Having doubts...

[Alshain]

I've been having problems for about 3 years. These symptoms have been ramping up in intensity. They started with dull shin pain, lower arm pain, and dull pain near the scapula. Over the years it has also come to include mild daytime sleepiness (no falling asleep at random), headaches (usually afternoon-evening), nausea, heart palpitations, abdomen pain, very frequent eyelid twitching, esophageal spasms, and back pain. Sometimes I have stabbing pains in various places, usually very short (i.e. gone as fast as it comes, like a spasm), these are infrequent. Also anxiety, usually caused by the symptoms but it just feeds on itself from there. A lot of days I've noticed the symptoms start around 3pm, not always... sometimes earlier, but more often then not 3pm give or take 15 min.

I'm 30 years old, male, and obese 5'9" @ 240lb (down from 270lb 6 months ago and still working on it... or trying to between the 'misery days' which is becoming every day).

I've been cleared of any heart problems, but have been misdiagnosed with everything you can think of. Ok, well not exaggerating, it's actually been back problems, thyroid disorder (retests showed no sign of it), gastrointestinal problems, and now sleep apnea (I feel like I'm forgetting something, that may be another symptom ). I also have bruxism according to my dentist and I wear a mouth guard at night.

When I was diagnosed with apnea, the doctor said I was waking up 22 times (per hour? I think). I'm now using an APAP, a REMStar Pro 2, an older machine a friend had and wasn't using anymore, with a Quattro mask... which I hate btw, but I'm still wearing it. I have been for 2 months every night at pressure setting of 6 (I figured out how to go to config mode and saw it's actually at AFLEX 6 to 20, I didn't change anything except turning off the annoying LED's) and there has been no indication that any of the symptoms are going away. I'm beginning to wonder if this is just another misdiagnosis. Most of the symptoms I can't find any relation to apena except for vague references to Fibromyalgia caused by apnea. Some of the symptoms fit, but not enough, or at least not that I can tell through web research. I've also considered these doctors are just taking my insurance for a ride.

I don't really know why I'm posting all this. I don't even know what to ask. Maybe for some thoughts or suggestions?

I feel miserable and frustrated that this hasn't been found after 3 years. I'm at my wits end, I don't know what to do anymore.

[joeattardi]

I also have the Quattro, and it can be a beast. I found this very helpful article with tips for fitting it better. The mistake most people make (myself included) is that they tighten it too much.

Give it a read, hope it helps!

http://maskarrayed.wordpress.com/taming ... e-quattro/

[Alshain]

Thanks for the response. I have read that article and tried what it suggests, but the problem is, it either leaks around the bridge of the nose or it is too tight. There is no in between, and I've fiddled with it so much that I need new headgear after only 2 months. From what I've read I think it's too big, but the biggest problem is that I can't stand the feel of the forehead brace (I thought about putting moleskin on it, but I wasn't sure if that would damage it's function). Surprisingly, the mask doesn't bother me, but something plastic or rubber pressing (sticky) against my forehead is uncomfortable is irritating to me. I think I want to try the FX or the Liberty.

[joeattardi]

Surprisingly, the mask doesn't bother me, but something plastic or rubber pressing (sticky) against my forehead is uncomfortable is irritating to me

Same here. I hate going around half the day with big red marks on my forehead. Just tell people you had your horns removed but the skin area is still a little tender.

[DoriC]

Welcome Alshain! A few questions, I assume you had a sleep study using a cpap machine. If you were waking 22 times/hr you have moderate sleep apnea. Did you have a 2nd study with a machine and mask? What was your titration, or pressure needed to eliminate apneas? If you have an Apap set at 6-20 that is a very wide range and is fluctuating all night which may be disturbing you. The minimum pressure should be set at or 1-2cms below your titrated pressure. If pressure changes disturb you then the max can be lowered to a narrower range. Can you read any of the data on your LCD screen which should give you at least 7-day and 30-day averages of Pressure, AHI, and Leaks? I'm not a doctor but many of your symptoms could be related to inadequate cpap therapy as documented by many people here. Keep us updated.

[nanwilson]

Hi Guy
For the red mark on your forehead..... go ahead and put a piece of soft cloth or fleece over it. Most of us do it, whatever marks we can eliminate, believe me we have tried every suggestion. In fact if you go to padacheeks.com, Karen is a patient and a member here, she has a mask liner for the quattro that includes the forehead piece. I have one as do many others, give it a try.
Good luck
N

[Alshain]

Yes, I had 2 sleep studies. The first to diagnose and the second to divine treatment. 6 was the perscription. The doc said I slept 45 min without apneas at that pressure and they configured the machine. There are no averages on the LCD. All it tells me is the number of hours used and it config mode the number of days >4 hours use. It has a smart card, I can't read it though... Why can't these companies just use SD like everybody else?

[nanwilson]

To get into the info-----
unplug your machine at the back
press both arrow buttons at the same time as plugging back in
you will hear 2 beeps - when you hear the beeps another screen will pop up.
at the top right of the screen there is an indicator box with what looks like a key- press the arrow button next to it
Your usage, ahi, leak rate will be the next pop-up - now you know basically how you are doing.

[Alshain]

I'll look again when I get home from work. I don't remember seeing that before. Also, I think I said wrong. I have REMStar Auto, not a Pro 2, but I don't think it is the "M series".

EDIT: I don't have any buttons near the top right of my screen. I only have 5 buttons. 2 below the LCD (Left and Right) and two offset from the LCD (Heat/Up and Ramp/Down) and the Start/Stop.

[Pugsy]

Additional Setup Menu Instructions for Various Machines:
Respironics REMstar Auto (older, standard unit, not "M" series, not the PR System One): you can enter the setup menu by holding down the Ramp button and both of the right and left arrow buttons under the display window, while plugging in the CPAP. The 3 buttons must be held down until the setup screen starts. From this link below. See if this help access data or settings.

http://www.apneaboard.com/CPAP%20Adjustment.htm

[Alshain]

What would I need to read the memory card in this thing?

[Pugsy]

What would I need to read the memory card in this thing?

For the older Remstar and the M Series machines we need this card reader. I did poke around yesterday and I think I saw it somewhere else for around $56.

https://www.cpap.com/productpage/Respir ... r-USB.html

You would also need the software.
With your machine you could use EncoreViewer 1.0.
Not sure if the older Remstar machines will work with the newer software. Either EncoreViewer 2.0 or Encore Pro. My M series machine will but not sure about the model you seem to have.

Should you wish to try EncoreViewer 1.0 send me a PM and I will try to help.

Someone else may have to comment on EncoreViewer 2.0 or Pro.

EncoreViewer is the patient version of the software and is easier to manage. The reports are the same. The Pro version is designed for clinics and has a lot of "clinic" and multiple patient stuff.

All are designed to work best on Windows OS. But there are workarounds for other OS and 32 bit vs 64 bit computers.
All work just fine on my Vista 32 bit computer. I have EncoreViewer 1.0 and the older Encore Pro as well as the newer Encore Pro.

[Alshain]

Hmm. Well this is good info. My friend gave me this machine (she got some thing from her dentist she puts in her mouth instead) and I haven't had my insurance buy me a machine. Right now, as mentioned at the beginning of this thread, I'm still skeptical but willing to try treatment. But if I ever get to a point where I'm convinced. I think I might just upgrade the machine. I travel a lot anyway and this thing is huge. If I can talk them into that PR System One APAP, I would pay only slightly more than that card reader out of pocket. That all depends on if they would cover that particular unit though. I'm not really sure I would have to have APAP though, I really don't have any difficulty breathing against it. I didn't at the sleep study either (even when the nurse told me I would at first) and I think that was a CPAP.

[Pugsy]

t willing to try treatment. But if I ever get to a point where I'm convinced. I think I might just upgrade the machine. I travel a lot anyway and this thing is huge. If I can talk them into that PR System One APAP, I would pay only slightly more than that card reader out of pocket. That all depends on if they would cover that particular unit though. I'm not really sure I would have to have APAP though, I really don't have any difficulty breathing against it. I didn't at the sleep study either (even when the nurse told me I would at first) and I think that was a CPAP.

Should you decide to try to get a new machine and your insurance will spring for an APAP, go ahead and get that one. It can be used in straight CPAP mode and should a time come down the road where you might want to see if pressures are doing what they are supposed to do, you can run it in APAP mode. Getting the APAP is like getting 2 machines in one. Depending on how a DME bills it out and your insurance, the APAP shouldn't cost any more out of pocket to you than a CPAP would.

[Alshain]

Depending on how a DME bills it out and your insurance, the APAP shouldn't cost any more out of pocket to you than a CPAP would.

Yeah, if they pay for it I pay 20% on my plan. Based on prices at CPAP.com, it's a difference of $20 for me. I would definitely get the APAP if I can.