I Hate My CPAP!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Suddenly Worn Out
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Re: I Hate My CPAP!

Post by Suddenly Worn Out » Fri Sep 14, 2012 12:09 pm

I understand your frustration. I hope you have a competent, professional respiratory focused DME as I had when I originally started CPAP in 2007. That made a HUGE difference! So much of adjusting to CPAP is the mask. If that is not right, CPAP just wont work. I was lucky to have very sleep apnea focused respiratory therapists who sized me correctly for Resmed masks (I think the Resmed masks are the best btw) and when it was determined I needed a full face mask, that was dealt with immediately.

That made all the difference.

The first month on CPAP is an adjustment period. I experienced "activation" during that month, pressure sores and blisters, fear of the unknown. But my sleep was getting deeper, the night sweats stopped, the tossing and turning in my sleep stopped, my GERD got better, my mood improved some, my breathing became less labored and a bunch of other positive stuff happened I had complained about for years to other doctors.

I hope you are able to stay on your Resmed gear and work it out. If you feel you are not getting the equipment support you need, I see you are in the RDU area. I can give you the name of an excellent DME in the Charlotte, NC area that I used if you PM me. I have no relationship to them other than they were my original DME and I to this day, credit my successful transition to CPAP to that DME. I admit I was highly motivated to get on the CPAP, that played a part. But the DME support is absolutely critical.

All of the DMEs Ive used since I was forced to leave that first Charlotte based DME (due to insurance changes), have been subpar. The general purpose DMEs oftentimes suck. I would say the company that sponsors this forum has been the second most helpful to me after my first DME that I used from 2007 thru 2008.

Good luck to you.

Remember: Half the battle is the mask!

Eric

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Also own a PR System One APAP with humidifier and a Resmed S9 APAP with H5i humidifier

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Suddenly Worn Out
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Re: I Hate My CPAP!

Post by Suddenly Worn Out » Fri Sep 14, 2012 12:22 pm

I used the Resmed S9 Autoset APAP for a while. Good machine. I found the "Climate control" hoses to be a PITA. I went back to plain old regular Resmed slimline hoses, and you can prevent the rainout by getting a Resmed hose cover (very inexpensive). I never get rainout UNLESS I remove the hose cover. Then the rainout comes back in spades.

I found the Climate control hoses were difficult to adjust the humidity and too complicated for me. Again, I prefer the plain old Resmed S9 Slimline hoses made specifically for the S9. They are expensive hoses and I found they break more frequently than regular CPAP hoses, but I am a fanatic about using my APAP so I live with that. And replace them about once a month when I use an S9.

I found as far as the FFM Quatto, it handles jaw drop the best of any FFM I have tried. I swear by it. It is not the most comfortable mask in the world I totally admit but it works well.

To get mine to fit properly, I spent about two hours one night watching the Resmed Quattro videos and reading the Quattro instructions. Then playing with the straps, tightening them just so, using the mask fit feature of my APAP with it until it would read "excellent" with regards to fit. I also found that I was dialing the nose bridge down too far initially and a cool sleep doctor in Charlotte pointed that out to me one time and told me to back off three turns to allow the cushion at the bridge of my nose to expand and pop out some. If you cinch the nose bridge dial down too tight, you will get nose bridge pressure sores. And it will also take pressure off the chin area of the mask, increasing leaks in the chin area of the Quattro.

I admit I use the Quattro pretty cinched down and have a low leak rate. The area I dont cinch it down tight is the nose bridge dial. About three turns there. For you, obviously it will be different.

Find a respiratory oriented DME to get you adjusted, I cannot emphasize that enough. Some of these RTs are not good, a few are excellent, some are in between.

Eric

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Also own a PR System One APAP with humidifier and a Resmed S9 APAP with H5i humidifier

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Drowsy Dancer
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Re: I Hate My CPAP!

Post by Drowsy Dancer » Fri Sep 14, 2012 12:40 pm

The hose covers from Pad-a-Cheek are great. They have a side zipper so you can take the tube out easily to rinse it from time to time if you're so inclined.

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Tino2You
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Re: I Hate My CPAP!

Post by Tino2You » Fri Sep 14, 2012 12:47 pm

Julie wrote:Do not try hard to sleep on your back - even with Cpap - it's the position so many jump through hoops to avoid because it provokes more apneas than anything.
I second Julie's comment. When I am on my back my pressure is in the 15ml range. On my side I can get by with 9ml. Doesn't sound like a lot but it feels it to me.

I was one of the lucky ones (sorry Xena) that felt positive effects after a few days. That is a few days *after* I resolved my leak issues. In my case I found that even with my deviated septum and sinuses that always seem to be clogged, I actually could use a nasal pillow mask (IMHO the least restrictive mask on the markey...IMHO)

Please don't get discouraged. If you feel the need come in here and vent. We will listen and if you like make suggestions. We are all in the same boat and there are more coming on board every day. Work your issues one at a time and try to remember it is a journey not a destination.
-tino

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Tino

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KEQ5
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Re: I Hate My CPAP!

Post by KEQ5 » Fri Sep 14, 2012 1:42 pm

I slept on my back with the Quattro FX mask for the first month or so of treatment, pressure was up in the 11-13 range (95% number was 13.5). After issues with sciatica being aggravated when I was on my back, I had to switch to the Mirage Quattro mask and sleep on my side. And I only need a pressure of 9-11 in that position.

The QFX mask is nice, but it was too easy for it to be pushed up by the pillow and leak between the eyes.

I'm a all sides sleeper (back, side, stomach) and finding a mask that I could trust not to leak was a big improvement in how I viewed the machine. The tiny leaks on the QFX were making me dread it a bit, but I'm perfectly at ease with the Mirage Quattro.

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kaiasgram
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Re: I Hate My CPAP!

Post by kaiasgram » Fri Sep 14, 2012 2:10 pm

Drowsy Dancer wrote:My observation from reading a lot of these threads, plus my own experience, is that it really takes many people a while to adjust. For some people, it's the discomfort from the air. For others, like you, it's mask issues. The issue that took me the longest to resolve, after finding a mask that didn't create open sores on my face, was horrendous stiff necks. I think I was tensing up because I was so afraid of knocking the mask out of place. It took me a while to relax.
Drowsy, this is the first time I've seen "horrendous stiff neck" mentioned, and I really appreciate that you did -- I'm now in serious pain, three months into PAP therapy. In addition to tensing up like you described, I think using a chinstrap has also contributed to the problem as I have jaw pain too. My primary won't prescribe a muscle relaxant because she's afraid it will worsen my OSA -- I'm not hell bent on using more meds anyway, but do you mind sharing any solutions you found along the way? I'm trying icing, heating, talking to myself as I go to sleep about relaxing my neck, and I'm trying to find a good massage therapist. Also I'm trying to do some stretching. Thanks for any suggestions.

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archangle
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Re: I Hate My CPAP!

Post by archangle » Fri Sep 14, 2012 3:36 pm

Is there a specific reason you're using a full face mask(FFM)? Lots of lazy and incompetent DMEs give them to everyone, but you should only get a FFM if you have mouth leaks or other problems with nasal masks.

Some people need FFMs, but they should never be the first choice.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Also SleepyHead, PRS1 Auto, Respironics Auto M series, Legacy Auto, and Legacy Plus
Please enter your equipment in your profile so we can help you.
Click here for information on the most common alternative to CPAP.
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ValShotz
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Re: I Hate My CPAP!

Post by ValShotz » Fri Sep 14, 2012 7:24 pm

First of all, I want to say thank you all for your advice and support. When I came here this evening to read, I was so excited to see that there are many of you who have gone through the same or similar situations to the one I'm in, and I can't tell you all how much I appreciate each of your replies. If I could give you all individually a big hug, I totally would! As much as I hate that you guys have suffered through it also, I am grateful for your willingness to share your experiences with me.

Here are some answers to a few things I focused in on. Again, I'm really sorry that this is long-winded. I have a tendency to babble, so if it ever gets annoying, please don't be afraid to tell me to dial it back a bit!

Julie wrote:Have you tried a Pap pillow (for side sleeping)?
I have not tried one of these yet, but I've seen them online, which is what prompted me to add the additional pillow that lies lengthwise. I figured I might be able to fix a pillow situation that would work in a similar manner as the CPAP pillows, and my doctor suggested that those pillows might be useful when I saw him last Tuesday. I didn't know you could buy these at Bed, Bath and Beyond! Thanks for that! I had looked at them on Amazon.com and wasn't happy with the price, so getting them from B3 might be the better way to go since they are always sending out coupons. Julie, your idea of cutting into the mattress is pretty awesome!

LSAT wrote:Regarding the Quattro leaks...go to padacheek.com and check out the Quattro anti-leak strap and /or the mask liner. There are also CPAP pillows that do what you are attempting to do with your pillows. Don't give up.
retrodave15 wrote:I use the same mack, but a different machine. As my wife tells me I am a all over the bed sleeper so I use:
a cpap pillow (bought from bed bath and beyond online and used a coupon i got in the mail)
a Homemade hose manager like https://www.cpap.com/productpage/pursle ... ystem.html
a padacheek mask liner

With this everything moves with me. I am almost at the 1 year mark, and the adjustment takes time so hang in there!
sleeptimeinNY wrote:The best thing I did was get a padacheek liner. They are soft and very easy to clean and dry very quickly. Next I might look into the padacheek anti-leak strap.
Thanks for that website! I did take a look at the strap and liner mentioned, and I think I might invest in both of them. If they turn out not to work out for me, at least I haven't spent much money.

Drowsy Dancer wrote:Sigh. Both these people, with the best of intentions, created an expectation in you that is not causing problems. They probably didn't want to discourage you by telling you that it could take a while.
I'm glad you said that. I was wondering what it was that I was doing wrong, while everyone else (which isn't many people) I've communicated with seemed to have no problem adjusting at all. I guess it really is just a matter of finding your groove.

Drowsy Dancer wrote:Have you gotten the software yet to read your own data? I found it encouraging to see my numbers improving over time and not just rely on atta-girls from my doctor.
No, I haven't gotten any software to read my own data, and to tell you the truth, I was a little afraid to do that because I might slip up and accidentally erase the information that I'm supposed to give to the doctor. Since several of you have mentioned it in other posts, I guess it is safe to use, and obviously pretty informative. Does anyone have a suggestion as to which software would be the best to use? I did ask my doctor about it, but he said (as I'm sure he's trained to do so nobody else can do the job he does) that the information wouldn't make sense to me if I'm not trained to read it, and that everything the SD card contains can be shown on my machine display. I didn't believe it, but I also figured it's best not to mess with the data so I don't accidentally violate any terms of my insurance, but if you guys have done it, I'm game. Let me know which software is best and I'll check it out.

chunkyfrog wrote:As a tummy sleeper, you might want to try a Sleepweaver élan or Advance.
These fabric masks offer the best comfort for stomach sleepers and pillow snugglers.
They are a little fussier learning how to make them fit with acceptable leak rates,
but once I had it figured out, hard plastic feels so WRONG.
cherylgrrl wrote:I would heartily endorse chunkyfrog's suggestion of the SleepWeaver masks -- especially since you can try them for 30 days with a money-back guarantee from the manufacturer. They are soft cloth, so you can lie on them almost anyway you want and they just "smoosh" to accommodate the position of your face on the pillow. My other favorites are the Bella Loops (just 2 nights with it, but so far it's the best nasal pillow mask I've tried) and the Quattro FX for Her full face mask.
Oh, cool, I didn't even know that there were soft masks out there! I will definitely have to look into those. That sounds waaaay more comfortable than any plastic option.

cherylgrrl wrote:During my first month or so, I took Ambien every night and that helped tremendously. If you haven't tried a sleep aid, you might want to discuss that with your doctor. Mine recommended it highly and gave me a 3-month prescription. Unless you have a humongo mask leak, it's better to sleep through!
I might have to do that. I only take melatonin at night, and I've only taken Edluar (which, I believe, is a derivitive of Ambien) for my second sleep study the one time. It worked out well for me, but when my primary physician offered to write me a prescription for it while I got used to my machine, I declined because I naively thought I'd be able to work it out with just melatonin to help me get drowsy. I think when I go to see her later in the month, I will ask her for a script. I can see now that it would definitely help. Thank you for that suggestion!

archangle wrote:Is there a specific reason you're using a full face mask(FFM)? Lots of lazy and incompetent DMEs give them to everyone, but you should only get a FFM if you have mouth leaks or other problems with nasal masks.
I'm not exactly sure what the reason was that they issued me the FF mask. When I did my sleep study to set the titration, I took the Edluar tablet I mentioned above to help me fall and stay asleep, and they originally fitted me with a nose mask (not the nasal pillow kind). I slept five hours with that on, then I woke up having to use the restroom, and when I fell back to sleep after that, I was unable to get comfortable in the nose mask because my mouth would fall open and I would choke from the air going through my nose and out my mouth. The sleep tech switched me to a FFM, and then for the next hour and a half or so, I slept (fitfully) with that on. Then when I got set up with my equipment from Lincare (the respiratory company), the woman showed up with two FFMs for me to try. I have no idea how they determined that it was the appropriate mask for me. I have a bit of a chronic stuffy nose, but it's not so bad that I couldn't do well with a nose mask, but I do drool and mouth-breathe a lot at night, and maybe they were able to pick up on that during my sleep study.



As you guys can see, I'm really quite clueless about all of this stuff! I had thought I'd educated myself pretty well between all the reading of sleep apnea-geared boards, blogs, sleep center websites and all of that, but apparently there is so much more to this than I'd ever imagined. It's almost embarrassing that I didn't explore this as much as I thought I had! I can't thank you guys enough for your advice and support. It's such a nice, friendly community here, and I look forward to interacting with and learning from all of you. Thank you so much!

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cherylgrrl
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Re: I Hate My CPAP!

Post by cherylgrrl » Fri Sep 14, 2012 7:39 pm

I have a bit of a chronic stuffy nose
Yup, me too. I marched into my sleep test and declared that I would have to have a full face mask because of this. Then I decided to try the SleepWeaver nasal mask and ordered a chin strap to use with it because I firmly believed I couldn't sleep without my mouth being open. The SleepWeaver came before the chin strap did, so I thought I'd give it a try. The results were my best AHI number to date! I have talked to some people who think that the experience of stopping breathing with sleep apnea, then starting to breathe again with a big gasp of air (think resurfacing after a dive down to the bottom of the pool) might cause the dry mouth/throat and resultant nasal congestion. I've had great results with a couple of different nasal masks, even though the sleep tech told me after each of my sleep tests that I could never use a nasal mask.

What happens during the sleep test is not necessarily going to be the same as when you are sleeping in your own bed, after developing a new routine with the mask and machine. Don't assume anything until you've tried it!

And yes, you should get software and start monitoring your progress. Downloading the chip data doesn't erase it from the chip. I use SleepyHead because it's free and simple. I also got a free copy of the professional ResMed software, but I like SleepyHead better! You can download it here: http://sourceforge.net/projects/sleepyhead/
There is so much more you can do when you know what is happening night by night! I would never have stayed compliant for 3 months without the software to demonstrate my progress, and help me fine tune things.

This is a great forum, I've gotten so much help here and am in awe of how much some of the "regulars" know about xPAP therapy. It's a complex subject, and unfortunately many (if not most) of us have received far too little help from our doctors and DMEs. So keep posting, keep asking questions, and don't give up! The many success stories you can read about attest that you can figure it out, overcome the obstacles, and get healthy!

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Mask: SleepWeaver Advance Nasal CPAP Mask with Improved Zzzephyr Seal
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Sloop
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Re: I Hate My CPAP!

Post by Sloop » Fri Sep 14, 2012 8:13 pm

ValShotz wrote:
cherylgrrl wrote:During my first month or so, I took Ambien every night and that helped tremendously. If you haven't tried a sleep aid, you might want to discuss that with your doctor. Mine recommended it highly and gave me a 3-month prescription. Unless you have a humongo mask leak, it's better to sleep through!
I might have to do that. I only take melatonin at night, and I've only taken Edluar (which, I believe, is a derivitive of Ambien) for my second sleep study the one time. It worked out well for me, but when my primary physician offered to write me a prescription for it while I got used to my machine, I declined because I naively thought I'd be able to work it out with just melatonin to help me get drowsy. I think when I go to see her later in the month, I will ask her for a script. I can see now that it would definitely help. Thank you for that suggestion!
AMBIEN -- it is extremely dangerous. Do your research. Doctors, for some stupid reason, are prescribing this stuff like it is candy. Ambien almost killed my wife a year ago. It has a tendency to put you so deeply under, that you wouldn't wake up if a bomb went off. That is what happened to her and the short story is she vomited in her sleep from some tainted food, did NOT wake up, and ended up with aspiration pneumonia and septic shock. She was in a coma for 6 days, and spent a total of 10 days in CCU. Took her 3 months to return to normal. The Ambein went in the toilet, NEVER to grace our house again. She is using sublingual Melatonin (like I use) and does just fine getting to sleep and sleeping all night.
Leading up to that crisis, she also had multiple episodes of the sleep-walking stuff that Ambien is known for. One night she was in the kitchen cooking bacon and the frying pan was on fire and could have easily burned the house down if I hadn't -- for some reason - gone in there.
Now, you are going to hear a whole bunch of rebuttals from people who think I am an alarmist -- so be it, but DO YOUR RESEARCH before starting on that dangerous drug.

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Suddenly Worn Out
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Re: I Hate My CPAP!

Post by Suddenly Worn Out » Fri Sep 14, 2012 9:26 pm

Um, IMO that is quite the fear mongering. Ambien is a very effective drug, it does not affect slow wave nor REM sleep much. It is prescribed by some sleep medicine doctors the night of a sleep study because some people are excited or "hyped" about getting a sleep study. In my case, I was looking forward to it so much I could not sleep that night. Without Ambien or a similar hypnotic, my time at the sleep lab would have been a waste of time and money.

As far as using Ambien on a chronic basis, it can lead to a form of mild dependence. It does have some mild physical addiction potential but nothing like the benzos such as xanax, klonopin or valium. Ambien, sonata and other FDA approved insomnia drugs are clean drugs when if used properly, help people with minimal side effects. And you have to take it for an awful long time to get physically addicted to it and even then its not like getting addicted to benzos.

Eric
Sloop wrote:
ValShotz wrote:
cherylgrrl wrote:During my first month or so, I took Ambien every night and that helped tremendously. If you haven't tried a sleep aid, you might want to discuss that with your doctor. Mine recommended it highly and gave me a 3-month prescription. Unless you have a humongo mask leak, it's better to sleep through!
I might have to do that. I only take melatonin at night, and I've only taken Edluar (which, I believe, is a derivitive of Ambien) for my second sleep study the one time. It worked out well for me, but when my primary physician offered to write me a prescription for it while I got used to my machine, I declined because I naively thought I'd be able to work it out with just melatonin to help me get drowsy. I think when I go to see her later in the month, I will ask her for a script. I can see now that it would definitely help. Thank you for that suggestion!
AMBIEN -- it is extremely dangerous. Do your research. Doctors, for some stupid reason, are prescribing this stuff like it is candy. Ambien almost killed my wife a year ago. It has a tendency to put you so deeply under, that you wouldn't wake up if a bomb went off. .

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Also own a PR System One APAP with humidifier and a Resmed S9 APAP with H5i humidifier

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archangle
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Re: I Hate My CPAP!

Post by archangle » Fri Sep 14, 2012 10:52 pm

ValShotz wrote:
archangle wrote:Is there a specific reason you're using a full face mask(FFM)? Lots of lazy and incompetent DMEs give them to everyone, but you should only get a FFM if you have mouth leaks or other problems with nasal masks.
I'm not exactly sure what the reason was that they issued me the FF mask. When I did my sleep study to set the titration, I took the Edluar tablet I mentioned above to help me fall and stay asleep, and they originally fitted me with a nose mask (not the nasal pillow kind). I slept five hours with that on, then I woke up having to use the restroom, and when I fell back to sleep after that, I was unable to get comfortable in the nose mask because my mouth would fall open and I would choke from the air going through my nose and out my mouth. The sleep tech switched me to a FFM, and then for the next hour and a half or so, I slept (fitfully) with that on. Then when I got set up with my equipment from Lincare (the respiratory company), the woman showed up with two FFMs for me to try. I have no idea how they determined that it was the appropriate mask for me. I have a bit of a chronic stuffy nose, but it's not so bad that I couldn't do well with a nose mask, but I do drool and mouth-breathe a lot at night, and maybe they were able to pick up on that during my sleep study.
Sounds like the typical DME "dispense what's good for us, not what's good for the patient" attitude, but if you have a problem with mouth breathing, you may really need a FFM. Your doctor may have specified a FFM.

Trying a nasal mask may help with some of your leak problems, but you may have to solve mouth leak problems. Many people use a chin strap to keep their mouth closed, but that doesn't always work.

You may need to try some other masks.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Also SleepyHead, PRS1 Auto, Respironics Auto M series, Legacy Auto, and Legacy Plus
Please enter your equipment in your profile so we can help you.
Click here for information on the most common alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check for yourself.

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zoocrewphoto
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Re: I Hate My CPAP!

Post by zoocrewphoto » Sat Sep 15, 2012 1:53 am

No, I haven't gotten any software to read my own data, and to tell you the truth, I was a little afraid to do that because I might slip up and accidentally erase the information that I'm supposed to give to the doctor. Since several of you have mentioned it in other posts, I guess it is safe to use, and obviously pretty informative. Does anyone have a suggestion as to which software would be the best to use? I did ask my doctor about it, but he said (as I'm sure he's trained to do so nobody else can do the job he does) that the information wouldn't make sense to me if I'm not trained to read it, and that everything the SD card contains can be shown on my machine display. I didn't believe it, but I also figured it's best not to mess with the data so I don't accidentally violate any terms of my insurance, but if you guys have done it, I'm game. Let me know which software is best and I'll check it out.
You can use ResScan or Sleepyhead. I prefer ResScan. You can see a LOT more data than what it is on the LCD screen.

Also, you can copy your sd card any time you want. During the compliance phase, I would make a new copy every time I took the card out of the machine. That way, if I did accidentally delete it, I would have a backup copy. Also, when you look at the data on your computer, you can save it in that program as well. So, you would have another backup of information.

_________________
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Who would have thought it would be this challenging to sleep and breathe at the same time?

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kaiasgram
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Re: I Hate My CPAP!

Post by kaiasgram » Sat Sep 15, 2012 2:29 am

zoocrewphoto wrote:
I did ask my doctor about it, but he said that the information wouldn't make sense to me if I'm not trained to read it, and that everything the SD card contains can be shown on my machine display.
Not true -- software like ResScan and SleepyHead (which is sometimes easier for newbies) can show you a lot more detailed information than what you see on your machine's display panel. With the S9 it would be pretty hard to erase the data on your SD card just from popping it into your computer and pulling the data into a file to view. I've been using SleepyHead and it's really nice because ALL my data since starting PAP is now in on my computer in SleepyHead, but has never disappeared from my S9's data card. People here will help walk you through the steps of installing the software and pulling your data from the card without erasing it from the card. It'll be fine.

And believe it or not you can be TRAINED (oh brother ) to read and understand what you'll see in your sleep data!

_________________
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Sloop
Posts: 327
Joined: Fri Jun 22, 2012 1:56 pm
Location: Richmond, VA

Re: I Hate My CPAP!

Post by Sloop » Sat Sep 15, 2012 8:09 am

Suddenly Worn Out wrote:Um, IMO that is quite the fear mongering. Ambien is a very effective drug,
Caveat Emptor

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Mask: Mirage™ SoftGel Nasal CPAP Mask with Headgear
Additional Comments: Battery Back-up: http://www.cloreautomotive.com/sku.php?id=244, and PR 12 volt dc pwr cord
................21+ years of restorative, apnea-free sleep.