, is it possible that my own CPAP Machine (s8compact) isn't putting out the 5.0 cm that it claims it is putting out? How would I make sure or know that it is? take back to DME?

Also, I loaned one machine (RemStar Auto M series - Cflex) and after two nights, the sensor went haywire and ramped way up it seemed ... in the middle of the night... enough to freak me out and not use it for the rest of the night and then return it.

I got a second loaner from the DME, they're really nice actually (expensive but nice), and this one doesn't show any progress at all (on the built in screen as I can't read the card ) . After 3 nights of usage, it still shows less than 1 hour of usage, and this makes me wonder if I should trust the other numbers on it ... like the 90% pressure or the leakage rate (44.4l/hr) etc?

Question is: Do/should/ought the on-screen numbers correspond with data being recorded on the smart card?

why wouldn't it be showing the nightly usage (9+ so far) on the LCD?

Am I wasting my time sleeping with this thing on, when it isn't even recording anything? the DME said keep using it... but I'm wondering if it isn't recording anything, what is the point? My doc probably will tell me to keep using the "prescribed" pressure although I think the titration it is based off of was totally wrong.

As far as your current CPAP is concerned there are devices that you can buy to test if it's putting out the correct amount of pressure, but to the best of my knowledge there not cheap. However I would think that your DME would have a way to test it. If you think it may be a problem see if they will do it for you.

I have never used your particular brand of machine, so I can't be much help on that. I use a RemStar Auto M series - Aflex. I see you have tried that model, but I'm not sure what you mean by the sensor going haywire and ramping way up. I would think it was adjusting to your needs? On the RemStar the "AFlex" is more of a comfort feature.

Quote:

Okay, so I went back to my doc and after a bit of reluctance, he prescribed a 1 week Auto CPAP machine loaner. I used it for a couple nights and the first thing I noticed was that I was not feeling "suffocated" as i do on my CPAP (s8-compact) machine with the same mask and same starting pressure.

What brand was that? And if it worked for you will they let you swap?

Quote:

Question is: Do/should/ought the on-screen numbers correspond with data being recorded on the smart card

In theory one would think they should. My LCD screen isn't always up to date, but have had no problem with the smartcard when I have taken it in to my DME to be read.

Quote:

Am I wasting my time sleeping with this thing on, when it isn't even recording anything? the DME said keep using it... but I'm wondering if it isn't recording anything, what is the point?

The point is that it is giving you the treatment you need.

Getting the LCD screen to work right can be a major pain in the arse, mine seems to update whenever it feels like, but I'm not going to sweat the small stuff. The most important thing is that your using it. If you really think that the machine is not working properly, then insist that it needs to be tested.

Hope you can get this resolved.

Jen

It is really good to know that the LCD screen doesn't always agree with the acutal readings. I did not know that and ended up returning the machine in frustration.

I do understand that it is the therapy that is important and that is also my "quest" shall we say :)

[edit: this turned into a bit of a rant ]

I should have provided the background on the importance of the readings (to me) and why I'm getting paranoid they're not correct because the machine may not be working. When I went for my titration, I had no idea what was going on, hadn't read any of the boards and the "technician" didn't bother telling me anything either. So here I was hooked up to this machine with a SWIFT-LT nasal pillow mask up my nose and my mouth wide open all night.

I find out later that it is not such a good thing to have your mouth open during the therapy because you won't get much of it.

My doctor gave me a very vague results report which did not mention any pressures and any AHI readings, any blood saturations and just said something to the effect of " we feel that the pressure should be set to 7"

Now, my first sleep clinic report had put me at 24AHI with 88% oxygen levels (Moderate OSA). At that time they had prescribed a pressure of 6. after the 2nd song and dance and not much results "titration", I got bumped up to 7.

I still feel horrible. I still wake up with severe headaches and brainfog and half the time I end up yanking the mask off my face because I think I feel like I'm suffocating.

I suspected lower than necessary pressure. But my doc (or his secretary) don't think that is the problem and think that I should stick with whatever they came up with. Their level of interest in their patients makes me want to go the extra mile because personally, I don't think they give a RATS behind. I can't wait 1 year to go back to him without much improvement in my condition, now that I know what is wrong with me.

So, in lieu of another titration which our OHIP won't cover, I figured I could get one of those loaner Auto Remstar machines and see if it could give me a more accurate reading given that I wouldn't be in an alien environment with wires (barely) stuck to me and the "technicians" having arguments over long distance phone calls to somewhere in eastern europe around 2 in the morning. (such a professional system OHIP is running).

So I convinced him to write me a prescription, and the deal was that I'd use the machine and after a week (usually it is 2 weeks) he will interpret the pressure. I know he is already rearing to say he was right, and if the machine keeps acting up and doesn't give accurate readings, he would basically say, I was right, we're going with the s%*(^# diagnosis I already did based on the "titraton" study.

basically, I'm getting horrible, callous, indifferent treatment from our "healthcare system" and I'm just not liking it so much and trying to fight it. One of the ways is by making sure the machine takes accurate readings, but it's a catch 22. I have to go back to the stupid DME to find out if the machine is working or not and they can never seem to get their stuff working and give you blank stares if you ask them whether the LCD not registering the total hours of sleep is normal or not.

Sorry for the rant. The way I've been bounced around between the GP , the lab, the DME, the GP, the LAB and the "specialist" is just plain awful and speaks volumes of how broken, indifferent and callous our health-care system is. And to add insult to injury, they keep thanking each other for "referring the patient to them". GRRRRRRRRRRRRRRRRRRRRRRR  

The DME could have simply told me that it's a bug and I could have kept using the machine but they're as clueless as myself and that does not give me a warm fuzzy feeling of confidence that I should get with a bunch of "experts".

I can totally see now, how people just plain quit dealing with this BS and prefer misery of OSA over this ridiculous "care" that they supposedly get with horribly manufactured machines, extremely overpriced pieces of plastic that don't fit and hardly ever work, with the horrible attitudes of the DME and the "health care professionals"... I can totally see how someone would just say screw this! I'd rather have a heart attack.

I understand your frustration. Did you ever get your printed report? It should be about 5-7 pages long. If not request it.

If you feel your not getting adequate care you may want to shop for a different doctor.  When I moved to a different area a while back I set up interviews with different doctors.

These were not appointments in the regular sense that they obtained a fee for my visit, but an interview to see if I wanted to "hire" them for my
physician. Any doctor who could not or would not agree to give me 10 or 15 minutes of their time, I crossed off my list. It can be time consuming, but in the end it's worth it. No one should have to endure poor service, especially when it concerns your well-being.

Jen

My theory is that my symptoms are more important than any CPAP readings.

Am I remembering my dreams? - this indicates I am getting into REM sleep.

Do I feel tired or NEED a nap mid afternoon? - do I have Excessive Daytime Sleepiness (EDS)

Do I wake up with a whoper headache?

Am I having bloated stomach (aerphygia)? - then my pressure might be too high

Basically do I have the symtoms I had before I started CPAP treatment.

Been on a CPAP since 2002 and have had several changes in pressure, a burned out CPAP motor, 3 changes of DME and resulting changes in CPAP machine.

Yes, it can be frustrating.   Remember.. that DME sells all kind of other equipment besides CPAP machines. So expecting your DME to be a sleep apnea expert can be a bit much to expect. Thats where OSA support groups like ASAA come in.

Sometimes you need to "push back" a little to get the information you need. For me the trick has been to be polite professional but firm.

Good Luck.

Bob


_________________
Just a truck driver with sleep apnea

Your DME should measure your actual pressure vs. displayed pressure for you at no charge.   A manometer is the instrument that is used to measure CPAP pressure; they are quite simple devices and if you are handy a water manometer can be built fairly easily, but they are relatively expensive to buy ($50-$60-$350).  

There are instructions available online for building a manometer.  Many of the DIY manometers described online are designed for measuring pressure in a camper LP gas system and are calibrated in inches of water, but you would want to calibrate yours in centimeters.  5 cmh2o causes a column of water to raise 5 centimeters.  At its simplest, you would only need to calibrate one point, which is your set pressure.  A general use CPAP manometer would be calibrated from 4 cm to 20 cm.

Milestogo,

I'm so sorry that you've had such a hard time getting things set up correctly.  I'd like to offer a few thoughts that, hopefully, will help if this problem is still ongoing.

First, CPAP setting of 5 cm H2O is quite low, and is not surprising that you feel like you're suffocating when asleep.  My guess is that your CPAP titration study was not adequate if you had your mouth open all night.  Even at a pressure of 6-7 cm H2O, you might not be titrated high enough.  If they are unable to make a determination from your previous study, you might need to have it repeated (I know, not a thrilling prospect).  The auto-titrating CPAP (aPAP) can be an alternative to repeating the sleep study, if you have no contraindications.

Something to keep in mind, CPAPs and aPAPs are electronic machines.  As with any other electronic equipment, they can malfunction.  If your DME company is good, they should be able to determine if it is a machine malfunction that is contributing to your problems.  Certainly the data not being recorded on the smartcard is a machine or a smartcard error.  Sounds like your DME is not very familiar with sleep equipment.  There are DME's that deal only with sleep equipment, and should be much more knowledgeable about the CPAPs as a result.  Also, the DME should be able to measure your CPAP pressure with a manometer.  I would not waste the money to buy one yourself.  If there is a machine malfunction, the machine should be replaced.

Something else to consider... GP's typically do not have much training in sleep.  You might consider asking to be referred to a sleep specialist who has special training in sleep as well as handling the CPAPs, etc.  A specialist might be better equipped to to help work through the problems that you have been having!

Best of luck!