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99 replied to 99's discussion Five Day Cure obstructI've sleep apnea
"hi rock how are you"
Aug 10
RockRpsgt replied to 99's discussion Five Day Cure obstructI've sleep apnea
"Hello, 99"
Aug 10
Maggie Buehler updated their profile
Apr 18
ZolliStar replied to Dan Lyons's discussion CPAP & Dry Mouth
"Dan, Do you use a chin strap?  If you're a mouth breather, you may need a chin strap so that your mouth stays closed. It's important to keep it closed throughout the night for a lot of reasons -- mouth, dental, etc., etc. I've…"
Nov 24, 2016
99 replied to 99's discussion Five Day Cure obstructI've sleep apnea
"Wed 9  9 mg Thursday 10 missed  Friday 11 9mg have insomnia  going skip rest until insomnia goes away Just did maths had my five days"
Nov 11, 2016
99 replied to 99's discussion Five Day Cure obstructI've sleep apnea
"Day after tomorrow I mean trump day wed 9 9mg "
Nov 9, 2016
99 replied to 99's discussion Five Day Cure obstructI've sleep apnea
"Day two Monday 7 Nov 9mg very relaxed Day three Tuesday 8 Nov 9mg sniffles appears to have stopped  must reduce dose"
Nov 8, 2016
99 replied to 99's discussion Five Day Cure obstructI've sleep apnea
"Start treatment again  Nov 6 @ 2100 first day"
Nov 6, 2016
99 replied to 99's discussion Five Day Cure obstructI've sleep apnea
"Day 5 not quite there must quit treetment for non and have at least a five day break But even so my health has improved "
Nov 1, 2016
99 replied to 99's discussion Five Day Cure obstructI've sleep apnea
Nov 1, 2016
99 replied to 99's discussion Five Day Cure obstructI've sleep apnea
"Day three not so good with osa  DAY four better but still not quite there "
Oct 31, 2016
99 replied to 99's discussion Five Day Cure
"Day one immediate improvement to OSA but had insomnia and slight constapation Day two flatulence greatly reduced muscle tighten"
Oct 29, 2016
99 posted a discussion

Five Day Cure

I believe I have found a cure that only take five days which I am trialing now It has many benificial side effects as well by reducing snoring to name onePM ME as I do not want mainstream media to find out and have it banned as I fear that is how it will goWill try again after a little breakIn addition will increase omega 3And thirdly a chiropractic to realign atlas bone in spine is just a passing thought See More
Oct 28, 2016
liz4cps commented on liz4cps's group Prince William Co, VA support group
"BluePoint Medical* holding their next Remedy event on June 4 with Terry Cralle, RN on "Sleep in the Mordern Family".  They will also be checking CPAP machines and providing breakfast. Click on link above for more…"
May 7, 2016
Dan Lyons posted a discussion

CPAP & Dry Mouth

In recent months, I have developed extreme dry mouth as a result of the CPAP.  I am a mouth breather when using CPAP.Recently, I saw an advertisement for the symptoms of dry mouth, but as usual, when I need the information to have a discussion with both my primary care  physician and my dentist I haven't seen the ad. Has anyone else seen the ad and can anyone remember the info in the ad?Thanks in advance,DanSee More
Mar 30, 2016
richard graham posted a status
"My deductible is double what a machine is online but I can't get the machine set up. Any ideas?"
Mar 10, 2016
BeeAsleep posted a status
"Hi all. I am just checking in and saying hi after being gone for a long time. I am doing GREAT! Just got a new machine and mask. Feel like I"
Jan 23, 2016
BeeAsleep updated their profile
Jan 23, 2016
99 replied to Fred's discussion CPAP - cure worse than the disease
"Do not turn light on as this hinder you from falling asleep or choose red light instead which do not afect your sleep"
Oct 27, 2015
99 left a comment for Joan Williams Rice
"Hi Joan visiting pelham and I have osa"
Oct 27, 2015

Getting the Runaround: Dan's Story

Entry: to give someone the run·around
Pronunciation: \ˈrə-nə-raund\
: to act in a way which makes it difficult for someone to do something, for example by refusing to tell them things they need to know.

My friend Dan knows he has obstructive sleep apnea and is trying to use CPAP properly to treat his condition before it treats him to (i) at worst, an untimely death, or (ii) at best, a diminished quality of life. Amazingly, that puts Dan in about the 95th percentile of all people who have Sleep Apnea --- Dan is a superstar of Sleep Apnea simply because he knows he has it, and is continuing to seek treatment. What's more, Dan has friends and family who share the disorder and check up and encourage him on his progress; he has a highly skilled doctor in New York City, where he lives, well trained in Sleep medicine; he has one of the best CPAP machines on the market, the ResMed S8II; and he has a DME that monitors his compliance with the most cutting edge technology there is -- the ResMed ResTraxx monitor, which beams his compliance data to his DME on a daily basis so the DME can alert Dan to any problems, and make adjustments to his therapy. With all these things going for him, Dan is sure to get the care he deserves, right? Wrong.

Dan has been feeling very tired lately, so he left a voice mail for his DME last week to ask whether what they were seeing with his data was normal. No response. Dan is a persistent guy, though, so he called back this week and left another message, this time leaving his fax number and a request for a fax copy of his compliance data so that he could try to interpret it himself. Days go by . . . yesterday, though, he received the fax copy of his report with a cover page note: "looks like you are doing well." Confused because he feels so crappy, Dan poured through the report to see how he could possibly be doing well. At first glance, the report did look good -- the summary page didn't flag any sessions as particularly alarming. It was only when he went to the detail page did he realize that things were as bad as he had thought --- AHIs in the teens and the 20s, the mask coming on and off throughout the night.

How could it be that he got the "all clear" from the DME with such terrible results? Turns out, the DME sets up its monitoring of the data so that as long as the machine is being used for 4 hours or more a night, no red flags are raised. Well, Dan was using the machine more than 4 hours most nights. Problem was that during those 4 hours, he was slowly choking to death. This is the reason he went on CPAP in the first place!

Even though Dan is slowly suffocating himself with the DME's blessing, the DME is rewarded by Dan's insurance company, which, before it cuts a check to the DME, checks only that Dan is still using the machine. I suspect that's why in this case, Dan has gotten the runaround.

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Comment by Mary Z on October 15, 2010 at 3:41pm
Man, what a run around. Having trouble getting my numbers into normal ranges I can empathize. The only thing I can suggest is to get a copy of the software and to start checking your data yourself. If you have an auto machine you can slowly and cautiously tinker with the numbers and see if you can get better results . I personally have just changed doctors after a ridiculous script for 30/25 and a servo vent machine without taking advantage of the machines timed breath capabilities. I also have scheduled and ENT appointment to check for possible naso pharynx problems (deviated septum, enlarged turbinates) or large tonsils. I do not want the more aggressive and irreversable palalte, uvula, and tongue surgeries, but I thought the consult might catch some relatively small problems that if fixed could improve my numbers. We are also getting good reports about the Oral Systemic Balance Device from several forum members. Perhaps an oral device in addition to CPAP. The number to ask Dr. Robson about qualified dentist in your area is 1-800-977-1945 (thank you Dr. Lawler). I can't imagine the frustration you must be feeling with no one being willing to stick with you and help you.
Good luck, Fred, keep us posted.
Mary Z.
Comment by Fred J. Stellabotte on October 15, 2010 at 8:47am
Folks,

My story is very similar to Dan's except I am getting the run around by the Doctors. For the past 2 years my AHI has never been lower then 20, it is currently in the 30's . I have been to 4 doctors .. over that time, have had 5 sleep studies and 3 different BiPap machines. I am using my machine for over 9 hours a night, with very little leaks.

Some of the doctors say I have simple OSA, others say I have CSA, Periodic breathing and various other diagnoses. The doctor's get tried of working with after awhile, and make it hard for me to make an appointment.

I have been fighting this condition for 10 years, I am not sure what to do next. I am frightened.

Thanks ..
-Fred
Comment by 99 on September 20, 2010 at 11:39am
repironics now say that the light does not work without the humidifer attached
Comment by 99 on September 20, 2010 at 11:06am
Dear Mr Williams,



Further to our conversation earlier, I can confirm that it is possible to set a backlight on the Cpap device without attaching a humidifier. Instructions on how to do this will be in your options manual.



If you need any other information then please feel free to send me an e-mail or give me a call and I’ll see what I can do.



Hope this helps.



Best regards



Adam Dummer
Customer Relations Assistant
Respironics UK

Philips Home Healthcare Solutions
-----------------------------------------------------
Chichester Business Park
City Fields Way, Tangmere, Chichester, PO22 2FT
Tel: +44 (0) 800 130 0845
Fax: +44 (0) 800 130 0846
WebSite: http://www.philips.com/respironics
E-Mail: adam.dummer@philips.com
*****************************************************

Philips Electronics UK Ltd. Registered in England No. 446897

Registered Office: Philips Centre, Guildford Business Park, Guildford, Surrey, GU2 8XH
Comment by 99 on September 20, 2010 at 11:04am
now say that the back light is not functional without the humidifier and for it to work you need to attach an humidifer
Comment by 99 on September 20, 2010 at 10:08am
getting the run around

Dear Mr Williams

We have already explained to you that there is no back light on the System One machines. This is the way Philips Respironics designed it.
--
Regards,

Linda O'Rourke
Customer Care Team
Intus Healthcare Ltd.

Therapeutic Options
for Proactive People.
so posted email from philips respironics back
Comment by 99 on September 20, 2010 at 8:31am
authoritative answer from Philips Respironics System one auto flex
i does have a back light

Dear Sir,



I can confirm REMStar Auto System One does have backlight with it.



Kind Regards



Drew Hodd

Customer Relations

Respironics UK

Philips Home Healthcare Solutions

Chichester Business Park, City Fields Way, Chichester, Tangmere, West Sussex, PO20 2FT

T: +44 (0) 800 1300 845

M: +44 (0) 800 1300 846

E: Andrew.Hodd@philips.com



Philips Electronics UK Ltd. Registered in England No. 446897

Registered Office: Philips Centre, Guildford Business Park, Guildford, Surrey, GU2 8XH
Comment by 99 on September 18, 2010 at 7:13pm
i have just purchase prsystem 1 auto from intus health care
and complained that there were no back light
they told my that that feature was discontinued, which i temporaraly accepted. but on thinking about it i emailed resperonics and am waiting for an authoruive reply
Comment by Judy on August 8, 2009 at 12:58pm
Steve, my first local DME supplier's RRT was either not at all knowledgeable about her job - or less than truthful. I had the hard plastic swivel on a CL2 break and the small simple nasal cushion punctured after I had had the CL2 for 3-4 months. When I went in and asked for a replacement swivel and cushion I was first told they didn't have any, that I would have to buy an entire new mask (and headgear) out of pocket since I hadn't had the CL2 for 6 months. I actually had to go home, access the replacment schedule and HCPCS code for the parts to shove under her nose. It took 3 weeks for her to order it in. A third visit their EMT was able to "find" a swivel in the "miscellaenous" stash. When my sleep doctor scripted a 3 week loaner APAP I was provided w/a different brand than my CPAP but because he hadn't specifically included a heated humidifier w/the loaner their RRT told me that one was NOT available. When told even if my sleep doctor wrote another script including a loaner humidifier one was NOT available. My sleep lab was able to come up w/a stand alone passover humidifier but even that didn't help. THANKFULLY, a friend had a stand alone F&P HC 100 stand alone heated humidifier he gave me or that loaner APAP would have been a complete waste as after the third night w/o humidification the interior of my nose was chapped to the raw meat stage. When I needed a nebulizer this same RRT told me that Medicare would NOT pay for one for me. Yet another local DME supplier provided me w/a Medicare paid nebulizer. I was lied to about the data capabilities of the Resmed S8 Elite w/EPR my sleep doctor had scripted for me by this same first supplier's RRT. There's more - but you get the drift. I'm happy w/my second local DME supplier so mine is not sour grapes against all local DME suppliers nor do they have to do w/a lack of education, support and advice from that first supplier..
Comment by Steve T on July 29, 2009 at 6:09pm
BTW, take what is written here, especially negative experiences, with a grain of salt. We have had recorded conversations (for quality assurance) debunk negative "reports" to the Dr office about how horrible the RT was while helping them on the phone... Usually, the DME provider is patient and can help a patient with a multitude of pressure therapy problems. If the problem is NOT related to the performance of the equipment/supplies (and I'll leave you to figure out then where the real problem is) then there's not a lot we can do but be polite and reassuring. If that's not good enough, well, they might get on here and "complain". So, get out the salt shaker when reading some of these "reports"!

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